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

Friday, July 14, 2017

Permeable Membranes

I have been a feeler of feelings for as long as I can remember. When I was young, I used to write long, sentimental birthday and Mother’s and Father’s Day cards.  My sister used to tease me (still does), about my overly expressive, touchy-feely “treatises.” On Thanksgiving, I was always the one (still am) to make people go around and share what they were thankful for in the past year. Or on Shabbat, what they were grateful for in the past week. I have about 15 diaries from my youth, sitting in my garage, all filled with pages and pages of feelings.

I never realized what a tricky business feeling feelings was until I got a bit older. Though I was never one to cry at the drop of a hat or while watching a sappy commercial, I definitely learned early on that I was quite sensitive, more so than others. Whereas some people would feel sad at the end of a movie, I would be crying in the theater long after the credits rolled.

I started to become envious of people who had thicker skins. People whose membranes weren’t so permeable. When I went off to college, I struggled. I couldn’t find “my people.” I felt lonely and lost and overwhelmed academically. I called home countless times, crying.  I felt weak. I longed to be more resilient in the face of life stressors. What felt like a blessing at a younger age, started to feel like a curse in early adulthood.

Fast forward 10 years and at age 31, I was diagnosed with HIBM. Of course, in an instant, every life stressor I had ever experienced shifted way down on my newly recalibrated scale. I had no defense against the sadness, fear and emotional trauma. I cried and cried and cried. I felt the enormity of it in a way that people around me didn’t seem to. I couldn’t “look on the bright side” nor see anything positive in it.  I kept telling my husband that I wasn’t cut out for this sort of thing. That I wasn’t wired this way. That I wasn’t equipped with the proper tools to cope with something of this magnitude. I worried that the weight of it would crush me.

Five years into my diagnosis, I mustered up the courage to write my first blog post. I started publicly sharing my scariest, most painful and darkest moments. The really depressing ones. The really uncomfortable ones. The really emotionally intense ones. Just as I’m not so good at defending against what feelings come in, I’m also not so good at defending against what comes out. That’s not to say that it’s easy for me to open myself up. After publishing many a blog post, I have immediately regretted it. Did I share too much? Go too far? Turn people off? Bring people down?  I try to hold that discomfort just long enough to remind myself that the alternative discomfort-the one that comes with keeping all the pain locked up inside, the one that feels so overwhelmingly lonely- that one is far worse. And more destructive.

People often fear being “pitied” if they were to let others in on their struggles.  I’ve never quite understood that fear. If the basic definition of pity is “the feeling of sorrow and compassion caused by the suffering and misfortunes of others,” then why is it such a bad thing? I actually rely on other people’s compassion, both on a practical and an emotional level. Maybe I wouldn’t need to so much if I didn’t have this disease. But we are all vulnerable and in need of compassion, disease or no disease. If you are afraid of being “pitied,” then perhaps you’re afraid of people holding up a mirror to your pain and seeing what they see. Only when you can get comfortable with your own suffering,  can you accept other people’s compassion for it. And as a result, life can feel a lot less scary and a lot less lonely. At least, that’s been my experience.

For a long time, I was surprised and even confused by people’s comments on the blog. Words like “strong” and “inspirational” and “brave” were being used describe me. Me, strong? Just for feeling my feelings?  It was so contrary to the perception of myself I had carried around for so long.

Then one day, I understood the true definition of strength. Strength is not about being able to “see the positive” or “look on the bright side” or push past the pain or bury it deep and move on. Strength is having a non-distorted perception of how bad things really are and accepting it; locking eyes with the beast of loss and pain directly without turning away. Strength is being able to let in the heaviness of the sadness, fully and wholly, and still, keep moving.

Sometimes I wish I didn’t feel my feelings so deeply.  I wonder if my life would feel easier. But then I wonder, if I didn’t make room to feel the depths of my pain, how then could I make room to experience the height of my joy? If I didn’t grieve for what I don’t have, how could I hold the extreme gratitude for what I do have? If I can’t have compassion for myself and make room for all the feelings, then how can I make room for anyone else’s?

And finally, if I can’t let loss all the way in, how then can I possibly let love all the way in? True, pure, unbridled love?  What good is a life without love, really?

A few weeks ago, I woke up in the morning of my birthday to this card written by my husband. I can’t quite come up with the words to adequately describe the experience of what it felt like to read it. But as I let all the feelings come rushing in, one thing was for certain: I’m not planning to stop feeling my feelings anytime soon.

Friday, July 7, 2017

Muted Screams of Summer

Summer used to be one of my favorite seasons. Not just because it is kicked off by my summer solstice birthday, but because there has (historically) always been a carefreeness built into my summers- wearing sundresses and flip-flops, frolicking around at the pool or beach, traveling on summer vacations (my personal favorite). Throw in hours of sunshine and long lazy summer nights and there’s not much to not love.

Except when you live with HIBM. Because just as with pretty much everything else in life, HIBM has found a way to contaminate my love for summer.  All of the things I used to love about summer have now become triggers for me. The sources of those fun, easy, carefree feelings have been transformed into triggers for my own sadness, anxiety, fear, and anger.

