I love going to Disneyland. There is just something about it that always puts me in a good mood. When I was in law school, a friend and I would make a day trip down to Disneyland when we were really in need of stress relief. Since then, I have continued to love going there as an escape from everything else going on in my busy life.
As it became clear to me just how much the chronic pain and fatigue of Fibromyalgia was going to continue to affect every aspect of my life, I was resentful of giving things up and unwilling to add Disneyland as one more thing on the list of what I could no longer do. I continued to go even though it made me tired and achy, often for days afterward. I continued to go even though I could not stay as many hours in a single day as before and even when I realized that there were many rides I could no longer tolerate. I learned to pace myself and take breaks, to leave when I felt “done,” and to sit out some rides. I learned how to access shorter lines through use of the Guest Assistance Card, so that I would have a little bit more time before becoming utterly fatigued. I learned to eat more protein and healthy snacks when I was there to increase my energy. Most importantly, I learned the value of friends who not only enjoy Disneyland as much as I do, but who are willing to put up with all the ways that my disability often impacts our mutual experience.
But despite all of those adjustments and lessons, I was reluctant to use a wheelchair even when I was exhausted. There is just something about the way that people look at you when you are in your 30s and seemingly healthy and in a wheelchair. I’ve experienced it when I’ve used a wheelchair in the airport due to extreme fatigue when traveling. There’s something in those looks that seems to be a combination of disbelief that you could possibly need a wheelchair mixed with pity that you maybe actually do.
As a disability advocate, I know that we must fight for a world where people with any disability, invisible or not, are included and accepted. And I know that this fight requires awareness and exposure. I always feel a little sad when I hear a parent who doesn’t want anyone to know that their child has a disability, because I want us to be a society where it wouldn’t matter who knew that. Yet, when it came to my own disability, I often wanted to do the exact thing I would hope my clients were brave enough to resist — hide that part of myself.
So there came a day at Disneyland when I needed a wheelchair. I just couldn’t do it any longer, and because someone was visiting from out of town, I didn’t want to make everyone else leave. Not that day. That day I chose to stay. I wish I could say that as soon as I sat in that wheelchair, I realized that it was okay; that I was okay even if my friend had to push me around through the park because I was so tired I could barely move; that it was okay if people stared, if they saw. That’s not what happened though. Instead, I sat in that chair and the reality of a life changed, a previous life lost crashed down on me. I cried as I thought about the person I was now and what I had lost. It may seem shallow and unimportant, but I grieved for the person who could just go to Disneyland and enjoy herself without worrying about pain and fatigue.
In the end, of course, it really was okay. No one stared, because other guests were too busy enjoying themselves. My gracious friend pushed me everywhere and my other friends were most likely grateful that we weren’t moving quite as slowly as when I had been walking. I made it a few more hours, and I got over my embarrassment.
In hindsight, it was an important moment because I learned not only that it was okay to use a wheelchair if I needed one, but also that just because I did that did not mean I was admitting defeat to my disability. It did not mean that I was becoming more disabled, only that in that moment on that day I needed the assistance. Day by day, one step, or wheel, at a time, we make it through and do the best we can with what we are given in the moment.