The disabled carry so much inside. On a daily basis we are challenged with what we let people know about our lives and our needs. Is it a good day or a bad day? Do we need to ask for help, and if so, how much of that help might be robbing us of our dignity? You may be thinking that we need to get over it. If you aren’t in our shoes, please think twice about that remark.
I like to think of myself as independent, though as I’ve lost more of my vision, I’ve had to ask for more assistance. I try to do as much as I can, and I’m noticing that the abled world is making it more difficult to do so. It adds to my daily burden.
At first, I was going to write a regular post. Sitting here, I’m going to do this differently. Here it is:
What I Do
wake, I notice
Scan the rest of my body.
I move from the bed realizing that I can walk when others can’t do this.
I engage in morning listening to a book because
I can no longer read print easily.
I give thanks that I still can hear.
Today should be a good day.
I think of those I know in wheelchairs
struggling to walk this day.
I hold them in my heart and hope that they will have the help they need to survive
My mind travels to those who must have assistance in all things.
We don’t think about that much unless we’re directly affected by someone in that situation, and
I hope that caretakers will treat them with dignity on this day.
This past week, I spent a great deal of time in preparation for a Sunday church service. The topic was the poverty trap. I’ve seen it, talked to people trapped in the cycle, and I’ve lived in a third-world nation and seen and smelled poverty in a way that has left a lasting imprint on my mind. I was using a video that talks about the poverty trap. I spent time viewing it multiple times to make sure I understood what was being said. Each time, my takeaway was added on from the previous view. When we gathered, I felt like I’d not done a very good job of things. Not enough, and things had gone off the rails. Had they gone off the rails or was it my thinking?
I’m using this as an example of how we, as humans, tend to pass judgement on ourselves and others. We all do it to some extent, and to say that we’re immune to it isn’t truthful. The fact is that most of us can name a long list of the negatives, and it isn’t balanced with the positives about ourselves. Good grief, why do we do this?
The answer is complex, and I’ll try to expand on one or two of the areas.
Social media and the ads we are confronted with affect us daily. We view advertisements that attempt to sell us, tell us, and convince us that without the latest gadget, or the vacation, or the right clothes, we can’t, or won’t, be enough. I’ll give you an example using someone’s weight experience.
I’ll call her Amanda. Amanda has done the yo-yo diet thing; she’s listened to the docs who tell her that she needs to be within the proper weight for the Body Mass Index (BMI) to be healthy. She also did the research and took a close look at her body. She has dense bone structure, is petite, and no matter how much she wants to be slender, she’ll never look like women of Western-European descent. She’ll look the way she is meant to look: healthy and beautiful as she is. She isn’t an overeater; her body processes things as it should. Has it been hard on her? Yes. Making peace with who we are physically is about having a chat with the person in the mirror, asking ourselves how we feel inside, and understanding what good health is about. It is understanding our bodies and knowing when to check out of the advertisement myth. How honest are we being with ourselves? Ultimately, it is about personal responsibility and doing the hard work on the inner self: the shadow work. It is this hard work that creates space for each of us to be good enough. It is saying goodbye to the myth of perfection. Amanda has done this essential work on her body.
I mentioned doing the inner work, or shadow work, on ourselves. I used to read this and not quite get the depth of what was being said. In my youth, I didn’t understand what inner work or shadow work is were about. If it’s about doing therapy, then yes, I’ve done that. It isn’t just therapy! I didn’t know that then. True, we can explore our issues and do some changing. The deeper work is stuff that causes us to look at ourselves mentally, emotionally, physically, and spiritually.
When I was younger, therapy was enough. I needed to address the issues of youth. I found therapists who were good at that; it worked. As we mature, things change on all levels. Eventually, we’re face-to-face with the ghosts we failed to confront in our younger days. The shadows we see in the mirror cause us to rethink and ask ourselves different questions. Our life experiences are showing us that it is time to move forward. We look in the mirror and begin to think: “Is this it?” or something like that. Now we’re looking for a different type of therapist, or a spiritual director. We want the person who will call us out on our stuff in ways that matter. We might discover the Enneagram, or another spiritual growth tool. The drive to change within becomes new, and we begin to put away keeping up with the Jones’s. We find that keeping up with the Jones’s is costly in time and energy, and not worth the effort. We find that the need to confront ourselves is real, and that the other things are not as real.
Marriages dissolve, faith changes, careers change; we get sober for ourselves. What once was happy and joy filled is sour. We want honesty from the person in the mirror. This is when the deep changes happen: we’ve hit rock bottom in our lives. This isn’t a rock bottom in the addiction way. It is a life rock bottom, and it demands to be addressed so that we can move forward.
We go to battle with ourselves, and in doing this new kind of work, we find books on spirituality, meaning, and we ask questions that we’d never have asked ourselves five years before now.
We begin to overturn the rocks of our soul, and we become disenchanted with anything less than answers that lead to real discovery and honesty. We begin to learn to sit with the uncertainly of life. We cry the ugly tears that teach us our inner truth. We speak the words of our real truth and mourn the loss of what isn’t, in exchange for a face without makeup. We stand stronger for all of it. Then we get down to the real business of life.
In this process, we learn to overturn some boulders on our own, or with help. The shadows that were once enemies to our souls become our friends; we look back, and realize that in our youth, we knew something, and now we know more. We do better. In our understanding, we burn the myth of perfection to the ground and embrace being good enough, and in this we move towards wholeness.
By now the things of youth are gone: the magazines, the desires, the noise, and the clutter of an earlier life. We’ve traded all of this in for retreats, quiet nights, smaller gatherings, a group of close friends, holidays with meaning, and an understanding that whatever happens, happens. We are no longer slender; we’ve filled out and have dense bones built on strength.
In our budding new self, we may come across our old self in the faces of younger souls. They look at us and may see wisdom built on experience. When they struggle, displaying the behaviors of the perfection myth, we can embrace them and allow for them to be themselves: good enough.
I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.
I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.
Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.
In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.
Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.
The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.
If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.
Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.
Speech and Hearing
Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful.
Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can.
While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.
I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.
I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.
So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.
Looking at the lighthouse on Bracelet Bay, I opened my heart to the path ahead. I can now look at my life heading into a new path. To move forward, it is also necessary to look back, and understand why you stand at the present waypoint.
It was after the ashes had been freed that I began to take note of a nagging feeling that I’d mentioned in the first post. Something wasn’t feeling right, and I didn’t know what it was. I didn’t ignore it, and I didn’t explore it either. I let it sit in my head, and let it work on me until I returned home.
Grief is a challenging process. We face it in death, divorce, a breakup, or a loss of a friend because one of you has taken a different life path and the friendship or partnership no longer meets someone’s needs. People’s values change. Our life focus changes. There are so many other things that happen to us in life that can bring grief into our midst. Pets must be set free from suffering, and we’re faced with the goodbye. What happens in the grief process is hopefully healing. First, it gets ugly: it must get ugly.
To get to the healing, we need to allow life to do its thing. I had made the decision within days of Jon’s death that I would avoid making any major life decisions that did not have to be made during the first year of the grief process. This turned out to be the best thing I could have done for myself.
For the first year I did nothing. I let the trauma of it all surface. The crying was awful, and as the tears came, the pain of it all surfaced. At the end of that first year (2017), I took a trip to visit family and friends. I returned home and faced years two and three.
In September of 2018, I made a major life change that involved a decade-long faith journey I had been on: I joined a new faith tradition and church. At the end of year three (2019), in the fall, I applied to the spiritual direction program at San Francisco Theological Seminary/Redlands University, was accepted, and I began to plan a new phase of my life. I noticed that things were changing for me. Four years later in 2020, it felt safe enough to return to the work I loved. I was stable and things felt right. I’d done enough healing. What is that healing like?
The Beginning Stage of Healing
In the beginning it might be a numbing to the world, to ourselves, to others, and we might seem detached. We sleep at weird times, eat nothing or too much, and we might not engage in normal, routine things. We can be caught gazing into nothingness. We can curl up into balls and sob. We rage at the unjust death of a loved one. We rejoice that someone is free from their body that has only been a source of pain. We mourn what wasn’t, rage at what might or should have been, and throughout all of it we want you to speak their name. Please, speak their name, don’t forget them. I won’t, and at times it seems as if their presence will always be around. Surely, they will walk through the door with a cheerful greeting, lighting up the space, being who they uniquely are. They are gone and it is a crushing pain. How can I possibly move on from this? Slowly, sometimes gently, and at other times violently, we begin to move forward.
As I moved forward from the spreading of the ashes, I came to realize that after six years of making peace in my heart, I made peace on the beaches. I had moved beyond grief. I came to realize that the work of the past was done, released to the sea, and that the work of a new life stood ready to embrace. I let the rest of the holiday run and allowed this realization to greet me as I opened my front door.
One of the most common questions that newbies to grief get asked is when will the crazy erratic tears will end. Will they ever end? The answer we give to others is yes, and they change in texture and quality. With time, the tears slowly diminish to a softer cry. Slowly, and with time, it changes. We can’t say when the tears will change for you, but they will change. I never asked the “when” question. I let it happen. I listened to the community and those who had more “time in the process.”
Middle Stage Grief Resolution
For me, it took a full three years to cross from the full-body crying to a gentler form, and in year four there was nothing. This was a middle place. It can be a time of deep exploration. Doing good work means that you take your time and allow others to take their time as well. Good work is about looking in the mirror and not tolerating dishonesty from yourself about the “what” of the relationship, the “who” you were in the relationship, and the “why” the relationship was as it was. Honesty takes guts, and grief isn’t for wimps. Asking yourself the hard questions and being able to sit with the discomfort for however long it takes characterizes that middle stage of work that we do after the loss of a relationship. Whether it is death, a breakup, divorce, or another type of loss, in order to heal and resolve our portion of the relationship, we must visit the relationship fully, see it fully, and not forget what we’ve seen. All of this takes a great deal of time and effort to get it into proper focus, and to move forward.
Resolving the Process
Six years later it was time to see beaches, visit friends, and new places. It was time to look back on the land behind me and face a new sea. It was time to say goodbye to the past and hello to the new life ahead. Bracelet Bay served as a point of closure as well as a new beginning.
Moving forward no longer feels or seems scary. I’m on my timeline. I’ve done the work. I don’t know what’s ahead. There is a sense of freedom and peace in all of this.
Jon used to want me to send him a song, and I’d sing to him, and so I’ll end this journey with Lisa Kelly sending a song that works for both of us. Love you, Jon.
So, what about the rest of the holiday? It was great! I managed to consume heavenly food, and the ice cream in Wales is scrumptious. I took advantage of the fact that I could get chocolate mint chip anytime they had it in the ice cream parlour. It was wonderful to enjoy every bite of that ice cream. I had the most delectable fish and chips at Langland Bay. The traditional Sunday lunch was a walk back into childhood and my mother’s cooking. Eating with friends, sharing a meal in a local pub where they served up Sunday lunch in two settings was the only way to do it while enjoying their company. Being able to binge listen to podcasts (and not be thought of as rude) was a cure for long years of working and stress. I warned my host/hostess about my binging need, and I’m glad they each honored my need to enjoy it guilt free.
While I was there, Queen Elizabeth’s life came to an end. It was interesting to observe the process. The British do pomp better than any other nation. What an experience and a joy to watch with friends who had lived their lives while she was queen.
This portion of the holiday wasn’t about the food, or the learning: it was about setting Jon’s ashes free. There were two stages in the process.
It began at The Shack, this quirky, quiet cottage that has the best chaise longue in the universe. We could have stayed on that longue for, forever! The host, Helen, was delightful and accommodating to my almost-blind needs. Helen was incredible and helpful, as neither Sara nor I had been to the area before.
One of the things I needed to do in the first few days was to scout out the bays for the one I wanted to scatter Jon’s ashes into. Sara and I spent Thursday and Friday looking at bays.
