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

Friday, January 6, 2017

Rubber Bands and Trapezes

Three and a half years ago, I booked a family trip to Club Med, Ixtapa. It sounded ideal – an all-inclusive beach resort with non-stop activities for the kids, an easy direct flight from LA and a time change in the right direction. My sister and her own family had gone for years and raved about it. I wanted in on the action too. When I told my sister about our plans, she gently warned me that it may be hard for me to get around such a large resort. I initially dismissed her concern, in part because that’s always my initial reaction when confronted by yet another disease-imposed limitation, but also because I figured (hoped) she was just staying true to her lovingly over-protective big sister self. But after a few weeks of thinking more seriously about it, I canceled the trip. It wasn’t a major tombstone to add to the cemetery of losses, but giving up on a vacation because of this disease was a tombstone nonetheless.

When I let go of the things I want but can’t have, the wanting part almost always lingers. Once I’m done grieving the initial loss, I start to imagine alternative routes to the same destination. The most extreme example of this process was when I tried to let go of wanting a second child. Only after fully mourning the fact that I could not safely carry another pregnancy was I able to consider other ways of fulfilling my dream of having two kids. (For those who don’t know, we used a gestational surrogate to have a 2nd child. For the record, it was, hands down, the best decision I have ever made in my life.)

It’s the process of finding this line between the emotional and the rational, between how desperately I want it to be and how it actually is. It’s the line between living in sorrow on the one extreme and denying emotional pain on the other. Finding that line determines to what degree this disease interferes with my participation in my life.

So, when I started thinking about our winter vacation this year, Ixtapa was still nagging at me. You might imagine that with the downward progression my body has experienced in the last 3.5 years, I would have crossed it off the list. But in that same time, the ways in which I navigate my body in the world has changed. I now use a cane full-time and I have learned how to tolerate the extreme emotional discomfort of being wheeled around in places like the airport, in the name of practicality and efficiency. So I reconsidered whether I could make this vacation work.

When I called to make a reservation, I asked if they had a wheelchair I could use while there. They said they did (with a warning that it was a bit old). That was enough for me to decide to go for it. I felt proud of my rational self and my willingness to take advantage of available resources, despite how depressing it was to face the reality that I’ve actually reached this stage in my disease.

But a few weeks before our departure date, that pride turned to anxiety. Did I really want to be dependent on my husband pushing me around the resort in a wheelchair the whole time? How would that affect me emotionally? I started to fantasize about finding some sort of sporty stand-up travel scooter, like the one I have at home. When I’m zipping around on my scooter at 15 mph, picking up the boys from school, I actually feel kind of cool. Adults stop to ask me from where I got it. Kids point and exclaim how “awesome” it is. Most importantly for me, I can interact at eye level with everyone else.

My on-line search for a portable, collapsible, stand-up travel scooter turned up nothing. Sure there were plenty of more traditional sit-down electric mobility scooters available, but I wasn’t willing to consider them. I rationalized that I’d be fine with the hotel wheelchair. Of course, there’s a difference between rationalizing and being truly rational. And I wanted to be rational. Then I remembered that a while ago, a dear friend of mine saw a woman riding on what essentially looked like an adult electric tricycle. She stopped her on the street, asked her the name of the scooter, and then texted me a picture of it right away. (True friendship love.) It was called the Travel Scoot.

Ten days before we were set to leave, I mustered up the courage to look into the Travel Scoot. Sure, it was portable and lightweight and had a very cool (relatively speaking) design, but it didn’t meet my criteria of being able to stand up (i.e. feel “less disabled”). Plus, it cost far more than I was willing to spend on something I technically didn’t need. It is hard for me to accept or tolerate more help in my life – whether from a mobility device or other people – until I feel like I really need it. Even if it would make my life easier or more comfortable. But then I think about a moment I had a bar-mitzvah a few months ago, talking to the grandmother of the bar-mitzvah boy. When we got up to take our seats at the table, me with my cane, she said wished she had brought hers too. When I asked her why she didn’t, she replied, “I’m too vain.” It struck me as somewhat fascinating that even someone twice my age, with presumably all that extra life experience, was letting her feelings of discomfort or embarrassment or vulnerability interfere with making a rational logical decision to be safe and more comfortable. I didn’t want to be her.

