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.