What it's like to live with a progressive neuromuscular disease

Saturday, August 8, 2015

Damn you, Acceptance

It’s been four years since we moved into our new home. Our first house. We knew it was the perfect fit when we found it. Big enough that we don’t feel like we’re on top of each other, yet small enough for me to not feel stressed walking from one end of it to the other. It also satisfies our joint need to live somewhere that straddles the line between residential and urban. When you hang out in the front yard, you feel the comfort of being on a tree-lined street with houses on all sides. But walk one long block down the street and at your disposal are restaurants, coffee shops and even a mall with a movie theatre.

Four years ago I was physically progressed enough that I felt worried about buying a house with even a few steps to front door. Thus, I never really let myself fantasize about actually taking advantage of the convenience of our location. Sure, it was great because it meant it only took me a minute to drive to buy the kids’ shoes, but I still had to deal with the parking and all the hassles that come with mall shopping. Then, last year, I took the plunge and moved through another level of acceptance and bought myself a shiny red “mobility scooter.” It doesn’t get much sportier or zippier. Most random people who see me on it ask how they can get one, without realizing it’s not purely for recreation. (Side note, it amazes me how many able-bodied individuals look for ways to avoid having to walk.) It always feels good when I can get away with not appearing disabled. It feels like a relief. We’ll come back to that in a bit.

Last night, my husband and I had plans to see the movie, “Trainwreck.” Yes, my obsession with Amy Schumer is still very alive. Because the kids are away and we weren’t on babysitter time, we found ourselves running a little late. And the thought of having to drive and deal with parking while rushing was so unappealing. And of course, the movie theatre (which happens to be our favorite, the Landmark) is only about 2.5 blocks away. My husband, for the first time ever in the last four years mentioned that it would be nice to be able to walk. Not in a disappointed way, not in a resentful way, just in an honest, non-judgmental sharing kind of way. I realized I had never even thought about that. Because I had never let myself. Then it hit me-if I didn’t have my disease, would we be living the dream and walking to dinner and the movies all the time? I had never even considered it. But Noah, on the other hand, confessed he does think about it. He also confessed, somewhat jokingly but also seriously, he sometimes wishes we had a simple fold up wheelchair because then he could realize his dream of us being able to walk places. What? I mean, how could he be so level-headed and practical about it? Sure, what he was saying made sense, but slow down a minute!  Did he expect me to just get on board with that plan? Of course not. But could I see how it makes sense that he’s just patiently waiting for me to get to the next phase of- wait for it-acceptance? Yes, I could.

Instead though, as we stood in our driveway contemplating what to do, I told him to run in the house and get me my walking sticks. I probably use my cane about 30-40% of the time now, depending on what I’m doing, but I knew if I were going to take on this own personal challenge for myself, I would need the sticks (Leki trekking poles to be exact).

We started down the street, each of us regularly  wondering aloud if Noah should just run back and get the car. My stubbornness, of course, would have none of it.  It felt empowering. It felt like a gift I was giving my husband. He didn’t need it nor did he even ask for it. But I wanted to give him the experience. And it was actually okay. Until…

…we turned onto the main boulevard. People everywhere. Couples, families. Potentially people I knew. Patients even. I wouldn’t say I felt panic (luckily that emotion’s not really my bag), but rather extreme discomfort and self-consciousness. Not only did I have two trekking poles while out on a Friday night date with my husband, but at this point my gait is /feels so exaggerated, so obviously off. Dare I say weird? I felt embarrassed. I felt like I didn’t want to make eye contact with anyone. I felt like I didn’t know if I could go out like this. Noah said he would hold my poles and I could just hold onto his arm like we usually do. And then I felt ashamed. Disappointed. Saddened by the fact that maybe I’m part of the problem?

What is all of this? Where does this come from? When did disabilities-or better yet- when did  being different become such a bad thing? Something to fear, to try to hide, to feel embarrassed about? Is it me and my own personal hyper-self-consciousness I feel at times with this disease or is it born from a society where it doesn’t always feel safe to be different? Both? Neither? When did we start caring so much about what others think? Obviously, one interpretation would be that when we are uncomfortable with what others may be thinking about us, it’s because we aren’t fully comfortable with it ourselves. But I pride myself on putting it all out there. On not caring what others think because all that matters is how I feel about the life I’m living. Right?

I mean, didn’t I just post a blog one week ago about reaching acceptance? What the hell?

Lo and behold,  it turns out that was just the first layer. Of apparently many. Damn it. It sure would be nice if I were there already.

I’m not going to use this post to  try to solve any questions or provide any deeper understanding of why this is such a pervasive, universal experience, disability or not. Maybe next time.

For now, I’ll just say that we thoroughly enjoyed the movie and I walked all the way back. Turns out when I’m not in a rush, my disease is a whole lot less annoying.

Oh and I’m really hoping for my sake that last night was the last time I intentionally reserve us movie seats towards the top of the theatre, up those treacherous stairs.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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