South Wales has some incredible bays; the views are spectacular. I was certain I’d find the right place.
Exploring My Options
Caswell Bay is a happy place with its welcoming benches, café, and yummy food. Sitting on the benches and chatting was wonderful, and while the bay and the water were accessible, it wasn’t the right place.
The drive into Oxwich Bay was a normal drive—until we came up over a rise to this amazing and stunning view! This happened more than once in our travels. While this beach was the most accessible of all beaches, it wasn’t the one. I sat and took it all in. It was playful and wonderful, and I’d go back.
Langland Bay, full of people, sunny and warm, was wonderful, and the restaurant that served up my fish and chips has an incredible view. The tides in that area dictate beach access. It also meant that to get to the water, I would have needed to cross some difficult areas. While it was a wonderful place, it just didn’t do it for me.
Then there was Bracelet Bay. The moment I saw it, breathed the air, and looked at what was there, my heart was stolen! The ice cream was lemon—and the first ice cream I had in Wales. It did not disappoint.
The bay holds my heart with its lighthouse that I had seen as we drove into the area. I would have loved to see it up close, but not this time.
As I looked at Bracelet Bay, it called to me: Here! Here! But the beach was not accessible to me. It is accessible. This is where I wanted the ashes to go. My heart sank. AND, on the other side of the lighthouse: a pier! Where was its access? I wanted that pier. I sang “I left my heart in Bracelet Bay” to the tune of “I left my heart In San Francisco” because I had fallen in love. Sara got it.
My time with Sara ended on a Monday morning: Goodbye Mumbles, shack, and on to an area I was in love with. We drove to my next destination, and to the couple that would be with me when the ashes were spread.
Hello, warm and love-filled home! I’ve been lucky to know Grace and her husband, Ken, for several years now. The home, and these people, wrapped me in care. The cold from hell continued to rage. I rested, binged, and enjoyed the fact that when with Grace, you enjoy her enjoying her tea.
I informed them that when the weather was behaving, we’d be off to spread the ashes. I will admit to being concerned that Wales would rain on me, and I’d miss my chance to do what I needed to do. I found out that Ken knew where to park to get to the pier. Hope was alive! I relaxed and trusted that it would happen. That Wednesday morning, we put the ashes in the boot, and around noon, with the sky not promising a blue pallet, we set out for Caswell Bay.
Lunch was delightful, and as I sat in the café the urge hit me. Ken and I walked onto the beach for confirmation of what I was thinking. No, not here. As we neared the car, the sky dumped rain. As we drove into town, my heart sank. Rain. NO, not now! And yet, it was present. Would I ever free the ashes?
Joe’s Ice Cream Parlour called to me, and I let my heart enjoy some incredible vanilla. It is wonderful! I’ll go back for more. Then, a quick pop into a shop, and on exit, sun!!!! Glorious sun and, yes, I wanted to go to the pier on Bracelet Bay!
You really don’t want to script this type of thing, and I didn’t. I knew where I wanted to put the ashes. What I would say either silently or speak out loud would happen.
I had run several things through my head. I had sat with this for six years of grief work. Yet, at the moment of release, my heart went to a quiet, sacred place. I spoke to myself, for this was mine, and mine alone. A silent “I love you” as the ashes left their container. As the ashes hit the water, there was only love. I had done the work of healing the pain, the hurt, the anger, and the struggle. There was nothing but love in my heart. His ashes were now in the water; they were free, and so was I.
I allowed myself the pleasure of a whimsical fantasy that now, Jon was exploring the bay, making friends, and asking lots of questions. For me it is a fun, harmless fantasy that expanded on who he was in life. I let the playfulness stand.
I was pleasantly surprised that all the anger had left me. When it was time to let go in fullness, there was no anger to be had. Six years, crying, angry, hurt by what he’d said to me in the last fifteen minutes of our life together. While I remember the words, the pain is gone. I had thought that I’d explode in anger; I didn’t. I had allowed myself to do the work of navigating through grief, to accept, to give time the chance to work on me. I had not turned from the difficult work. I have faced it head-on and accepted the process. I’ve run the river well. Six years later, it was time to set the ashes, and myself, free. It was a closing that I can look back on and move forward into something new.
On August 31st I boarded a flight that took me to Wales. I’d be there for three weeks. What I didn’t expect was that I’d get an education on my disability. I observed myself in ways that I hadn’t done in years, and I discovered that environments can be illusions. It was a great holiday and learning experience.
Before Jon’s death, I had created a safe environment for myself in this home. I’d forgotten how hard I worked to accomplish the deed. Jon had his space, and all other spaces were “Gail friendly.” After his death, I put the final touch on this place. The final touch was doing the front yard, to make it safe for me to be in. It took years, and careful thinking, to do it right. I needed to look inside of myself and ask, “What is and isn’t safe about this? What do I need to work in my home?” I realized that I needed to order new office and bedroom blinds, lay better flooring, and move things around in the kitchen. I reworked where furniture was placed in the living room. This home has become so safe that I haven’t wanted to notice its safety, and I became oblivious to what I had created. I realize now that I didn’t want to leave my safe haven. Now, I will leave more often because of what I learned. I need to get out, get away, and return refreshed. Yes, I needed this holiday, and I needed to learn some things about myself.
There is a process of becoming reconciled with one’s own disability. When we’re born with it, we adjust slowly. It feels normal to us. As children we naturally think that the world may be the same for others. I thought, at first, that how I saw was normal. Then I matured and found out that while I saw less than others, my vision didn’t work the same way. My seeing was radically different. Talk about a shocker! An example of normal versus abnormal would be like going into a functional home and finding out that not all families fight all the time. For a kid who comes from an abusive situation, this is a great deal to process, and then to attempt to unscramble on their own. My vision issues were present from the beginning; as such, my parents normalized things. From a young age I had to deal with what might be considered an adult issue—I had to figure it out. No one thought to help me make sense of it because I didn’t know, at first, what I should be asking.
I’ve been sighted since I was a one-year-old. My vision, what I have of it, is what I have. It’s my normal. Lack of vision didn’t slow me down: I found constructive ways to make things happen.
That was the way it was—until it changed. It changed for me one cold November evening when I engaged in some Night Walking. That night the world became unsafe for me, and I discovered I’d lost vision. That night led me to the ophthalmologist, realizing I might need a guide dog named Maira. It would also lead me to a place called Loo Erf, and fifteen months of rehab with the help of Koninklijk Visio. While the Loo Erf was a lesson in adjusting and confronting my vision once again, it forced me into the realization that I had lost more vision due to the PXE I lived with (Thanks, but Not This Gift). Looking back, I thought I’d done all the work. I was wrong. There is always more to discover!
One of the issues that I’ve had to deal with, and I’m not alone in this, is that I need to control the environment. I need good lighting, the best seating I can get in any room, a good hearing situation, and spaces that allow me to function as normally as possible. I’m not a control freak, but I need to see and hear it all. This also came up at the Loo Erf with my mentor, who thought I was being controlling. He consulted with another mentor who worked with visual and hearing issues, who informed him that I wasn’t controlling, but rather I was doing what I needed to do to gain environmental control in order to maximize the best situation for myself. The holiday was a lesson in gratitude for my environment, and also a lesson in what I can’t do by myself. YIKES!!! I discovered a list of “can’t-do-it-alone items.”
I can’t eat in poorly lit places anymore; I can’t walk and explore new places without assistance; it is harder to adapt to new places rapidly. While I can navigate a new location by creating a map in my head, I may not see all of the dangers without a sighted person to alert me to them and prepare for them. And so it was that “Myrtle Mae” (my cane) and I had a grand time in Wales, and I had sighted people with me the entire holiday. And yet, I still silently freaked out when the new space came up. It was a cross between wanting the adventure of it all and freaking out that in order to have the adventure of it all, I had to do new places that were not safe or familiar. It could have, but didn’t, traumatize me. I know how to deal with such things now.
My cottage mate, Sara, was a gem. She sacrificed exploration to allow me my limited abilities. On Saturday, while I crashed, she went out exploring. I’m glad she did. Grace and Ken were loving, kind and gracious, and they took me to Joe’s Ice Cream Parlour. Claire was her wonderful self; we talked and giggled and learned from each other. (Thanks for the taco run.) Sue and Paul were delightful. None of them made me feel ashamed, awkward, or incapable. If I needed “eyes,” they became “eyes.” Unpacking and repacking is never easy for me. Taking the suitcase down and setting it up again was not fun. Everyone was stellar during the time I was slowly coming to terms with a reality I wouldn’t connect with until I walked through my front door. The reality: my home is what I need to have in order to make things work for me visually. I’ll leave because returning will reinforce some good things. I’ll leave home because I need the time away from my home with a holiday.
Looking back, I realize that, along with the cough from hell, I was dealing with a vague uncertainty that hit me each time I walked outside, had to learn a new place, or navigate something else that was new. Myrtle Mae and I walked, but I was never alone. The fact is that I only have 12% of my vision left, and that isn’t a great deal of vision. It’s enough to consume tacos and to do the things I did. I’ve returned home to a Gail-friendly home. It is good.
I’m still in shock over what I learned, and know that my reality is far different from the safety of this home. It is unsettling. It is real and what I and so many other disabled people face when we leave safe environments.
Is preparing to go on holiday always a hassle? I got all the crazy put into place and found another crazy but not-so-crazy something waiting to greet me: my calendar! I think I need to travel more often. It could serve to keep me on my toes.
The above sentiment is healthy, and yet, I don’t like to travel due to what I wrote about in the first post; here I am poised to do this again. I know I’ll love it once I’m there; it’s the getting-there part that is annoying me. It’s also the fact that I’m self-employed, and the secretary/boss has to make sure all things are buttoned up before going. The hitch? People with low vision don’t do things fast; we do them slowly.
I can listen to stuff on audio that is at a faster speed than you might think possible. It takes time to learn to do it. When it comes to seeing, I look slowly to make sure I don’t see it wrong. So, clearing my schedule takes more time. Everything does. I wish it were not so.
The most frustrating thing I deal with is the “abled” who get bugged because I’m not doing it fast enough. Do your work, people! I am not your problem. Your inability to exercise patience with me is your issue, not mine. My independence is not up for grabs. Is yours?
Maybe the biggest hitch in our lives is people who aren’t willing to allow those of us with lesser physical abilities the opportunity to create our own ways of independent functioning. Those of us who have done our work know our limits. We ask for help when needed. The chances are high that in therapy, a rehab center, or somewhere else, we’ve had to come to terms with hard realities that haven’t broken us. If they did break us, it was only until we scraped ourselves off the emotional floor and got up again, knowing we could rebuild ourselves. We’re secure in what we need and don’t need. We don’t need others trying to feel comfortable for their own sake.
I spent fifteen months in a vision rehab center, learning how to do new things independently, without the use of my eyes. The two most essential skills I learned were how to talk to others about what I see and don’t see, and the ability to face the ugly truth about what my life really is. Simply stated, I learned to deal with messiness in constructive ways.
I spent one hour every week being confronted by the sweetest woman. She could match her clothes to a coffee cup and dish out confrontation of the highest caliber. She made me think, reframe, and understand myself as a person with disability. Most of the residents didn’t like the process; I inhaled it!
Our independence comes at deep personal growth, and often we pay a price for that growth. We lose friends who can’t deal with the fact that life is messy. We gain new friends who get that the messes of our lives encourage the roots we’ve planted to go deeper, to reach the water that is buried deep within the earth of our souls.
We’re strong; we can stand for ourselves. So, cut the worship narrative—we don’t need it! We’ve dug down in places you may have not gone yet. You may have dug in soil we’ve not been in. Let’s learn from one another by offering up the needed insights we can give to each other.
