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Thanks, but Not This Gift

Late Wednesday I asked Jon: “If you could give me a gift, any gift, what would it be?” I wasn’t ready for the reply.

He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health, and I was stunned silent. Two days later and I’m still stunned.

I’ve had this petite, not-quite-a-gem of a body for 56 years now, and while I don’t appreciate its lack of functionality at times, I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE (Pseudoxanthoma Elasticum) that has made life hard. No, I don’t like that at all.

I’ve made the comment before that if I could see normally, I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?

About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year, the things that really matter to me have changed.

As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought; it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek, and the lesson that it teaches.

In the episode, Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy, functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.

Instead of pontificating on all the lessons I’ve learned (and I could do just that ), I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you?” How does thinking about this alternative “you” change who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.

I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.

In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.

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.

Dear Parental Units

Dear Parental Units,

It seems that I’m the recipient of an opening in the space-time continuum, and being as I’m a very brainy baby, I’m going to take advantage of it. I don’t know how long I’ll have to say all of this, so here goes something!

I just popped out and I know you are so glad that the pregnancy is over, that you are through labor and delivery, and that I have ten fingers and ten toes. My head looks normal and I’m breathing and crying. All is well (for now). Enjoy the next six weeks because after that, you all are going to enter a world that you don’t know you are unprepared for. Good luck—we’re all going to need it.

Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff, and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present, and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and she’s going to try to help you deal with it all in one day, I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it, and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.

So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.

I Can Feel That I’m Getting Older.

Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me, and when I shed tears, cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently, and you will hide the pain you feel. I’ll grow up and gain insight into this, and it will be alright.

While I’m on the subject of things that hurt: Don’t trust caregivers. I know that in the 1960s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. All three of us are victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.

I need to tell you that you began to do some good things for me in the late ’60s and early ’70s. You need to pursue those things even more and give me the jump-start on my career planning, and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.

I’m Feeling Even Older as I Write This.

Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.

Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise—trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.

As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel, so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.

You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing, but I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.

Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these, and even though the dance will be hard, it will plant some seeds.

I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.

When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book, or maybe someone will beat me to it.

Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.

Oh, Something Is Happening

Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get-to places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that.

The Rose Room

As some of my readers know, I’ve just painted and will be painting the rest of the space soon. There was one room that has gone untouched. It is a beautiful rose color, and in it there are many treasures. It is the Room of All Things Gail.

On the walls there are works of art, and each piece has a loving history.

There is a painting that my aunt Ruth did way back when that I treasure. I love it because she let me have it, knowing how much it meant to me. There is the counted cross-stitch that my friend Leann labored to create for me. It is beautiful, and I cherish it because she performed a labor of love when she stitched it.

Along with that, my older sister Beth has a place of honor with the picture that has been with me since childhood. It is a Gail version of The Princess and the Pea. She put me in a blue dress on top of many mattresses. Each mattress is a different color and design. I love this so much and someday it will go to one of her daughters.

Hanging in the Room, and moved from the bedroom, is another counted cross-stitch. My sister-in-law Peg made this for our wedding. It, too, was done with love. Shared love is the only requirement to be placed in this Room.

I also have two stained-glass pieces of art that my mother-in-law Mary made. I am so thankful to have them.

Hanging in another place of honor is the wedding bouquet that my three sisters-in-law Peg, Bev, and Rebecca created for me.

There are two parasols that Jon hung up. I’ve mentioned in “Sneakiness is Happiness” that he backlit them for me. That is a day I will remember forever. Oh, the love that filled the space that day!

The Room holds objects that span the years of my life and are sacred to me. It holds something from a friend who I came to know in the last five years of my life. That friendship has given me many gifts of thought and hope. Thank you, Betty. The Room is my place of healing and restoration. I can sit quietly, get ready for my day, and read in that room.

