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

Friday, March 21, 2014

To my fellow HIBMers who know these feelings all too well…

That feeling you get when…

…you physically can’t move out of the way (as in, just side step) when someone’s trying to get by and he or she thinks you’re just being rude.
…there’s an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run to your kids when they may need you most).
…someone who’s ahead of you (and maybe in a rush) is being kind by holding the door open for you and you feel terrible because they don’t realize how long they will have to wait until you hobble your way over to them.
…you meet someone for the first time, e.g. in your new book club and you don’t know how, when or even if you should or need to reveal this “secret” or plain simple fact about yourself and your disability.
…you meet someone new, whether it’s sitting in a parents’ meeting at school or swimming in the pool at the gym and eventually you know you’ll have to get up and out and display your disabled body and awkward gait for everyone to see and you are once again reminded that you will never have the luxury of just being you rather than you with the disability.
… you’re at the supermarket check-out  and you realize you forgot to get something, but the line behind you is so long that you just accept defeat and plan to get it the next time. 
Then there’s the feeling you get when…
…you hire a ski instructor (who’s not part of the adaptive ski program because they happen to be shut down for the few days that you’re there) and you tell him you feel bad that he has to constantly take his skis and gloves on and off and then bend down to attach and detach the special hardware on your skis every time you get on and off the lift and his response is, “Are you kidding me? This is nothing compared to what you have to deal with on a daily basis.”
…you’ve spent the last 7 years dreading the day when one of your sons would eventually have to help you physically in some way and it turns out it’s actually not a burden for him but rather something he does naturally and with such pride.
…your receive weekly deliveries of fresh pomegranates seeds from your father and step-mother which they’ve spent hours processing for you because they want to ensure you’re eating enough antioxidants.
…your mother and mother-in-law drop everything when you say your husband’s on an urgent care shift and you need help with the kids.
…your husband surprises you and takes it upon himself to have railings installed on the sides of the two steps in front of your house that have been giving you trouble for a while, because you couldn’t bring yourself to deal with it in any productive way.
…you discover a cute new pair of retro sneakers to add to your collection of lace-up shoes only and you get a boost.
…your preschool mom friends regularly check in with you at an indoor gym birthday party to see if they can help you out in any way.
…you travel through your life and realize that your highs are incredibly, unimaginably high and the lows are tragically, painfully low, and you conclude that you’d rather struggle to hold onto and  experience  all of it than settle for the alternative.

Saturday, March 1, 2014

I’ll Go On

Today is international Rare Disease Day. And on this rare, very rainy Friday in Los Angeles, what was most on my mind all day was the fact that before HIBM, I don’t think I ever once thought to consider the impact the weather can have on the lives of people with disabilities. I don’t judge myself for it. It’s just one of those things that would likely never enter into one’s mind unless or until one is confronted by it first-hand. I am lucky to live in Los Angeles, where the elements almost never work against me. And so it is probably because of the infrequency of such weather that it hits me as hard as it does and did today.

As I woke up to the sound of pounding rain on the roof, one of my first thoughts was what shoes I would wear as I trekked around town, getting everything done that I needed to today.  I wondered if I would be more excited for the rain if it meant I got to pull out a pair of stylish, barely used rain boots from my closet. Or, any rain boots for that matter. (I have yet to find a pair of rain boots with a zipper down the back that would allow for me to insert my leg braces). When I arrived at my first destination and opened the car door, I took out my new umbrella in one hand while still sitting in the driver’s seat (and while also holding my phone, talking to my sister in the other). I was running  late for an appointment.The rain was coming down hard. In my old life, I would just press the little button on the handle to allow for the umbrella to open and be ready for use. But in my current life, my right thumb doesn’t have the strength to push it down all the way and so as I’m getting soaked in the rain with my car door open, I had to abruptly hang up the phone, put everything else down and then use both thumbs to open it. This may sound like a minor inconvenience to some, but in that moment I am made acutely aware that even the simplest of physical tasks are challenging for me. I am frustrated, angry and sad that I have to tolerate this disruption, both on a practical and an emotional level.

Of course, then there’s the business of not being able to jump over puddles or step up onto a curb easily to avoid the small river that forms between the street and the side walk…

But I will stop there.  This is just a few minutes of the life of someone with a disability. And that’s someone who is still relatively able-bodied.  And who has so much farther to go. I am still at the beginning. This is nothing relative to what may be coming. There are HIBM patients using canes, walkers and wheelchairs, trying to navigate their way through slippery sidewalks or worse, being forced to stay home and not get to participate in their lives the way they wish they could. There are patients waiting out in the rain for public transportation because they no longer have strength in the muscles needed to drive a car themselves. The ones who have become even too weak use hand controls so as to preserve some independence.

So, where does that leave us? Where does that leave me?

I recently read an article in the New York times titled, “How Long Have I Got Left?” written by Paul Kalanithi, MD, one of the chief neurosurgical residents at Stanford. He shares his experience of being  recently diagnosed with metastatic lung cancer. He describes what it’s like to have to cope with confronting his own, very real mortality on a daily basis at age 36. In doing so, he refers to 7 words written by the playwright Samuel Beckett that have stayed with him since he had read them years ago as an undergrad: “I can’t go on. I’ll go on.”

And much in the way that Paul Kalanithi was profoundly impacted by this simple phrase, I too have been holding it close to me. It has been incorporated into my armamentarium of coping tools. In fact, it’s at the top of the list. Somehow, some way, we do it. We move forward. We endure the loss.  We find the blessings and joy in our every day lives to balance the depth of the pain.  We think we won’t be able to handle the decades that are presumably ahead of us, but somehow the years pass and we’re still doing it. Those of us with rare diseases don’t have the luxury of knowing that there are billion-dollar pharmaceutical companies lining up to cure us the way people with lifestyle diseases, such as high cholesterol and hypertension do. We don’t have the benefit of research institutes across the nation focused on curing our disease the way other devastating but at least much more common diseases do. We have to pull from all of the resources that we have within us. We have to cultivate our resilience in a way we never imagined we’d have to. We have to raise awareness. And we can never give up on believing that now matter how ultra-rare our disease is,  there will always be hope. No disease can take that away from us.

I can’t go on. I go on.

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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