I’ll settle into a slow, methodical clearing of my calendar this week. The days of fun, laughter with friends, eating, and discovery are near at hand! Time to move towards it. Hopefully there won’t be any holiday hitch.
In 2006 my husband fell down the rabbit hole of a faith deconstruction process that would last until his death in 2016. In 2006 I listened and supported, but didn’t follow down into the rabbit hole of Mormonism. I didn’t feel I needed to know what was and wasn’t down there. It wasn’t my time. It has to be the right time to fall down that hole.
At the beginning of this tale, I should state that I was raised in a home where reason and logic were present. This would come in rather useful in the years to come.
It took me six years to go there. I’m sure that seemed like a long time of waiting for Jon, waiting for me to dive rapidly into that same hole. When I did, it was scary, sad, depressing, and full of questions, culminating in a process of mourning what could no longer be. In 2012 I entered what I now look back on as my “velvet deconstruction.”
I’ve never written about this because, to be honest, I haven’t seen—or felt—the need to do so. That has changed. What changed?
This year I’ve read a series of books that began with delight and quickly turned to needing to rethink, reframe, and reconstruct the Western Jesus. I realized my journey had challenged me in ways I hadn’t seen coming and left me feeling as if I was splayed on a spiritual floor. This time around it wasn’t velvet: it was brutal. As of the time of this writing, I’m healing, looking back, and wondering why I missed this until I was so deep within the process that the mess was ginormous.
Having a crisis of faith should be normal for everyone who is on a healthy self-development path. James W. Fowler researched and wrote about personality and faith development in Stages of Faith: The Psychology of Human Development and the Quest for Meaning. Stages is a classic and outlines our cognitive development throughout life. This is an academic work of research. What I really love about Fowler is that he illustrates that we never fully arrive. We cycle through all the stages over time, arriving at a higher level, only to begin the process over again. As with all things in life, learning never ends, and we’ll be doing it until our last breath.
So, I should have seen a second deconstruction coming, and I didn’t. I’d settled into a sweet spot, and when it ripped me apart it really tore at my soul!
How did this all happen? The simple answer is that I moved from one stage to another. The more complex answer is that I began to explore my values, my beliefs, and my life in new and deeper ways.
While I began to explore faith, I was enrolled in a rehab program for people with vision issues. It began as a five-day residential process, and during this time of my life I was confronted in a bold manner, asked to face my visual realities, and supported on multiple levels. And, in the end, I was able to confront myself. Looking at my religious life became an extension of that. For fifteen months I reconstructed my visual self; I wrote about it in Living With Disability. It was a life-changing experience.
Because of the work I was doing in this part of my life, it followed that I would look at the rest of my life. I began to allow myself to feel the sadness and pain of understanding that things are seldom what they seem. And so, it happened on a Sunday morning as we drove to church that I uttered the words that altered everything: “Can I make this church a place to stay and do good things?” That was in 2013, and I was trying to figure it out while realizing my husband’s need to stay away from it all. By 2014 I was still in place to try and a find a path to change. That all ended in November of 2015 when Salt Lake City announced what became known as “The Policy.”
This policy was set to discriminate against children who had an LGBTQIA+ parent in a relationship that was not heterosexual. That evening at dinner I lost it. How could a church deny baptism or anything else to a child?!!! Up until that moment I had thought I could make it work. Now I realized that I could not support such thinking. (The policy was reversed in April 2019 and the damage that was done couldn’t be undone or unseen.)
Suicide alters everything in the way you think, and in 2016, when Jon decided that the pain and suffering, he’d been enduring for the majority of his life needed to end, I was changed. I began to realize that I couldn’t go back to that church, and slowly during 2017 I drifted into nowhere land. I wasn’t making any major life decisions. I was moving to something, and someplace, new. I didn’t understand what it was—I just knew I was changing.
I was traumatized from a suicide, trying to re-establish a life. In the fall of 2017, I was discovering that another faith home was calling to me. I had to check it out. Certainly, I could look and still stay LDS. October of 2017 rolled around, and I found myself in a Starbucks at the Utrecht train station, having a conversation with someone whom I would come to love and respect. He wanted to know what I thought, not what I felt! It was in that realization that I knew I had a problem. Everything in me had been raised to be LDS. I was dealing with multiple generations of Mormons in my family. How could I even think of leaving? It wasn’t doctrine so much as other things that were tugging at me, calling me out to something that felt so different, so new, and where I needed to be. I told myself that I could attend this church service on Sunday evenings and it didn’t mean I was going to do more than that. Why would I ever leave? I didn’t need to do that.
I began to read, to learn, and to discover new ways of thinking. Growth is about freeing the soul and giving it permission to walk into new paths. By the spring of 2018 I was no longer feeling I could stay LDS and realized my value structure had shifted or rewired itself. I let go and relaxed into the process.
Looking back on all of it, I can see that this entire process was velvet. While there were tears, trauma, and fear involved, the process was gentle. Considering everything I went through from 2006 through 2018, it really was velvet. How could this be? As I look back, I think I view it as gentle because I wasn’t trying to force tings. I allowed the questions to surface, didn’t panic, and the few difficult situations didn’t last that long. The most difficult week was a conversation with my mother, and it ended with her apologizing to me. My mother and I could talk about most anything and giggle over life. We had a mutual respect, and she was open to many things that many LDS would have flipped out over.
I’ve come to the conclusion that faith transitions or journeys are more about a rethinking of a value system. Many people who choose to develop and leave the safety of certainty can remain in the same faith and approach things differently. For others, the choice to stay in one’s faith of origin is not an option. There are times when what we need changes because our ladders are sitting against a new wall. Sometimes the search can take years. The search for a new faith home can lead us out and to something completely different.
As I complete the last few months of my spiritual direction certification, I’m amazed by the paths that people are finding that bring them peace. I look back with my new understanding, and the new tools that got put in my toolbox, and offer up gratitude for both the velvet, and the not-so-velvet of the past few years. My new home is just what I needed.
I’m planning my holiday, and over the next two weeks I need to firm things up. During the past few weeks, I’ve come to understand that Covid-19 set me back in the travel department. I had not realized this until I started this process of booking flights, making sure I could get to where I was going, getting the proper testing done, and making sure that I can get to the airport. When you’re disabled, can’t drive, and depend on third parties to make things happen, it puts a kink in things.
There is a part of me that doesn’t want to deal with any of this; I just want to stay home and not deal with the hassle of it all. I know I can’t do that. So, I better face up to the hassle and get it all done.
Meanwhile, I’ll tell you about why being disabled and traveling when you’re single is such a major pain-in-the-everywhere.
When the average person plans a trip, they plan the trip, get themselves to the airport easily, check in, find the gate, and get on the plane. When the average disabled person plans a trip, there are added complications: HOW am I going to get to the airport? Is my needed assistance set up and confirmed? Is the airline I’m flying on friendly to people with my particular disability? Are the airports friendly to people with disabilities? If I’m on public transit, is it reliable? If I’m in a taxi, is it reliable? If friends are helping, are they dependable?
Now, add to all the above that I’ve got to meet travel requirements for airlines and countries before I board a flight! Can I get to a testing center? Do I need to ask someone to take me to the center? When do I need to make the appointment? Are the sites for the information accessible?
By this time, I want to curl up, call it off, and stay home. That won’t do.
This leads me to people I know who use travel services that support the disabled, at a slightly higher rate. They pair people with companions. For some people, this works well. For me, I’m not really interested in this type of thing. So, I have to deal with the annoyance of creating and doing it myself. Visiting friends for this holiday is the best option.
Don’t take this the wrong way: travel is skewed to favor those who can easily do it. It brings back memories of family activities where my siblings would be able to get to the accessible places; my mother felt like she needed to stay with me, and I felt guilty over depriving her of being with the rest of the family. “Mom, I can watch,” were words often spoken. The memory hurts. Now, I don’t just watch—I join in on my own terms as best I can.
I use the “wheelchair” service, I get assistance, I have cards in large type for safety instructions, and I meet some very nice people who are there to help me get to where I need to go.
This time around I’ll connect with friends that I love. I’ll explore beaches and other places, knowing that those I’m with will understand that I don’t see the world as they do. This time I’m staying in a cute but quirky cottage by the sea—some wonderful locations that will afford me more beach time than I’ve had in almost a decade—and I’m going to eat my way through all destinations. Eating is one thing that I can do without issues! So, let the feasting begin the moment the wheels are down and I’m on terra firma!
This week I prep so that next week I can relax about it. This week, I’ll embrace the insanity and make sure it is all ready for the safe, fun, event-filled days I’m hoping for. Next week I’ll reward myself for a planning job well done. Well, that’s the plan right now.
On July 27, 1977, my life stood still as I watched my younger sister fall to the ground dead. It was a Wednesday afternoon, and we were in Paradise, California, at the 76 gas station. During the next two or three hours, word spread in our church community. People would later tell me where they were when they heard the news. No one asked where I was: I was living it.
That was forty-five years ago! The memory is still present, but the pain and trauma of what happened that sleepy summer afternoon stand in my mind; the wound of that past experience healed but will never leave.
To this day, those who knew Joyce remember where they were and what was happening. They tell me where they were, but they don’t ask where I was when it all went down. The code of “don’t ask” slammed it all shut. They don’t need to know. To this day, I don’t know what was said about where my mother and I were. We witnessed it all in its horror.
The truth is that our trauma was not for public consumption. My younger brother never got to say goodbye to her. I left with two cousins for school, and he was now home alone having to adjust to being an only child—when that wasn’t the plan. You never plan for something like this, and yet I had thought about it because I knew she could die.
Her death messed things all up. We had to re-group, re-think, and adjust to life with no Joyce. Forty-five years later, the memories of people telling me where they were surface. Today is her death anniversary.
My mother and I talked about it when we were older and had distance from it. Death was riding with us that day and somehow my mother knew it. She thought it was going to be her that would die. We finally talked it out and realized that we were glad we’d finally said the words—late as they were to our journey of loss.
The truth is we all remember the “Where were you when…?”question. Those of us who are old enough know where we were when JFK, MLK, RFK, and others were brutally cut down. We remember the Apollo 11 landing, Challenger, the other shuttles, and now school shootings. We stand as witnesses to personal and societal pain.
We’ve taken to gathering at impromptu memorials to share as a community, and yet there is still stigma around personal trauma.
We’re not quite there yet with personal trauma; it’s like the accident that everyone drives by slowly in hopes of seeing the gory stuff. It’s about people wanting to be voyeurs into pain that they would not want seen themselves.
The catch here is that the “Where were you when…?” question enables us to talk through our own trauma around the incident. So many knew my sister, so many loved her, and no one had expected her to drop dead in a phone booth in Paradise, CA. So, the collective mind was collectively blown. Because of the collective trauma, we process it how we can.
For whatever reason, all of this came up forty-five years after the fact. I now live in The Netherlands, I’m far from family, and so, I’ll put this up instead.
Today I purchased flowers for myself and they turned out to be her favorite color: yellow. I’ll enjoy them for her.
I look at the clock and think about the fact that at this time forty-five years ago, we all had to eat. Some of us went for pizza and some stayed home at my aunt and uncle’s place. I went for pizza. I know, weird. The next day, my parents and my younger brother got into my father’s car and drove home and planned the service and all that went with it. Where was I? I was assigned to clean the house and so, like the dutiful daughter I needed to be, I vacuumed and answered the door for people paying respects. I think I’d rather tell people where I was when JFK was assassinated. Where were you when…?
I suspect that this will turn into a series of postings, partially because I’m amused at what I’m discovering about the journey out of grief and loss and what my brain seems to be doing with all of it. Let’s get on with it!
The first trip I took after my husband’s death was about a year later. It combined a conference with seeing friends and family. All things considered it went well, and the post-“husband-committed-suicide” conversations weren’t bad. I got home after three weeks and was glad to see my cat, Penelope. She had a blast at her kitty hotel in the country.