This summer we have been lucky enough to spend a few weekends away. For the first one, my husband and I went to Palm Springs for our anniversary, motivated by my desire to make it out to the famed integratron. I brought my sit down electric scooter because by now, there’s really no other way to travel without it, a fact I’ve mostly come to accept. Upon hotel check-in, we were delighted to hear they had upgraded us to a private room with a private balcony, so as to avoid being right off the noisy, boisterous family pool. (When we travel without our kids, we want to be without all kids.) I felt excited and relieved. But because I am still not used to traveling with my increasingly disabled body, I didn’t ask until she was about to give us our keys if it was on the second floor. She excitedly said yes! Then I asked if there was an elevator. She said no. And that’s when I had to start investing the all too familiar emotional energy in evaluating the pros and cons of whether or not I could handle it. I really wanted that private room. I really wanted this to be a weekend truly away for us. I decided I could do it if there were railings. (Yes, my husband would have to schlep the scooter up and down the stairs, but it would be worth it.)  So I asked her. She went to inquire and came back with a no. That settled that. I told myself it wasn’t a big deal. I reminded myself how lucky I was to be in a nice hotel, blah blah blah. It was annoying, but I knew we’d get over it. And anyway, the main event was the following day.

The next day, we drove through the Mojave Desert to get to the Integratron. I was so excited. As my disease continues to limit me physically, I find myself seeking out more and more novel experiences, especially in the spiritual realm. This was one of them. I felt giddy when we arrived, staring out onto the giant geometric dome. But as we got closer, I saw that access to the dome was actually on the second floor.  And not via a staircase with a railing, but rather a steeply-angled ladder. Damn it. The anguish set in- a combination of foolishness for not having researched the accessibility of it and anger that I couldn’t seem to have just one non-HIBM adulterated experience. I was determined to make it up there. One of the owners took me over to the entrance ahead of the rest of the group to give me an opportunity to try to climb the ladder. She was gentle and patient. I finally made it up. And it was worth it. But I was acutely aware that given my current rate of progression, had I waited any longer to check it out, I wouldn’t have been able to make it up into that experience. I held the gratitude for having been able to do it when I did, alongside the pain of knowing I probably wouldn’t  be able to do it again.  The constant process of having to hold both is emotionally exhausting, on top of an already physically exhausting reality.

This past July 4th weekend, we took the boys to Legoland for three days. It’s their happy place. Rather than renting an electric scooter like I did last summer, I brought my own, which at least alleviated some of the bitterness of having to spend an extra 50 bucks a day. But there’s a different kind of bitterness (and underneath that, sadness and frankly sheer terror) that sets in when going to the same place exactly one year later when living with a progressively debilitating disease. It strips me of any shred of denial that I am, in fact, getting weaker. It is a nasty reminder that no matter how many supplements I take, no matter how healthfully I eat, no matter how much physical therapy I do, I am getting worse. I feel powerless against it. I am trapped in this disease and traveling through it in one direction. The destination, which once seemed so far away I that could barely see it, is slowly coming clearer into view.

Last year I got to enjoy the wave pool (among others activities) with my boys. I got to bob up-and-down with them and join in on their gleeful anticipation of the next wave. This year, I sat on my scooter in the scorching sun and watched them from a distance. The effort that would’ve been required of me to join in felt too much. I did my best to experience joy through theirs, though they were so far out, I could barely see them and my husband.  This year, I took my older son who’s obsessed with roller coasters up to the front of the line using my disability pass, and then watched him climb into a car by himself while I stayed back. If you’re someone who doesn’t enjoy roller coasters, maybe that sounds ideal to you. But for me, roller coasters were always one of my favorite thrills. I no longer have the neck strength to hold my head up safely on those jerky turns. I smiled at his squeals coming down, but inside I yearned for nothing more than to share the experience alongside him.

One of the highlights of our hotel was the waterslide. As you might imagine, I love water slides. On the second day, I couldn’t stand it anymore, so I decided to go for it. My boys were thrilled. (A wonderful feeling and yet a painful reminder that my inability to participate physically in my boys’ lives likely takes more of a toll on them than I care to recognize.) I slowly and arduously climbed up each step to the top. I did it.  But the thrill of coming down was tainted by the fact that my head slammed into the slide from the G-force. I decided to sit the rest out. I looked around the pool and tried to convince myself that I could be happy doing what so many other moms were doing: sitting on a lounge chair,  reading a book, sipping a drink, maybe not even knowing where my kids were. But that’s not who I am. What may seem like a luxurious choice to someone else is for me an upsetting reminder that I no longer get to do what I want to do, when I want to do it.

I am sick and tired of not having choices. I’m sick and tired of being forced to suppress the most basic, fundamental nature of who I am. I’m tired of being trapped in this body.  Have you ever had that horrible stress dream where you’re being threatened by something or someone and you try to scream, but your voice is muted? That’s how it feels,  as if my body’s scream is muted.

My spirit, my energy level, my excitability, my desire for adventure and play and spontaneity, even down to the sneakers I have to wear- none of these align easily with the body I have become forced to live inside. I can barely remember what it felt like to not have my body be in conflict with who I am. I want to believe that it must have felt so carefree, but in actuality, it probably wasn’t something I was ever even conscious of.  How liberating it must feel, to not be constantly emotionally triggered by the awareness of what you used to be able to do, what you currently aren’t able to do, and what you know you will likely never be to do.

I look at Facebook photos of people’s summer vacations- mothers taking sons on solo trips abroad, families hiking to the tops of mountains in national parks, couples indulging in exotic trips to hot springs in Iceland or exploring narrow, cobblestone alleys of small towns in Italy.  All things I always thought I would do with my own family, all things I  wish I could do, but can’t.

Don’t get me wrong, I’m not saying people with disabilities can’t travel, of course. I’m saying there are endless restrictions on where we can go and what we get to experience. And between the logistics involved (figuring out what’s accessible and what’s not), the physical effort required, and the subsequent emotional sequelae, it takes a lot of the fun out of it. At least for me.

I miss easygoing weekends away. I miss my pre-disease summers. Though I am grateful for having had 30 years of them, I wish I could have more. I’d even settle for just one day.

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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