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

Friday, February 24, 2017

Even in basketball gym parking lots

This year, my 6 year old son decided he wanted to play basketball on a team. He is no doubt the sportiest among us. We signed him up willingly, but secretly dreaded getting up and out for games on a Saturday at 9AM. We haven’t been a part of the whole group sports subculture until now and we weren’t sure it was for us. But turns out, the whole experience has been so much fun. Sure, it’s been tricky for me physically- trying not to get knocked over when the doors open to the gym and people come rushing in and out, or trying to hobble my way quickly enough across the court to get a seat before balls go flying – but those discomforts have been in the service of something so comforting. As silly as it may sound, going to and from basketball practices and games every week has been quite normalizing for me. As in, it’s given me an opportunity to feel like everybody else. It’s what so many moms and dads do. I get to feel typical, regular, just like them. All of the feelings that HIBM has taken from me over the years.

I’ve been savoring the normalcy. Until last Wednesday. I was walking back to my car with one of my new favorite mom friends and our kids after practice. We were discussing where we were taking the kids to dinner (another simple parenting act that, though increasingly challenging, I’m so grateful to still be able to do). And all of a sudden, just like that, I didn’t fully clear my foot on the ground and I tripped and fell. Hard. I’m used to the bruised knees and scratched elbows that come with my falls. But this time, I tried to put my hands out in front of me to no avail. The next thing I knew, my forehead knocked right onto the concrete curb. I didn’t lose consciousness, but the pain was intense. Any time I fall in front of my children, my first instinct is to try to keep it together. I don’t want to scare them. I don’t want them to worry. This time, there actually weren’t even tears to suppress. Maybe because I was so stunned. Maybe because I was with a relatively new friend who hadn’t yet experienced the extent of my disability and I was afraid to be too vulnerable. Would I scare her off? Would it be too awkward? Would I put her in the uncomfortable position of feeling like she had to know what to say? She right away bent down to help me up and calmly asked me what I needed and how she could help. I said I was fine, as I always say right after I fall in public. I casually explained that falling is just a part of my life. I gathered myself together and we kept walking.

Then we noticed my elbow was bleeding. She insisted that I pull around to her car so she could tend to my small wound with her first aid kit. She also said she would take all the kids to dinner in her car. I told her she was being silly, but she wouldn’t take no. I pulled around and put down my window and as she was putting neosporin and a bandaid on me, she suggested in the kindest, most compassionate way that maybe I shouldn’t put my head down when I fall. I realized that she wasn’t aware that doing so wasn’t intentional. I then explained that my neck is so weak that I no longer have much control over it under the force of gravity. And then, of course, I started crying. She told me not to be upset, she reminded me that I have an amazing husband and two beautiful children, that I am alive and healthy. She said it with such love. I felt it. And then I cried even more. She then said she would take all four kids to dinner and that I was not allowed to join. She insisted that I take some time to be with my husband. I protested for a bit, and then I allowed myself to receive her compassion.

I drove away and cried and screamed and cried some more, all the way home. My right brow bone was throbbing and I could feel the swelling. I cried because of the pain. I cried because of the fear of what’s to come. I cried because I didn’t get to pretend any more that I was like everybody else. And I cried because of the kindness.

I came home that night to my husband holding an ice pack at the door. I sat down at the dining room table and iced my eye for an hour, terrified of having a scary looking bruise above my right eyebrow at work the next day. I wish I could have explained to my husband that I fell because I wasn’t using my cane or because I wasn’t watching where I was going. But I no longer have the luxury of those options. The scary truth is that there’s nothing I could have done differently. This is just where my body is right now. I didn’t fall trying to climb stairs or do something heroic. I was just trying to do the (no longer) simple task of putting one foot in front of the other.

Once I finally stopped crying, the humor came. I joked with my husband about how grateful I was that I didn’t rip the knees of my beloved jeans that I got on crazy sale last year. I joked that maybe I should just walk around in a helmet from now on, pretending not to notice if people stared. We laughed that I should have a consultation with a plastic surgeon and draw up plans for my dream nose so that if I fall and break my nose, I’ll be ready to go. (But then he ruined the fantasy by saying, knowing my luck, I’d get a nose job and then trip and fall on it and waste all that money.)

After the tears and after the jokes came the hardest part- taking a serious look at what it means to have a fall like that and how best to move forward. Where is that line? How far do we patients push the boundary of what’s safe before we accept that we can’t keep doing what we’ve been doing in the same way? Is it when I get a concussion? A laceration on my forehead requiring stitches? If you’re a very logical, practical person, perhaps you’d say the time is right now. Why be foolish, right? And if I were you and I were reading this, I’d probably agree. But if you were me, you’d know how impossible it feels to yet again confront the reality that HIBM is, as advertised, a progressively debilitating disease. What will be next? Will I start using two canes? Will I go straight into a walker? And what about a wheelchair? For how much longer can I get by doing the things I enjoy in the way I enjoy doing them? For how much longer will the benefit outweigh the cost? And just how scary is that cost?

We are living in dark times. The ugliest underbelly of humanity is being exposed. The most vulnerable among us, including people with disabilities, feel threatened and live with increased fear for our futures. And though we can make our voices heard through marching and social media, etc., there is an extremely uncomfortable feeling of powerlessless that makes it harder to hold onto hope. I’ve looked for light in kindness and compassion. It’s one thing we can each control about ourselves. It is so powerful. We can be vulnerable, and we can allow ourselves to receive love. We can actively fight against divisiveness by being intentional about forming deeper human connections. Even in basketball gym parking lots. I don’t like tolerating more help in my life, but at the same time, I increasingly depend upon exactly the kind of compassion I want to put out in the world. We need to hold each other up with it.

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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