In some ways the Room has existed for a few years, but in other ways the Room is new. The Room in its present form emerged into its new role in my life over the late summer and early fall. It started with knowing that I wanted to place a new piece of furniture in the Room, and as I envisioned where it would go and how it would feel in the Room, The Room grew in purpose and my understanding of the space began to change. What I had used as an office during Jon’s life would be no more. My office was to move to the other side of the house where the sunlight can stream into it and I can see out into a larger world.

This Room called Gail is a place of healing and hope. This is where my heart is found, where the healing is strongest, and where, when I enter, I find the most peace.

For those of you who read “Raw” or listened to the podcast (Parts 1, 2, and 3) that I posted late in 2017, my healing journey has been both traumatic, challenging, amazing, and in some ways even peaceful. I suppose that it has been a combination of watchfulness, the love and caring of others, and the understanding that this type of pain and hurt only dissipate when faced head-on. It is my tiny sanctuary, however, that allows me to find what I most need in my heart.

It is the realization that I can say a loving goodbye to someone I have loved deeply. He is not in pain now. It is also an acceptance that I can hold on to his memory in new ways.

The creation of this space has done its secret healing and holds a place in my soul that I didn’t understand until I let go to find it.

I don’t think that there is any single or correct way to heal from something like this. I think that the best healing comes from following your heart and soul and listening to your gut. Healing involves talking and finding a supportive listener. For the listener, you need to choose wisely. Find someone who you feel a bond with, someone who respects you, and who you respect. If there is not such a person in your life, then find a good therapist who understands both grief and the loss involved with a completed suicide.

Healing is about recognizing that you will have really good days, really bad days, happy days, and days of hopelessness. Healing is about allowing the depression that will come because of the death that has entered into your life. Sit with the depression for a time, and if it doesn’t fade, seek professional help. Healing is about understanding that the pain will diminish and calm. Healing is about loving yourself. It is about seeing yourself in the mirror as “enough”: no more and no less than “enough.”

Healing takes strength and courage. It is your own unique journey.

As I spend time in this healing space, I’m discovering its complete power. It is the power of the lit candle in the darkness. It is the homing beacon that steadies me. It is that place that tells me that I’m loved, both by myself and by many others who I both know personally and who I only know because of the Internet.

To walk through the process of healing is also to be able to look out the window on a grey day and see the sun that the clouds hide. It is a knowing that you and only you can fully understand. It comes from traveling through it and stumbling along the way. It happens when you stand up once more and say “AGAIN!” You are never beyond, but you have moved on.

Forward movement takes on many forms. Sometimes it is a return to the old haunts, and other times it is the unexpected and unfamiliar that call to the soul. In many ways, the Room of All Things Gail was totally unexpected to me. It was a feeling that I had to create a place of sanctuary.

As I write this, I am in my new, blue office space surrounded by books, my sand tray collection, and hope. This space is one I’ve claimed as mine. As I look out of the window, I see the stormy skies closing in; I see the other homes in the area. Most of all, I see LIFE. It is good. It is peaceful and this is my space now. This is the room where he wrote the notes. This is the room where he spent so many hours. And yet, this is not “that room” any longer. The painter came one November day and covered the rich green walls with my beautiful blue color. The painter took nothing away but what had to go. It doesn’t hurt like it did a year ago. This is a place I come to work and to enable the healing of others. This room also holds some treasures.

While blue is the color of my soul, it has not been the color of my deepest healing. That has been rose. That Room is just a few steps away from where I now sit working on this, and I shall go there to feel the warmth of the sanctuary: the Room of All Things Gail.

As I sit here, I realize that I could not have created this lovely space without the Room of All Things Gail. It was the power of healing that let me say goodbye to what had been, and greet anew what was to be. It was the power in that Room of Rose that set me on a journey to claim the space I’m now working on. It was the realization while sitting in that space that I could, and should, listen to my heart and follow my desires to create what I wanted for myself. Thank you, Rose Room. I think I’ll go there now to pause, give thanks, and continue the journey.