Traveling takes brain power, and once home I settled in for a year of hard work, looking at where I was and where I needed to go. I had a wee bit more confidence in the travel department, so when the next adventure rolled around, I dealt with it smoothly. I pulled it off with the help of charitable friends. 2019 produced two trips that I needed to take, and then: shutdown! We all know what happened next.
When I reflect on it now, I was fortunate to not have too many things go wrong. Going back into how my body was feeling when things did go wrong was telling. It was the same crisis response that happened a few times in the second year of post death trauma. It is so true that our bodies really do keep score on what is happening, and mine had.
When our bodies are in crisis, we miss a great deal. We can’t see how we’re reacting in the same way that others around us can observe what is happening to us. We fail to see signs that we’re missing cues. We tend to think that we have everything covered and that we really are just fine: Far from it!
The first year is the year of the first everything: a survival mode year. Then, during the second year, we drop defenses and we get slammed! It is the worst year to live through. It isn’t until the third year that our life texture really alters itself. In 2019 that is where I was. I was putting things together in new ways, able to see and understand how I was being triggered. I was able to understand that one month before Jon’s death anniversary was my younger sister’s death anniversary. It had also been traumatic, and when I connected the dots, things calmed, and I understood the strange depression that had set in and lifted promptly after his death anniversary.
I was thinking and functioning in healthy ways now and thought that all would go well. It would be onward and upward!
Here’s where things get dicey. The pandemic shut my brain down, again. I was doing so well, and then, splat! I slid back into I don’t know where. Our brains respond to stimuli and come to expect it when we begin to move forward. My brain had no way to know that the entire world would stop functioning as it once had. My brain regressed with the isolation. I think all of us regressed. Old traumatic events might have been triggered, new trauma might have been born, and the uncertainty of what the world would look like was an issue. So, my brain took two steps back, and until I really sat down and looked at the situation, I didn’t see it clearly in the way I needed to. I could have traveled last year, but I didn’t. Now, I get it.
A combination of fear and the realization that I hadn’t taken a real holiday in almost a decade set in. When I verbalized this to a friend, she was concerned: “You need to do something for yourself!” Stepping back, I could see the excuses I’d been making to myself and realized that yes, I needed to plan something that I wanted to do.
With all of this in mind, I thought about what I wanted: a beach, a reading binge, good food, seeing friends, seeing pretty places, and some lovely chats. It might not be your dream holiday and that is just fine. I’m going to create some magic on the beach. Why? Reason has returned and I need to do this.
Last night I learned a valuable lesson about hearing someone, doing the listening that needed to happen, and being awakened to what I was seeing with my ears. Confused? I understand that this would sound quite confusing. I also know that how we hear, see, and understand complex situations is not simple. Life isn’t simple.
Most of the time in conversations, people listen while planning what they’ll say next. That is not listening or hearing: it is pretending to listen and to hear. The idea that a great conversation should click along, be fast paced, or flow smoothly is only accurate if you want a bad conversation where you are not heard. So, nix on that sort of conversation.
Learning to listen is an art, unless you are Guinan, the listener, on Star Trek: The Next Generation. Then it is supposed to be genetic. Listening is an art, and sitting with someone, and their story, is a gift. The gift is being fully heard, and the art is in shutting up and offering the gift. Those conversations take longer and have a great many bumps in them.
What happened last night? I had gone into a conversation with a friend, who was doing something that I didn’t agree with. I was fully prepared to say that, and more. I began to do just that and then, hearing with my eyes, looking with my ears, I noticed my friend’s pain emerge. I’d never seen it that way before. It emerged in the words, the anger, the deep hurt, and the loss of what should have been in the past—but wasn’t—and what was being created in the present. I understood my friend’s actions in a new way. I had to chastise myself for my previous thoughts. I went to bed last night understanding that I was the one with the issue. Wow, how could I have been so dense?
The answer to the above question is that most of us operate on dense! We only switch to healthy operational listening when we really blow it or get called out on our failure to hear what is being said.
How many times have you gone to visit a friend who is grieving, only to see the dirty house, judged that, and not heard or seen the pain that isn’t being uttered? What is being spoken when we see the house, the hair that needs a cut, the meals that aren’t eaten? Are we hearing with our eyes? Are we seeing with our ears?
What if it is other family members in pain, or friends who are suffering from the same loss? Are we hearing and seeing right past each other? Are we thinking that because it is the same loss we’ll handle it in the same manner and at the same pace? During tense situations we tend to shut off, close down, and generally tune out the excess noise levels that we cannot tolerate. It is difficult to process everything when we’re hurting. What can we do to bring sanity to ourselves and to those we engage with?
Here are some suggestions that, at different times and with different people, have been effective in providing solutions to tricky communication situations. This isn’t a complete list, but it should help you to think of original ideas that will work for you.
Hold conversations in neutral spaces where you’re both on equal ground.
Own your feeling words. Feelings are never wrong: how you feel is how you feel.
We’re going to have different feelings about the same situation because we’re different.
Meet each other with respect. This means seeing the conversation through to its completion.
If you need to pause the conversation, when will it resume?
In a larger group, use a talking stick to indicate who the speaker is. It can be passed around the group. While the talking stick is in use, all members listen, and there is no crosstalk.
Parroting what someone said is not conveying what they said. Respond to the visual and auditory cues as well. The response you give might have a question attached to it. For instance: You really like the new room, and I’m sensing there is still not something right with the space. Can you tell me more?
If you know that the conversation is going to be difficult, bring that up first and give the person two or three options around when and how it can be done. Keep it realistic. In other words, hell freezing over, or the equivalent, is not a realistic option.
Feeling volatile around a subject? Work off some of the energy around it before you engage. Being clearheaded in conversations will improve their outcome.
Breathe deeply three times before you respond. In those three breaths, question the response you are preparing for respectfulness and consider the long-term damage a remark could make. Explore how you’d feel to be on the receiving end of the statement.
In the last decade, I’ve lost my husband, mother, brother, and sister. I’ve jokingly told my younger brother that he’s under orders not to die on me. I’ve also said goodbye to an old faith home and welcomed a new place of faith into my life. All of this comes with grief, loss, mourning what was, and needing to reexamine relationships.
Of those who have exited life, only one was old enough to do so; the other three were all far too young to go. The reality is that they are all gone. The relationships now stand for review in the memory file, and what is done is done. The past faith home also stands in a memory file. Everything is up for discussion and it’s all fair game; nothing is sacred, not even my mother, whom I love deeply.
In looking at all of this, I must turn back the clock to the year 2006, when my husband’s questioning of his faith began. At the time, I wasn’t questioning, but I did want to hear about what he was thinking, feeling, learning, and what was making him angry about it all. The process altered the way we communicated, and it led me to my own path of discovery. It was a good thing, and ultimately, I took from it that relationships can change and that the change can be for the better. We didn’t need to go to antagonism. The concept that we could be different and have a healthy relationship was new to him. We could talk and nothing was off limits. That was where we were when he made his exit. Because examination of things was possible while he was alive, it made it possible to return to the relationship after his death and turn over some of the things that I needed to look at.
Relationships don’t end at death. We carry them forward; they are woven into the tapestry of our ongoing existence. As much as we may wish to erase someone or something from our lives, we can’t. We learn through turning over the rocks to look at it all.
This is also true of my relationship with my mother. I was fortunate that for approximately eighteen years, my mother and I spent every Monday in conversation. We’d giggle, laugh, cry, learn from each other, and talk about things that were deep and serious. Obviously, we spent hours before that time in conversation. When she made her exit, the “I love yous” had been said, and the one question I never asked—the one that I’d like to go back and ask now—I think I know the answer to. Her death came less than six months after Jon’s traumatic death, and I did not go to the memorial. My not attending was a bad choice, and I learned from it. Being there is needful in so many ways.
As I examine my relationship with my mother, I can make peace with what negatives there were. I think the fact that we had that conversation base to draw on has really helped. Pushback was allowed.
Then I look at my sibling relationships. My two older siblings and I didn’t always understand each other. I’m sad about this, and I also know that it wasn’t of my making. I tried. Could I have done more?
In looking at the hard question of putting things right in life, and after they’ve made their exits, I’m challenged by the meaning of our relationship. What is “right?” I love them both. I know that they, each in their own way, loved me. As I take relationships apart, I arrive at the same nasty conclusion that I did in life: They never understood disability the way they needed to understand disability. They were never able to completely understand me. I’ve come to the conclusion that I can be at peace with my end of the relationship and that is the best I can do. This brings up another question for me, and it is one I’ve been musing on for some time.
Why is it that in death, loss, and grief, many people choose to move forward without the work of examining the loss they’ve had in life? The urge to replace someone or something can be strong, and it can also damage us. The more I sit with this question, the more I wonder if it has to do with the fact that our society has radically changed relationships, trauma, and life in general. I’ll explain using WWI and WWII.
Both of my grandfathers were veterans of WWI. They came home on ships. They came home together with war buddies, and in large numbers. On the ships they had time to process the violence and the trauma, and they supported one another. WWII came around, and their sons enlisted and went off to two different fronts: Europe and Japan. They also witnessed violence and trauma, and they came home on ships. They also came home to a hero’s welcome. Their fathers had processed the war and now could mentor their sons. War breeds atrocities, and WWII left the world with several that can never be undone. Old times weren’t any simpler, but they were slower. What’s changed? My grandfather knew the wisdom of allowing his son to prune the rosebushes and tend the garden. He worked through some of the trauma that way.
Leaving the site of battle is a matter of days or hours now. People now come home by boarding a flight that will carry them home. Veterans now come home to a fast-changing society, fast tech, and a culture that is in constant motion. They return traumatized and, in many situations, misunderstood by loved ones and society in general. It alters relationships. This is not to say that my parents’ and grandparents’ generation didn’t suffer from PTSD and other war-related issues. I’m pointing out that their return was slower and allowed for a different type of processing time.
I’m suggesting that maybe we’ve become immune to the damage we’re causing to each other by not slowing things down. In the past seventy-plus years, we’ve moved forward in both healthy and unhealthy ways. This applies to how we treat our relationships.
Are we willing to slow down and take the time to process our lives a wee bit more gently? Parting is hard. No matter how hard we try to avoid it, the past does catch us, and sooner or later what we failed to look at in the near or distant past resurfaces to bite us when we’re not looking!
I reflect back to a night around the dinner table when my father lost it over food. I realize now it was a war memory that he should have sought therapy for, but in those days doing therapy wasn’t common. At the time, it had been about thirty years post war—pruning the roses had not resolved it all. I wonder what would have happened had he looked, talked, and resolved? I wonder how our family would have been changed had he looked. I know how I’m being changed by working slowly and deeply on the past, whether it is peaceful or difficult. I’m moving forward in a healthier manner than had I rushed into my future life. I’m walking into something new, and I hope I’m doing it with grace.
The last six years have been filled with all sorts of happenings, and while I’ve moved forward in so many ways, I can’t really explain it. I realize that not having the words for what has happened has caused me not to write about it. The time has come to find the words.
Why haven’t I put this on paper? One of the reasons is that part of me thinks I might alienate the reader, not be read by someone who is in the early stages of their loss. Logically I know they can return when ready.
When I think back to where I was when I wrote “Navigation,” I marveled then at the time of the writing. I return to the piece, I’ve had clients read it, I and realize that it speaks to the wonder and process of where we’ve been and where we’re trying to get to. How have things changed since that time?
I’m running the river! I’m moving through deep, uncharted waters, places that call and beckon me to come have a closer look.
Running this stretch of the river has become about being able to reframe the past, look to the future, view my life in new ways, and ask some hard questions of myself. It has also meant that I admit my ignorance in some areas of my life. I’m able to observe what got shut down and is switching back on. More on that in a paragraph or so.
