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Leaving the Safe Space: Part 1 of the Holiday Journey

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.

Night Walk and Maira

I guess you could call today “Maira Eve,” and as I have been thinking about my life and events that have led to this very day, I thought I’d update the original posting. This post tells of how I came to understand that I needed to have a dog.

For the past four years I have referred to Maira as “Eyelette,” as all things living need a name. I’ve even had a tiny transitional object to pull out of a drawer or set upon a desktop when things seemed grim. Right now it just seems surreal. This REALLY is happening!!

It has been a long journey, and tomorrow at 0930 I will be at KNGF to begin my two-week intensive work of becoming a partner with Maira. What is in store for me? I don’t fully understand at this moment. I am packing my bag and will find out in the morning. So now for those who will walk with me and remember that night of several years past…

Night Walking

Late this last November, I found myself waiting for my husband; we were to meet at the shopping area. My iPhone went dead and I was scared. It was dark and windy, and I knew I’d have trouble walking anywhere alone. I almost left the stairs, where I was sitting in hopes that he’d look for me there, to go look for our car. I should have known that the car was there—where it always was. But fear kept me on the stairs. Had I left, I’d have found the car—and safety. I was to discover that I had been doing a dangerous dance on a rooftop with a skylight.

I finally decided to walk to get to the bus. I was scared. The thing about being half blind (or so I thought) is that bumps in the sidewalk aren’t your friends. Bumps can really hurt you. So I walked in the street, but then the streets here in Europe can be bumpy as well. The streets everywhere are bumpy. It just doesn’t pay to try to stay safe or sane when you can’t see the road. I was walking SCARED. In my mind I was dancing on a skylight and trying to calm myself and telling myself that I would be just fine. I was scared because about ten years ago some nut with night blindness hit me and I fractured my L1. I was scared for some good reasons. In feeling the fear, I realized that my vision was far worse than I had ever admitted to myself.

Normally, husband is my “Seeing Eye Hubby,” and I depend on him. But hubby was in some unknown place and I was scared. I was all alone, and there was no one to help guide me. I made it to the bus, which was a good ten minutes’ walk. Then I had to face the walk home, which in many ways was even more terrifying. You know you are severely low vision when you have a dark street with a dim light and you think that you know the road but don’t know where the bumps are. All at once I realized that I didn’t know the road at all. I had to make a decision: walk fast or walk slow? I just walked. All I wanted was a phone and a warm house. More than that, though: I didn’t want to fall on my face.

After what seemed like a horrible forever, I could see the house and then the car and the door. I crashed through the metaphorical skylight. The tears and mixed emotions exploded within a safe house. I was grateful that I had made it home. Jon, who was upset and concerned, came to me. At that moment I realized that I would never feel as safe as I once had before. That crash was just the first.

Life can be a terrifying dance routine with a choreographer gone mad. That is when you slam through the skylight. This is when your soul sinks and you discover that you are frail. Then, and only then, can you realize that you have been dancing on a rooftop with a skylight.

In the next days I began the search for the “doggie” school. After a week of looking, I knew that I needed to approach KNGF. I made the call. The darkness has served as a reminder that I am not safe. The naive woman who was dancing on a skylight is no more.

Today

Jon is downstairs cooking dinner and I am wondering what will unfold next. As I look back over the past few years, it has been quite a ride. The Loo Erf, the beginnings of a new private practice. It will be a new dawn in the morning. I can’t wait!!!!

A Sad Update

I am going to post this to my blog because it will reach more people faster.

On Monday, 23 June, I went off to the KNGF with high hopes. Maira is a great dog, but she will not be mine. On Thursday the 26th, I was admitted to the UMC-Utrecht neurology unit. The short story is that after all of the time I spent planning, I can’t have a dog.

I am totally bummed and depressed and feel like a piece of my world got yanked out of my life. It did. But, I will move on. For now, it is important that I accept and take the time to cry tears of sadness.

I am thankful for some great doctors. I am thankful that I am alive, and that with care, I can stay that way. I will say more later. For now I am just trying to enjoy my first complete day home from “the big house,” as Jon and I call it.

With much thanks for support,

Gail

The Relationship File

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.

I Miss

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.

Dear Helpful Soul

Dear helpful soul,

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.   

Offering Assistance

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.