So, I went from being unwilling to even consider purchasing this scooter to ordering it within 2 days. And in those 2 days, I broke down and sobbed 3 different times. Once on the phone with my best friend in the bathroom at work while she was at her work waiting to take a deposition, once at home with my loving husband, and once by myself. All the usual thoughts flooded in behind the tears: “I wasn’t supposed to ever get here. I can’t believe this is really happening to me. I don’t know how to find the strength to keep adjusting and adapting. I’m not sure how much more of this I can take.”


My scooter arrived 3 days before we left. My husband, my most rational cheerleader of all, thought it was an awesome design from a physics and aesthetics standpoint and was excited to try it out. My kids thought it was cool and had fun scooting down the hall. And I just sort of resigned myself to full acceptance.

I wish I could tell you that making the decision to buy the scooter was the hardest part. But of course, the hardest part was then actually being on vacation with it. Now, it wasn’t nearly as miserable or impossible as it would have been without it. I know that. But I hated being a spectacle everywhere I went. Especially when I tipped over and got a huge bloody gash on my knee. I hated getting stuck in the mud and having to ask a stranger to give me a push. And then unrelated to the scooter itself, there was the realization that I can no longer walk on the sand without the help of my husband. I literally can’t take a step in any direction on my own without falling down. And even with his help, it’s a whole production getting to and from the ocean. And in front of an audience of hotel guests on the beach. The level of helplessness I feel when stranded (after all, he does have our two boys to tend to as well) and the degree of dependence I now live with at baseline is something to which I imagine will take me a very long time to adapt. I couldn’t even navigate the buffet on my own because with my one good hand holding onto my cane, I don’t have another strong hand to hold my plate of food. Even the resistance of the metal serving tongs were too much for my “good” hand to be able to properly serve myself food. (A sweet teenage girl saw me struggling and helped serve my veggies one night.) All these emotional hits make me never want to go anywhere out of my comfort zone.

I want to acknowledge that it’s not lost on me that I’m sharing about navigating a beautiful beach resort and struggling at a bountiful buffet. Especially in the context of the current global suffering of humanity, I get that I am beyond privileged and blessed to have these opportunities. Even to be able to afford a mobility scooter. (I was shocked to learn that across the board, insurance will only cover one if you can’t physically get to the bathroom in your home unassisted.) But just as I compassionately remind my patients who judge their struggles as “first world problems” or defend against their pain by arguing, “but things could be so much worse,” I remind myself that it’s never either/or. I can make room for the feelings of pain and sadness alongside the feelings of gratitude. I can feel so lucky to have access to this scooter and these resources and feel so terribly unlucky that it has to be a part of my reality.
I refuse to let HIBM restrict and narrow my life. It is like a thick rubber band constantly tightening around me and threatening to diminish my quality of life. Because I don’t have the physical might to stretch it out, I can only use sheer will. If I let my emotional (or physical) discomfort dictate how I live my life, I will never expand it.

On this trip, expansion for me meant meeting two lovely families, one of whom goes to our school back home and with whom we plan to maintain a friendship. It meant daily swims far out in the ocean where I could feel liberated and at peace. It meant watching my boys cultivate their independence, running around the resort by themselves, meeting people from around the world. It meant being able to go to and from my room without needing anyone to accompany me. And finally, my personal favorite, it meant trying my hand at trapeze. Yep, did that. Despite the long and treacherous (and quite inelegant) climb up the ladder, more people than I cared to notice staring up at me, and barely being able to hold onto the bar, the moment of expansion I experienced while swinging for those few seconds was exhilarating. I guess sometimes you have to climb the tallest ladder for a few seconds of joy. It’s painful and crazy and, ultimately, worth it.



And here I am in full expansion mode: club-med-trapezing



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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