Sitting with a friend in my garden last Friday, I looked at him and said, “Brace yourself, I’m going to say something you thought you’d never hear from me.” He laughed when he heard me say that I needed help with something. It was a respectful laugh. Sometimes, growing up because of loss and maturing in new ways means that we must ask for help! It is also a sign that something has switched on in the brain: something that may have shut down due to the trauma of grief, loss, and life restructuring.
As we run the rapids of life, we’re required to become fully present to ourselves, to others, to our surroundings, and to our knowing. At first, we think we’re doing a wonderful job of it, until something or someone shows up to slap us silly, and we see, feel, or realize that no, we didn’t have this as we thought we did. And so, sitting in my garden, I had to voice the fact that I didn’t know something. That was an intelligent thing to do. I also realized that something in my mind had turned itself back on. This switch had been subtly nudging me to awaken to the present. OK Gail, get on this, move with it, and know that with this new line of thinking, you really have come to new ground.
I began to concentrate on thinking about how the switches turned back on and why the change and resolution slowly creep back into our lives. I can tell you what shut itself down instantly, and in some cases I am aware of the switch moving to the on position again. Libido, cognitive processes, diet, and physical awareness, to name just a few things that mess us up, went down instantly. This is why our friends and loved ones look at us like we’ve vacated Earth and moved to Saturn. We’re not speaking our normal tongue: we’re speaking in grief. This is why, for some, they find new friends and wind up having to pull away from old relationships. It is not that the person wasn’t a friend: they’re not able to speak grief. We don’t have the energy to teach them grief right now. It is why doctors and therapists might tell someone that six months is the proper amount of time to work through grief! The body might not be able to grieve for a year or two because we’re in survival mode. A huge part of the process is allowing the body to shut itself down and do a reset. When you’re in the midst of sorting out estate issues, cleaning up a nasty marriage, or recovering from another life event, your body isn’t going to do the reset: it needs to survey and find out where the damage is—then it can reset. Six months for grief? No, not even close. Docs and others don’t speak grief. If they did, they wouldn’t be saying that six months is enough!
The shutdown is the biggest reason why we shouldn’t change things for a year or two. We’re not in a place to process things. So, cut us some slack for coming out of a long-term relationship and needing to do the healing! It’s going to take time to gently allow the body that has been in fight-or-flight mode to catch up and switch back on. It takes time to learn about our lives again.
About three months after his death, the first switch came on for a day and promptly shut itself back off. It would take some six to eight months to have it flicker on again, and several years to have it come on completely. I didn’t realize until it came back on in full-power mode that things had shut down. It caught my attention. Some things have taken several years to stabilize.
From a distance, my brother had noticed that my sleep was all messed up, and he pointed it out to me. While I heard the words, I couldn’t fix the sleep issue. Some things are only going to work only when time passes, and inner work has been done, and it is safe for the body to return to a new way of being. Eventually sleep became normal. The sleep and everything else had to readjust to the new normal.
The stress I was under was intense. While I felt it, I couldn’t see it in my face. But others could.
If the grief process, and the losses we suffer because of it, cause our bodies and minds to desynchronize, then syncing up again sends us signals that we’ve moved, and that it is once again safe for us to go to new places. On many levels it is kind of magical, and in reality, it is quite logical. Family, friends, cut us some slack here! We’ll be back when our bodies, brains, hearts, and souls realign. Until it happens, please, take the garbage out, walk the dog, understand that you can help with the shopping, reminding us to cut our hair, get us out in the sun and get us out for walks. Yes, we’re really that checked out in the beginning stages, and sometimes it takes however long it takes to slowly speak Earthling again. Telling us to check in isn’t going to work, because our brains aren’t ready to do it yet.
So, how does the process from grief to something new really happen? The process, whatever it may be, happens slowly, and the observer may or may not notice the inner changes. We may or may not sense the inner movement that is going on. What happens? In the beginning, our bodies go into fight-or-flight mode because they need to protect us from the dangers that we know must be present. This happens without our authorization. Yup, our bodies automatically take command of things. The trauma of the event sets in, and our bodies go into shock and shut down. Essential services remain queued for functioning, and the non-essential services take a holiday. Depression is a typical response to loss and pain.
Think of being depressed in this situation as essential services attempting to shut the entire process down. All of a sudden, the neurons aren’t firing correctly because we can’t make heads or tails of something that wasn’t supposed to happen, happened unexpectedly, or might have been so far out of the realm of our imagination or normal that we’re being challenged to resolve it when we can’t do it easily in the present state of existence. The body, amazing thing that it is, throws the stop switch. We wonder when it will all end, and board the grief boat, trying to locate a seat. Sometimes finding a seat is difficult because things are that disconnected in our minds. The boat pulls away from the dock without concern for us. At times, we get off the boat to explore something new. We get back on a new boat and notice that things are a wee bit nicer in the interior. One day we awake to find ourselves in a spacious yacht. We wonder how that happened. We realize that we’ve been a part of our own personal miracle: the ignition of the new self. We look in the mirror to see that we’ve switched back on. Double-checking, we discover, for the first time in years, that we’re present to our own lives in a synced manner.
Last night while reading, my mind was blown by what was on the pages. It seemed as if I had been sent sailing into the outer limits of my mind, and that I was needing to process all the fantastic thoughts that were coming to me. I realized that my out-of-this-dimension-process-person was gone. OUCH!
In realizing this, I also noticed that I wasn’t shedding tears, I wasn’t angry, or even sad: I just missed him and the easy access to processing wild thoughts. Now who do I do this with? The one person who might go there with me no longer speaks to me due to where my life has gone. (That’s an entirely different post.) What do I do now?
The prospect of finding a new conversation partner for exploring the out-of-the-box things that need to be spoken, pondered, turned over in the mind, and configured into working theory and thought is difficult. He is gone.
I began to reflect on those long conversations that took us into first one and then another subject, until the wee hours of the morning when my intellect was stimulated and all we could do was collapse into bed, not remembering exactly where we began—only knowing where we wound up.
While walking on the treadmill this morning, I realized that somehow, without my knowing it, something inside of me had shifted. What piece of the grief puzzle, the loss, the resolution, had gently moved into place?
Is it that in our journeying and self-discovery and the multiple examinations of the past relationship, we resolve the ugly, the painful, the hidden along with the happy and joyous parts of the relationship?
In contemplating this, my thoughts turned to the fact that death is for the most part traumatic. It is traumatic for the dying and for those left behind. We don’t expect it will happen when it does, or how it happens. We don’t get to have closure. Yes, if there is a terminal illness involved, we might be able to have some of those conversations—but not all of them. We move forward, and in time, shifts happen and things change.
There are no certain answers with the grief process. There is no ready formula that creates resolution and stops the tears. There is no end point. Time doesn’t resolve the pain and loss. There are people who are in the same struggle ten years after they’ve lost someone—the pain is just as intense. I think there are things that can stimulate forward movement. I’ll talk about a few of them in no particular order of importance.
Be open to the tears, because tears tend to cleanse our souls and open new paths of healing. If we fail to care for ourselves by honoring times when we need to let the tears flow by pretending that shedding the tears is weakness, we shut ourselves down to legitimate growth. It is natural to cry in pain, to feel the hurt fully, and to allow our bodies to respond naturally when we’ve been assaulted by physical, mental, or emotional pain. Tears are a cue to the self that all is not right within us.
Shrines are damaging, so don’t build them. Shrines to anyone tend to block progress. They stifle our development by keeping us in a memory loop that can lead to not being able to move forward. We become trapped in the past life we had with this person.
Reclaiming a space that may have been the domain of another person is difficult and emotional work. It is a good idea to go into a bedroom or workspace with a supportive friend or family member to enable the beginning of the process of restructuring the new space.
Photographing things we want to remember enables us to move forward and hold onto memories. It also allows us to create new spaces for the living. I think people create shrines in fear of forgetting. This doesn’t mean that we go in and take everything away. What all of this means is that we give careful thought to finding some of their possessions new and loving homes. We become selective about what will really mean something to us. We might store some things in order to determine at a later time what we want to hold onto. There is an element of realism to this. In sorting through things, we can remember and face some of the work around remembrance that must be done in all relationships. I had sufficient space to store some things until I could realistically come to terms with what I wanted to do with them. Intentionally packing things away, asking others about some of the items, and coming to terms with how I felt about things enabled me to not erect any type of shrine that would be unhealthy.
In stating the above, it does not mean that I’ve wiped my husband out of the home. There are photos and other special memories tucked away that I can enjoy when I want to do so. No shrine.
Stare it all down. If we’re not willing to look at something, we need to as ourselves why we’re avoiding doing so. If we’re in a rush to explore everything, why is it a rush? Would allowing time and a gentle approach serve us better? There are some realities that we’re forced into dealing with, and meeting them with courage rather than denial does wonders for us and others. Denial, in its own way, is a shrine to the unknown.
Recognize that if you listen to your heart, your head, and your gut, you will gain insights into the when and the how of looking at issues. You will also have a better sense of when you are stuck and need to seek help in moving forward to the place where you become unstuck. For most people, the process of looking at it all and facing the reality of whatever loss it is seems to be the most difficult. We’re not animals who are designed to move on. We’re humans, and we function differently than out pets, who may remember and miss their pet housemates or human companions, but who will move on as the scent fades with time. We’re wired to remember, and we should!
Speak the person’s name! Speaking of memories and uttering their name is a good, healthy thing. Burying the person is one thing and keeping them alive in a healthy way is another area of work. Out of sight is not out of mind. Talking helps us all process the loss.
There will come a time when you will be able to remember and reframe the relationship that was lost in a better and clearer manner. Allowing for gentle time, courage, and uncertainty as to when it will all come together is key in moving on. Yes, I miss him in a different way now, and it is both sad and good at the same time.
There is a musical trio known as The Kingston Trio, and during their recording career they recorded a little ditty called “The Merry Little Minuet.” While it might have been humorous, it was also a serious commentary on the times. That little minuet has been playing in my head lately. The world seems to be falling apart. Wars, discord, unhappiness, and a pandemic all seem to be conspiring to bring us individually to a point of asking: How do I create a safe place of sanctuary for myself?
Those of us who have walked in the grief zone may be one up on this—but not necessarily. It depends on where we are in the process and how we’ve managed our self-care.
Sanctuary can be defined in many ways. The religious may see it as a place of worship. The spiritual person might see it as a state of being or a place in the heart. Still others may choose to view sanctuary as a specific location: their happy place. For this post, I’m going to use a bench found along a walking trail sheltered by trees that let the sun in so we feel its warmth.
How do we find this safe place? My experience is that it only comes to us as we shed the tears of pain, longing, desire, and uncertainty. It comes with the casting off of old certainties and beliefs and diving headfirst into the blackness of the unknown. It comes to us as we search for what we need and hope will spring forth from the ravages of trauma and personal havoc. In our recovery and rebuilding process, the hard work of deconstructing what was tires us out.
During our deconstruction process, we wonder about the ending. At first we stumble into momentary places of relief, but they are fleeting. Our work propels us forward to other new places of discovery. Slowly we encounter a place that offers us more than a brief rest and begins to take shape as a place of reflection and pause for our weary souls. Soon this place of the heart begins to heal us and to hold us in a place that we come to think of as sanctuary. It might hold us in a sacred place where only we’re allowed. It shelters and welcomes us. We can go there as needed.
With time, our reconstruction requires that we view our journey with both its pain and new hopes. We re-examine the old and discover the gift of the new. While what we’ve been through may have been hell, the place where we’ve arrived is a gift we’ve given ourselves.
Whether your personal grief was the loss of a loved one, the loss of health, mental illness that has left you debilitated, loss of faith or a faith transition, a failed relationship, or whatever hard thing life served you on your platter, you know this journey and place.
What does the above have to do with all of the crazy that is occurring in our world today? Those of us who have been to these dark places hold wisdom that will be useful to us in making peace with the world as it is.
We can and often do serve as witnesses that there is hope and support for you. We understand that pain can go away. We’ve asked the “When will this ever end?” question and discovered that we must hold space for searching our hearts. We’ve faced our personal realities and given them permission to blossom into something new and powerful.
We’ve come to learn that meditation, yoga, or a new spiritual self leads us to a park bench that we had no clue existed. We now sit on that bench and offer the questioner a place beside us. We can serve as life witnesses and companions for the weary because we did our own work.
As I reflect on the good, bad, and unpleasant of the past decades of life, I’ve come to realize that a topsy-turvy world can calm itself best if we center ourselves and take the time to quiet our souls. I look back and see how I didn’t have the skills to make it to a park bench. While I could manage a life-crisis situation and come out on top, I did not understand how to walk to the bench. The loss of my husband taught me to find the park bench and to be able to sit quietly on it. There is no drama here—only peace for my soul.
I think back on “The Merry Little Minuet” and reflect on my concerns for our present world state. Yes, I’m concerned that the U.S. is falling apart. I’m concerned that there is a war going on about a two-hour plane ride from here. I’m concerned that we’ll never feel as safe as we once did about viruses getting loose and infecting the world. I search my head and heart and in them I find peace because I’ve created a sanctuary for the soul. It is mine, and no one can take it from me.
If you search this blog, you will stumble onto “Seasons,” in which I talk about my favorite time of the year: autumn. With its rich colors, deep scents, and vivid changes, I love it. The fire and warmth move me to cozy places of the mind. The autumn of the heart takes me someplace else.
Grief in its beginning stages, before the work of sadness is done, is cold and brittle. It drives wedges into our hearts and minds, and as if we’re stuck outside in the freezing cold, it immobilizes us in our pain and threatens in its beginning months to shut us down. The winter of grief stands mocking us and challenging us to bury ourselves and succumb to the cold. And then, as only the freezing cold can do when a person is close to death, it tells us that we’re really warm and tired, and that sleep is to be desired. What we need to do here is feel the shivers and stand up and move. As we breathe out and notice our breath, we see the cold in ways we can’t feel it. We must move forward and survive this desolate place.
In the work of the tears, we feel. For the first time, we understand our own pain at the loss of what was. Loss brings with it the death of innocence. Whether it is our first loss, or several losses out, each time a piece of innocence leaves us. It seems as if the winter of grief will never leave us alone.
In our longing, the winter does pass and merges into a spring of the soul. The texture of our tears changes, and new little shoots of hope and life spring up, as if by magic. We had no clue they were present! Where the hope of spring comes from is the tears that watered our winters, the fires that ignited our rage and anger, and the soft gentle moments that called us as we trembled in pain. All of it planted seedlings that are now poised to offer up growth.
In many ways, it seems as if we’re privileged to have our own miracle. We may shake our heads in wonderment and then accept that, somehow, the thing we thought would never end is changing us inside; and if we’re wise, we let it do its work within our hearts. We allow the spring rains to nurture new thoughts and questions. The spring rains are softer and gentler, and as we cry them, we continue to water and grow. At this point, we don’t fully understand our pathway forward, but by now the gentle sunlight of the spring calls us into new life. And, like the seedlings that have now showed themselves, we move upwards, forcing the earth to give way to new bloom. Spring, with its gentle power, is pushing us into the summer of exploration and strength.
The summer of strength, with the trees that give us needed shade, allow us to rest from the difficult work of the winter and spring, feeding us new and wonderful meals. We explore new places, gain new confidence, and realize that we’re doing the things we thought we couldn’t—or wouldn’t—do because of the losses in our life. We can reconcile old and create new relationships. In the heat of the season, we discover new ways of being. Maybe we even climb a tree or two. We swim, play, and discover that life can be good. We notice the days are cooling, the urgency of summer’s end sets in, and we wonder in our new strength what we’ve learned.
The days and seasons have carried us into the autumn of loss, and we allow ourselves to turn around and to look at the landscape. We see the fire of wisdom begging us to sit under the trees that are now turning to their rich colors. Soon they will drop their leaves of glory and will return them to Mother Earth. Now we sit in the place provided. We pause and begin to view the lessons of the seasons: the wisdom waiting happily to be examined. It is time to discover the treasures we didn’t know would come from our pain.
Loss, in all of its diversity, teaches us so many lessons: the life choices that we made that led us into dark places; our inability to say yes to something that was good because we were afraid to risk something new; the “I should have not done that,” as we realize the pain it brought into a loved one’s life; our first ventures from home and how we had to learn that maybe we weren’t so grown up after all; the failed relationship and realizing only too late that there are two sides to everything; the realization that, while the marriage was good, we might have done things to make it better.
The sitting in our autumns asks us to look, and as we look, we see the stuff we held strong in. We notice our weaknesses that became new strengths because we were willing to get through the winter and walk into our spring. We see our stumbles, our risings, and our victories over things we thought during our winters and early springs we’d never be able to conquer. We see ourselves in “Navigation” during our springs and summers, and we must pause to say “wow” once again.
As we sit in our autumn, we find ourselves shedding tears for ourselves—weird tears of amazement and understanding at the brutality of what we endured and the inner strength it took to get to the place we’re now seated on. In wisdom, we come to understand that the brutal winter had to happen so that the spring and summer could come. We come to an understanding within ourselves that, while we would not do it again, we’re glad we walked through the seasons of our loss.
As the leaves begin to fall, we bend down, retrieve a bright red one, and hold it in our hand. Giving thanks for the autumn, we return it to where it was so that Mother Earth can reclaim what is rightfully hers. We shed one last tear, realizing that once again, the process has worked within us. And we know we’ll shed other tears that will come from places of wisdom, courage, and gratitude. Inasmuch as things can be, all is well.
My sister’s death and graveside service and the memorial that followed have given me time to think about perception. It is often thought that you shouldn’t speak “ill” of the dead. This is not healthy from a psychological perspective.
If there is truth to be told, there are reasons to consider telling it. Truths left untold can wound the soul. Truths that are silenced in a burial can be quite damaging. Speaking an honest reality promotes long-term healing.
The image we have in life of a person may not be the image we think we need to idealize in death. Before we tuck that squeaky-polished image into the mind, we need to ask questions: How will this hinder me going forward? In burying a truth, who is hurt? While we might want to polish the entire thing up, remember that the elements tarnish what we bury. Bodies decompose, stuff falls apart, time fades things in a negative way, and sooner or later the pieces fall apart.
With the decomposition of that which has been buried, we must also ask ourselves what it is we’re burying. We aren’t burying objects; we’re burying history. When we step back for a moment, it conjures up the thought of burying a family health history. And why would we bury vital facts that could save lives? How would that benefit us or those that follow after us? It’s the same with other history that has transpired.
If we can avoid creating generational trauma and the wounding of the soul, doing so will serve us well in the long run.
We all have a soul, though at times, some might doubt that they have a soul. You have it, and your spirituality, in whatever form it takes, stems from your soul. Your focus might be nature, walking, traveling to undiscovered places, making connections with others, or sitting in silence. The possibilities are endless!
Serving up an offering of love and generosity enables us to not wound ourselves.
I’m not good at burying things that need to be spoken. I’ve found that speaking the truth is far easier and less wounding, and that it serves us better in the healing process. Secrets can kill us. This is very true of family secrets.
I recently finished Healing the Soul Wound by Eduardo Duran. Eduardo is writing from the Native American perspective, is a psychologist, and offers up some wonderful insights on why we each need to address out individual pain.
A ceremony of my making for my personal memories that I want to work with is fine for addressing my perceptions and reality. I choose to do it privately.
I posted the question of what is taken from a memorial or funeral address and how it affects us, in hopes I’d get some great insights. I think I posted in the wrong place. The responses that came in were about the celebrations that were had: a party for the soul of the dead and the lives of the living.
As I sit here thinking about it, having a true celebration of life with no speeches doesn’t seem so bad. We still reflect on their lives. We still remember the good, bad, and ugly stuff. The truth of life is that none of us are saints, and the saints get elevated after death when they can’t protest the atrocity. This is a good thing for me, as I’m a huge Mother Teresa fan.
Maybe the best thing for me to do with all of what was said is to let it stand. Allow for all perceptions to linger and move on.
Love you, sis. We set you free and take our memories with us, allowing them to be what they are in our minds and hearts. I’ll create my own ceremony for you. That’s the way I’ll honor you.
A guy loses his wife after a thirty-year marriage and two weeks later he’s dating a new woman. Six months later he’s remarried.
Does this sound like a scene out of a crime show where the dude killed off the wife to pursue a love interest? Brace yourself: it happened!
Wifey poo died of cancer and this guy has barely buried the body and he’s finding a new woman. By the way, his kids are angry at him.
This story isn’t the first of its type that I’ve heard. But it is the first that was so quick where the partner didn’t commit a crime to start dating the new, soon-to-be partner. I’ll admit that Jon and I watched a great many whodunnit shows. This guy took the cake!
For some reason, this time, hearing this made me think about grief and finding a new partner. My view on this has changed over time. I think I’m still sorting this one out.
This is my six-year mark as a widow. My first two years were all about survival and learning how to get through the mess. The next two years were about the beginnings of peacemaking with myself and the good and bad of our relationship. Year five made me realize that maybe, with the right soul, I could do a new relationship. I’m still sitting with this one. The pandemic didn’t help, and it doesn’t help that I’m kind of shy and don’t put myself out there easily. I’ll admit that having a partner would be nice. I’ll also admit that I like calling the shots.
This brings up the question: When does one know how to move forward? My husband showed up at my back door! That isn’t happening a second time around. So how does one figure it out?
The question of figuring it out is one of the top questions asked during the grief and recovery process, right after “Am I doing this right?” This latter question is easily answered. If you’re staring grief in the face, and it is harder than hell, and you keep turning over the rocks to answer the new questions that come up for you, you’re doing it right. If, on the other hand, you jump off the grief bus because you’re feeling empty without a partner—whoa. Get yourself back on the grief bus, find a therapist who speaks good grief language, and start digging into the question of why you need to find someone.
When a marriage is successful and you want to create a new one just like what you had before, scrap the idea. It will blow up in the face of both of you. Your chemistry won’t be the same, you won’t be the same, what you want won’t be the same.
This also goes for divorce situations. This is especially true when you divorce without doing all the grief and loss work around a failed marriage. When you do the work around the failed marriage—and do all the work you can—and then find someone new, your chances of not having a repeat divorce situation are statistically higher. This is data from a page that comes from the legal profession. I’d have to say that the stat for a second marriage holds for my widowed female-identifying friends: 60% fail rate. So why?
Relationship attitudes have changed. I’m not one to say that my grandparents’ generation did marriage really well. They didn’t. Many of them did understand the give-and-take of marriage and learned to make it work. Some of them stayed in an abusive marriage because, at the time, women didn’t have the options that are out there now. A minority were able to walk away and, with support, build strong lives as single parents, or did the work to find a second partner that did work out. It wasn’t such a disposable world then, and people worked hard at making it work.
The calm 1950s turned out to be an unseen pressure cooker for the explosion of the 1960s. Take your pick of the “I don’t need to stay in a bad situation anymore” scenarios! The Civil Rights Movement, women’s rights, and being a member of the “Tang” generation. Our classmates’ parents were breaking up, moving on, and generally not willing to settle for a sub-par situation when the perceived options and advantages for one’s mental health were available.
The bailout of the 1960s through the 1980s taught the kids that maybe relationships weren’t forever. In 1994 the term “starter relationship” was coined. I’ll admit to not having read the books cited in the article. So why am I sidetracking you? Because I believe we’ve lost touch with just how difficult the first five years of marriage can be. We’ve lost touch with the fact that there are options to scope things out before you move in together or pay an obscene amount of cash for an affair that may blow up before the debt is paid off. Because, if there are two things I’m certain of, they are that premarital counseling is a must, and that engagements are not about planning a marriage celebration—they are for breaking things off.
If there is anything we need to remember when we believe we want to find partner number two, it is that relationship number two could fail. Here are some good questions to ask yourself as you entertain the possibility of finding someone new:
Why am I looking for a new partner?
What do I think the new relationship will be like?
Is this person going to have a specific job/role in the new relationship?
What do I want in a new relationship?
Have I done the hard sorting of the old relationship issues—both the good and the bad?
If I can’t see any negative in the past relationship, why is this?
Am I willing to invest in some therapy to make sure I’m looking at this correctly?
What would it be like to not pursue a new relationship?
What would my life look like in both situations?
(If children are involved): Am I willing to put a relationship on hold until the kids are feeling secure with me and the new situation?
I often tell people to give it one month per every year you were in the relationship. But I’ve come to the conclusion that one month per year isn’t long enough. Sometimes the healing takes years, is painful, and doing single is the best way to have your relationship cake and eat it too.
When I began doing the work I now do within the realm of the grief community, I began to notice how many families used the funeral/memorial service as a weapon against those they did not like or wanted to exclude.
While families can hide dysfunction during life, it seems to jump out at you after the death. The dysfunction takes on many forms ranging from dictating who can attend the service, attending and disrupting the service and showing disrespect for others, stealing items from a home, denying items to someone who requests them for sentimental reasons, requesting something for vengeful reasons, challenging what the dead person would have wanted, and even denying the live-in partner the right to access the body!
I understand that death is difficult and that emotions can run high. I understand that sometimes the most mature people present are the ones that are excluded in some way, shape, or form. Sometimes they choose to be the adult in the situation and withdraw a request, not attend a service that they want to be at, or construct a means to mourning the death that will bring them closure even though they’ve been barred from a funeral or memorial service.
Sometimes it is the deceased one’s wishes that are being honored despite the fact that there is dysfunction present.
I find myself facing the question and asking: How do I honor everyone? How can families do the real right thing? I’d like for there to be one simple solution for this question and there isn’t one. Here are some suggestions that I hope will help smoothen the way and remove some of the “dys” from the functions that lay ahead.
Recognize that emotions run high. When you want to fight and be right, step away and remember that the person you’re fighting with is someone who has feelings as well.
This is a time for sharing and taking turns.
Think about the real reason from barring someone from seeing a body, from an end-of-life service, and from having something they treasure. Ask yourself why claiming a beloved object is so vital.
The memorial or funeral is not the end of grief: it is a way point in the process. The real hard work is left for after. The Jewish tradition does grief really well.
When You Must Exclude Someone
It is true that there are times in life when a relationship must be severed. Examples are:
· A person who has abused children and is barred from being around them
· A family member who is disruptive and cannot be reasoned with
· Someone who will not show up sober to a service
· Someone who has done irreparable damage to the deceased or the living
When to Record the Service and Send it to Someone
Technology is great! We can now record high-quality video on a good phone and send it off to those who can’t attend the service for reasons beyond their control. There are other reasons to send a video and these may include sending it to those on the exclude list. While there are legitimate reasons for barring someone entrance to a service, there may also be legitimate reasons to send a video of the service to the excluded soul so that they can attend from a distance. Remember that funerals and memorials are for the living.
When the living make poor decisions and do awful, inhumane things, it is difficult to make things right. My rule: if it’s in a legal document, you need to honor it. If it isn’t written down and it can be negotiated, come to a compromise. Sometimes we’re placed in a position of doing the right thing for both the living and the dead.
This is about making responsible choices and sometimes the best, most responsible choice for all can be difficult for some. Lead with love, compassion, and reason.
If there are religious reasons that a person must be buried rapidly, honor that. Can those who may not be present at the burial be present for other aspects of the grief process?
Some countries have laws. While I had to have my husband’s cremation on a deadline, countries may have laws that dictate a period for a service. These laws must be honored.
The last three services I’ve been involved in have all been by distance. They’ve also all been delayed. The delays have been from three to six weeks. Sometimes honoring others means being very flexible.
The biggies to remember are why, what, how, and who:
Why am I doing this?
Why am I behaving in this manner?
Why do I have to do it this way?
Why can’t it be done in a new way?
Why must I exclude…?
What would happen if we were to take a new approach?
What are the consequences of…?
How is this going to affect the future?
How can I/we make this situation best for everyone?
Who is best suited to handle…?
Who can bring balance to this situation?
Who needs to be honored in this process?
I understand that this is a difficult process no matter when it happens. I also understand that life isn’t easy and we all get rolled over at times. I’m hoping that this piece might offer the reader a chance to rethink the future. We all need to do it better so that we’re not in a squabble when we need to plan a functional grief process from the beginning and move it forward.
After the last post I made, I got this great idea on how to best communicate with Beth. It is a “chronicle” of sorts. I got the first one sent off and began to outline several more.
I woke up Wednesday morning to the message that I needed to call the States when I woke up. It was urgent. I knew before the end of the message what I’d hear. She had a horrible last twenty minutes of life with the liquid morphine not even touching the pain. I would not have wished her death on anyone. Sweet sister of the music, you are gone.
I sit here in the stillness of my office and understand that we’d said our goodbyes, “I love you” to each other, and that there was nothing left to say.
I sit with the finality of what has happened and know that I’ll never call over to her again. I’ll never hear her strong voice again. The words of parting were said and I’m fine with it. Dear Beth of the sewing machine, goodbye.
A prayer for those of us left behind:
When I see a begonia, I’ll think of you.
When I eat pumpkin pie, I’ll taste it for you.
When I run into the outrageous, I’ll react for you.
I’ll laugh, smile, and wonder at the fun you had.
I’ll never be able to pull a better April Fool’s than the last one I pulled over on you. It was sweet. It was inspired pranking! You deserved it!
We’ll never talk about ways to dress our feet.
We will never stand over our respective sinks eating pears that drip with the juice running down our arms. I’ll do this in memory of you each pear season.
I will always savor the two birthday cards you sent me here in The Netherlands. They were both gems. Each is special to me, and I will treasure them both.
You leave talented musicians behind. Your children have passed on the gift of music and now the family can really engage in the magic of playing music.
You’ve fought your last battle, and won. You didn’t lose to death—you won at life. You got out before you would have wound up in that bed you didn’t want to go into. You surrendered your body and soul and said goodbye. Good for you, sis!
I will miss you when I can’t call to sing you Happy Birthday. You won’t be calling here to see how I am.
As the sun sets and leaves the rose color in its closing act of the day, I’m thinking of the sunsets we witnessed on the beach. The days of our childhood when life was laid out before us, and now it has ended for you, Beth.
I can’t bring you back and I won’t, because that would be regression of the worst sort. I love you.
The lemons are now gone. It sucked while you were alive and in pain. I’ll replace the lemons with pears and apricots, just for you.
One last thank you that you’ll understand: Thanks for throwing the bash. It was unforgettable.
The WhatsApp came in while I slept. It was from my sister-in-law, telling me about her Easter visit with Beth.
I read the text and cringed, fighting back the tears that came up because I had a meeting in five minutes. Then I thought: I’ll process this after.
Truth be told, this sucks lemons. I know saying “sucks” isn’t professional. Cut me some slack—my sis is being eaten alive by this thing called cancer, and I’m going to say “suck” because this word describes it best.
I’m witnessing the decline of a woman who attacked her life with energy, maybe took on too much at times, and loves her family deeply. This leads me to the “it isn’t fair” thing.
Who says life is fair? Where is that written? OK, maybe in the land of the narcissist? I wish life were fair, with quiet lives lived out and peaceful, convenient deaths that we’re all prepared for. It makes me think of that Star Trek: The Next Generation episode where Deanna’s mother, Lwaxana Troi, meets this guy who is scheduled to return to his planet to die because his society doesn’t what want to impose or inconvenience itself with the brutality of old age. Really? Wow!!
So yes, watching Beth, or hearing about it, does suck, and my job is to figure out how to handle the news in a reasonable manner. So, I’m stuffing until I can let it out, blogging, and crying because that is what I need to do to process this ugly, upcoming death.
In the first post, I mentioned that I wouldn’t be flying over to see her. She’s weak, can’t walk, and uses a wheelchair to get around. She’s in pain constantly. She’s on drugs and sleeps in two-hour intervals. One of these days, she’ll slip into a gentle coma and then die. Her reality is that she’ll slip away, and my reality is that flying there would be useless because I’d be sucking energy from her. Visits suck energy when you’re sick. If my nieces, who are now there more often, find a window of good phone time, I’ll call. I can’t help but think that even a phone call at this point will suck energy. Time to use only e-mail and have someone read it to her, as she is also blind.
As I sit here with the feelings gushing out, I can’t help but cry. My Beth, my older sister who played the piano while I sang when we were young, my sister who could sew up a storm, is dying, and I’m here and not there, and this is hard. No, it isn’t fair. No, why must she suffer? Why doesn’t her body shut down and let her leave? Once again, I see lemons. I can’t hold the tears back, and I won’t stop them now. Sweet Beth, I’m sending buckets of love, a gentle hug, and a song.
I’ve debated making this post, but after sitting with it for over a month, I’ve decided that I want to give voice to what I’m witnessing from an ocean and continent away: my sister’s death process, or rather my process of the end of her life.
Last year at this time I received a phone call from my sister, and she informed me that she had liver cancer. From the moment I saw her request to return her call, I knew, and I knew that this was bad. I knew that I’d be hearing that she was dying, and I knew that I’d be witnessing this from a distance.
I returned her call and yes, it was bad. She said she’d do a round of two of chemo and that should take the tumor out. By late summer the call came again: surgery was scheduled for as soon as she could build up the body strength to withstand said ordeal.
The tumor was gigantic; it was the size of a small watermelon! That thing now out of her body, she settled in for recovery and did some traveling to see kids. She ended the year feeling OK.
January rolled around and she wasn’t feeling OK. The liver had been invaded with nasty cancer cells, and once again she began an aggressive treatment. This time it was worse, and by the end of February, with the protocol not working, she elected to check into hospice care.
This is where things are now. I talk to my younger brother these days and let him tell me where things are. Why do I do this?
I talk to him because she is now so drugged up that she can’t talk. My last conversation with her was no more than three minutes. This isn’t about me meeting my needs: this is about me allowing her the space and freedom to die and to not cause suffering.
I’ve now had two conversations with her. The first one was a conversation in which I wanted to tell her that I loved her. As she shared her story of making the decision to die, I understood two things: this really wasn’t about me and I needed to respect whatever she wanted me to do. All she asked was that I not call too often. I could do that.
There are times when we revisit the “if only” space; I didn’t want this process to involve a revisit. Closure means saying what is important and realizing that if we do that, we’ll be OK. Closure also means that we allow for others to be in their own space with their own needs. For Beth it means granting her space to sleep, to decline phone calls, and to die in a dignified manner.
My part is to make peace with what she wants on my time. I hung up from the first phone call at peace. The next day I was depressed. This process is difficult and raises challenges for everyone. I realized that this would be my process: engagement and needing to be sad while managing feelings around knowing she is suffering. I went through this in 1991. The difference is that I was caretaking for my father and had moved back into my family home to be there for him and my mother. Seeing it in person is easier than witnessing a loved one’s death an ocean and continent away.
To Travel or Not to Travel?
Should I board a flight to see someone who is dying? As I thought about this, I have weighed cost, what my goal would be, my needs, her needs, and pandemic safety issues. I could not justify doing a flight to the U.S. on any level.
Will I regret this choice? I don’t think so. Which leads me to the next point of thought.
Certainty vs. Uncertainty
As I have grown as a person, I’ve faced the fact that nothing in this life is certain. It has also caused me to rethink death and what lies beyond. While I want to believe that life goes on in some form, I also understand that this type of knowing is not knowable.
Do we go off to a heaven? I don’t know. Do we become a part of the cosmos and continue on in energy form? I don’t know. Do we shut down and cease to exist? I hope not, and yet I don’t know. My life experience tells me that anything is possible. My seeing death up close and personal allows me to hold space for all options.
For a person of faith, the above might sound a wee bit odd, yet I hold the belief that we won’t know until we know, and so I sit with a wee bit of healthy existential uncertainty and curiosity. As my mother used to say to me, “Life is not certain, eat dessert first.” While I don’t really do that, but see the humor in the saying, the fact is that sitting with Beth’s approaching death serves as a reminder that as much as I want to have that certainty, it can’t be had.
I engage the possibility of life and death on multiple levels. I’ve found that in doing this, I’m driven to live the best life I can and to do the best I can do while I’m here on this planet. Watching Beth challenges me to hope and to hold all options open.
As I type these words, I understand that I’m fine with her leaving because I’ve said the one thing I needed to convey to her: my love.
Six years out and I’m still amazed at this process of walking out of grief. I’ll confess that on the 28th of August, 2016, when I went downstairs to get a late lunch and found the note, my concept of grief was in for a radical change.
It wasn’t that I didn’t know about people who grieved the loss of other things; it was the reality that the loss meant something different to me now. This was my husband—my marriage—and it was different. I’d mourned the loss of a parent, grandparents, a sister, our four cats that we’d had to put down, another graduate degree, a home, not having biological children, and friendship. I thought I understood what grief was about. I wasn’t wrong, and I wasn’t right either. I needed to learn some new things.
My father’s death was the one time I was prepared for to death enter my life. I was privileged to serve as one of his caretakers until he entered the hospice unit to stabilize and to allow his body to shut down gracefully. Even that final week was amazing. He’d lived a good life and was ready to die. It was, for me, both difficult and celebratory. The feelings of loss came about five years later when my husband entered my life. I learned for the first time that grief and mourning may enter our lives years or even decades later. I worked through the sadness that my father would not know Jon. This time—and this death—was radically different. This wasn’t easy at all: this felt like grief on steroids.
Five months later my mother died of a heart attack, and I’m thankful that our relationship was one of friendship, giggles, honesty, understanding, and mutual respect. The family had to laugh that she died on Friday the thirteenth. Her death was overshadowed by Jon’s death.
My understanding of my own process now is that it took two years of dealing with the trauma to be able to adjust to a new life alone. Stuff sets you off after a suicide, and stuff set me off! I was in no shape to work. I wasn’t ready to socialize because things got triggered and I’d start crying. It took year three to begin to stabilize. There was so much to do, to understand, and to discover. While time is an ingredient in grief journeys—mourning and doing the work that needs to be done—time itself is not the healing ingredient. Our inner strength and reserves are the healing factors.
Somewhere along the path we walk, the existential crisis rears its ugly head. You may or may not be a person of faith, and that doesn’t matter. Sooner or later we all question our known reality and wonder if our certainty or uncertainty will stand up in our grief process.
One of the huge lessons most of us learn about ourselves is that questioning is normal and healthy. Questioning can make for a robust inner dialogue! Asking ourselves both simple and deep questions propels us towards resolution in our process. This didn’t occur for me until I was in year five of this process. I wasn’t able to think clearly enough about some of the questions I needed to ask myself about our marriage, relationship, and where we were headed in the future. I realized that the questions I was able to ask myself five years out were only possible because I was stable, had done some basic work, and had returned to the work I loved. It wasn’t time that had carried me here: it was my personal stability and the work I had done up until that point that opened up this new avenue of questioning myself.
Looking In, Calling it Out
The universal cry of most who find themselves in the grief process during the early days is “When will this ever end?” The pain is unbearable, raw, unsettling, and triggering. In the beginning we might be triggered hourly or daily. It is true that with time things change, and with time we eventually arrive at a place where the grief is still present, but the texture of the grief softens and allows us to relax with it.
What I’ve noticed over time is that most friends and family forget the “Please Do” items that most of us may still need a year—or four years—out. It is as if the funeral/memorial and dinner afterwards are over, and so is the requirement to show up and offer comfort. Is it any wonder that down the road there is a collective cry of rage from the grief camp? What, do people think this is a simple process where, once our beloveds are buried, cremated, and the ashes sprinkled, it all goes magically away?! That type of closure is overrated.
There is no grief formula. Grief is as unique as we are. How we feel, think, and behave are all part of our personality constructs. What we each do with loss—whether it be loss of vision, a faith transition, or loss of a life partner—will be different from each other.
When we peer into the window of another’s existence, we gaze on them with our life’s prejudices and experiences. As we do this, we’re often tempted to offer up what we want or need rather than what the person who is in a state of grief and loss is needing. Please, no more “I’m sorry for your loss.” Every time I hear that, even on a TV show or somewhere else, I cringe with the thought of “Can’t you think of something more authentic to say?” Have you ever thought that the person, while grieving, may not be sorry? Sometimes death, divorce, loss of a job, or something else might turn out to be the gift we needed in our lives, and it may have been a gift for them as well.
The Window Inside
What people need to know about looking in is that you are offered a glimpse—and only a glimpse—into our passing along the path we walk. At any moment it may change, because at any moment we might discover some piece of life-altering thought that sends us sailing into new territory. It will never fully be over. How do you move on without holding the memory of the one you dearly love? We mourn the loss of what was and could have been. We anguish over the fact that we might have made a really lousy life decision and it brought more pain than happiness into our lives. We hold the memory of our beloved pets in our hearts. We speculate about what our child’s life would have been had they lived into adulthood.
You look in and ask, “Aren’t you over it yet?” We must reply that “No, I’ll never be over it because it all involves love, and love is something precious.”
We’ll draw the curtains closed and continue forward. Ultimately, grief is a thing of the heart and soul. We’ll let you in when it is safe and we’re strong enough to hold you in our presence once again.
Losses in our lives happen in many ways, and my greatest loss happened while I was trying to get to somewhere else that wasn’t on my agenda, or at least not in print. It happened in a way I won’t forget: a walk downstairs to find an altered life. A note on the dinner table telling me where his body was. That was the part of the promise he did keep.
We write scripts for our lives, and when they are interrupted the jolt can be confusing and difficult to understand. While we’re making our way along the road, the demons interrupt our peaceful walk and give us the boot off our carefully manicured path into something more like sludge, mess, and unexpected confusion.
At first, we panic, and then we try to extricate ourselves from this place, only to find ourselves pulled further into the mess of the sludge. When we realize that we can best exit the sludge by remaining calm, relaxing, and working with it, we’re free to embrace it. We can then deal with the mess in this new place. We figure out that the best method for getting free from where we are now trapped is exploring it for alternative exit options. That is how most grief and loss journeys begin: a surrender to the unknown.
I got out of the immediate sludge state and realized that there was a mountain in front of me, and that I needed to go through it to reach the place I needed to get to. That was both a relief and rather terrorizing.
With the unwanted interruption to our lives, we forget where we were headed, focusing on the path before us that has become cluttered with boulders, fallen trees, and strange critters that inhabit the once pristine path we thought we were on, and realizing that we’ve been transported to a much different place altogether. Where are we? What is this about, and will it be a help or hindrance?
No, we’re not in Oz or anyplace like it, though a part of us may wish for ruby slippers that we can click to take us magically back to before we wound up wherever this is now. We don’t get the slippers. Instead, we receive a walking stick that will come in handy in turning over the rocks, giving us leverage to lift the heavy trees that block our route, and in testing the strange new critters to see if they are friend or foe.
It’s taken several minutes to construct this, and yet the descent into this place happens instantly. We’re just not aware that within seconds of hearing they’re dead, “I’m leaving you,” “I’m moving out to pursue…,” or whatever the loss is, we’re sent by our mind into this place. As we grapple with it in those first few moments, we realize that our control is gone. Will we ever be the same? Will our world ever feel the same?
The Answer Everyone Wants
In this place we ask: When will it end? And when will things return to normal? The honest answer that we eventually discover is that we’ll develop a new normal, discover a new life path, and renegotiate what our personal universe looks like and what it is filled with. We forget about the old somewhere that had held us captive and begin searching for a new somewhere else. The catch to this search is that things no longer work the way they once did. The topsy-turvy has flung us into the unknown. All we can do is thrash around until we find something to grab onto that feels stable.
We start to learn that the tears, the missing, and the uncertainty will fade over time, and in their place the texture and quality of what is present in our lives changes. Slowly, we stop asking when and start focusing on the how to of this new place. This leads us to finding a support system, a new village of people that is populated with those who will become our new friends. They understand where we are! They’ve been in the sludge, gotten out, and faced their own mountain. They’ve dismissed some old village residents due to the fact that they left the village or are not able to attend to the needs in the village at this time. We find a therapist who speaks our language and we seek out spiritual direction, or stumble into another path altogether. As we gain strength and our concentration returns, we begin reading books and are able to question and act on those questions.
This new place of discovery is exciting, scary, and wide open. Oh, the options that we can explore! Slowly, the places we were headed fade away, and we’re left only with new things to discover.
You know how people say that we’ve changed? We have! If we do the work of grief, loss, and pain well enough, we reinvent ourselves. There are old things, new things, and a bunch of creation waiting to spring forth. It can all be good. In the meantime, the question we wanted answered disappears as we become involved in the process of creating new life within ourselves. New life and meaning are unique to each of us.
The tears and the missing are still present. They’ve taken on a new form and texture. For me, it was somewhere in my year three that I noticed the real change. How did this happen? It wasn’t about time; it was processing and a world view change. It is something we experience and understand due to the work we do around our grief, loss, and pain, effecting change deep within.
Noticing the Gift
For some people, the loss and the grief that are encountered become a gift. What? How can this be? I’ll admit that on August 29, 2016, if you had told me I’d be typing these words in 2021, I’d have had said something to the effect of “You’re nuts!” I’m typing this and I know I’m not nuts. Telling someone at the beginning of the process that change will happen is counterproductive to the process. There are some “please do’s” and “please don’ts” that are essential to observe.
Relationships can trap us, cause us to shortchange ourselves, or make us second-guess what we want in our lives—to name just a few of the things that can happen. The fact that she cheated on you and didn’t want to work it out is sad. After the heartache passes, a new discovery of freedom comes.
He or she is now gone; the love you once had will always remain, and now you are asking new questions. You want something different from before, and finding it is a good thing. You haven’t changed; you’ve grown! You are beginning to trust your own knowing, and this is an essential component of finding the new place of existence.
The gift of the tragedy is not pleasant. We are called to understanding through the unveiling of new options that we truly have choices if look and access them in the present. It is what we find buried in the rubble that was once sitting out in the open, waiting for us to discover it for the first time.
We couldn’t see it where we were because our understanding of our lives was focused on the life we had then. We weren’t stumbling along the path, attempting to find the new points of entrance into the new place that we need to get to.
I know some who have needed to step into employment for the first time in their lives and now report feeling fulfillment in a way they never have before. I know others who took the chance of a new career. Somehow, the lack of security allowed them to risk big! For others, it is doing the same thing with fresh new insight into the things they value most. For me, it resulted in several things. My favorite is that I returned to school for a certificate in spiritual direction. I love the program! Would I have discovered this had I not been widowed? NO! It took me moving to a new place and finding a new path to walk to do what I’m doing now.
Along the way, we employ new navigation strategies, discover our “rose rooms,” and come to an understanding that the interruption that occurred on the way to somewhere else, while tragic, has become a touchstone in our lives.