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

Friday, November 27, 2015

Thank you

I was going to post yesterday, but I chickened out. I was going post about how, for someone who feels in touch with gratitude on a regular basis,  it was disappointing to not feel it to the degree I normally do on Thanksgiving.  Thanksgiving is like my gratitude Superbowl. It’s when we are all so in touch with all the ways in which we are blessed.  But I haven’t been feeling as grateful in this past month.  It sounds so taboo. I guess it’s not that I haven’t been feeling grateful,  it’s just that it’s been harder counteract all that I’m not  grateful for. And yesterday,  I didn’t want to be a buzzkill. Or even offend anyone. So today,  I wanted to share. I wanted to tell you about some experiences that have felt hard in this last month. And where I have ultimately found the gratitude.

In October, my husband and I got away to Portland for the weekend. It was so great, except for the sad realization, once and for all, that I can’t really explore a new city on foot the way I used to, the way I wish I could.  Even stepping up onto a curb has proven to be a challenge. While we were there, on that Saturday night, we waited in the hour-long line in the drizzling rain at a famous ice cream shop. We were having so much fun, except for when I walked out of line to go to the bathroom, slipped and fell, had a crowd gather around me, heard a bystander so sympathetically say, “oh no, she has a cane” and somehow ended up getting helped up by a police officer.

A couple of weeks ago, I attended an annual psychopharmacology conference at the Skirball. It’s always a wonderful opportunity to see old friends from residency, but this time, it was also an unwelcome opportunity to see how much I’ve progressed since the last time I was there. I can handle the more “minor” challenges like difficulty clipping my name tag onto my lapel or trying to keep up with everyone while heading to the luncheon area. But sitting down for lunch and watching everyone at my table so effortlessly cut into their food, while I sat their acutely aware of how awkwardly I now hold my utensils and struggle to cut my own food, did not feel like something I could handle. It took all of me to not flash forward to a time where I might have to sit down to a meal and ask the person next to me if he or she wouldn’t mind cutting my chicken for me.



If you’re still here, if you’re still reading, if you are still with me, I am grateful for you.
I have tried to hold these experiences quietly within myself. But I can’t. I can’t hold them alone. They are too heavy. They will crush me.

Thank you for holding them with me. Thank you for not running away out of discomfort or fear. Thank you for receiving my invitation and for choosing to attend.

I am grateful for you and I am grateful for the one thing this disease has forced upon me- the strength to share and be vulnerable. Because if I didn’t have it, if I couldn’t do what I’m doing right now, I would be so lonely. And the loneliness of carrying this by myself would disable me in a way that, unlike all the rest, I wouldn’t be able to adapt to.

Sunday, November 1, 2015

Kitchen dreams (and nightmares)

As I sat down to write this post, I realized how often the topic of my home has come up on the blog. Or at least, that’s how it feels. Probably because I’m so intimately acquainted with it on a such a micro-physical level. It plays an integral role in my daily life and overall feeling of well-being, as I’m sure many homes do for many people, but in different ways and for different reasons.

We recently embarked on a kitchen remodel. We wanted a new kitchen not only because we love cooking and being in the kitchen (especially with Noah’s recent into foray baking bread), but because as I slowly get worse, I am becoming increasingly impatient with my limitations. I am continuing to have to increase my tolerance for frustration and, quite frankly, I’m over it. I love cooking, I love coming home from work and making dinner for my family, but as the only adult home during that time, I can’t function as efficiently as I used to.  As my calf muscles melt away, it’s becoming harder to stand on my tippy toes to reach the dishes on the second shelf of the cabinet. Or as balance becomes trickier, it’s getting harder for me to walk over to the trashcan holding food waste and then press the pedal that lifts open the lid. And it’s been a while since I’ve been able to fill up a big pot with water and lift it up onto the stove by myself.

I initially justified the expense to myself by saying I needed my kitchen to be accessible and adaptive to my needs. Naturally, right? Makes perfect sense. Then once we decided to move ahead, I quickly forgot that part.  I had told myself that my job in this process would be to be mindful not only of my physical needs now, but also to try to anticipate my future needs with this disease. But who wants to do that?  That’s no fun. The fun part is going to appliance warehouses to pick out cooktops or staying up late to tag photos on design sites. It is the two of us embarking on this journey together, for the first time ever. Creating something together. Making something completely our own. Customizing our physical space. I now fully appreciate why people who have the funds often go that route, building an entire home. It’s such a luxury- building your vision, watching your dreams transform into reality.

In the first couple of weeks, when questions came up from the contractor about what would work for me physically, I told myself in a very quiet but very strong voice, “Oh come on, you don’t really need to worry about that. You won’t really need to check the counter height to see if it would be suitable for a wheelchair, because you’re never going to get there.” I tried to believe it.  Was that my defense mechanism kicking in and trying to prevent me from confronting the truth? Buying me some time? Or was it a rational voice that genuinely believes that the scientific community will figure something out before I get to that point? Of course, there is no one, not one person on this planet, who can answer that question. It’s a scary place to be. I would think it feels lonely, but it’s surprisingly, reassuringly not. Because I am not alone. I have people next to me who hold it with me, no matter how heavy. And wherever I go, they follow along right beside me, still carrying it. Of course, they didn’t just appear alongside me, ready to work. I had to invite them to come along. I had to let them in. I had to expose my vulnerabilities. [See previous blog post on the benefits of vulnerability and love being everything,]

Although I have people to share the load with me, that doesn’t mean I am always willing to hand it over. Sometimes, just sometimes, I want to let the people around me relax. Take a break and just take the load off. Sometimes I just don’t want it to be about my disease. Not because they need that, but because I need that. Sometimes I just want to pretend. Try on what it would feel like to not have this disease. I don’t want to have to mention to my husband in an attempted nonchalant way that we may indeed have to choose our flooring based on whether or not it will leave an uneven surface between the dining room and kitchen which will potentially make it difficult for me to walk with my future gait.

I want to be able to choose things because I like them, not because my disease and my progressively weakened body requires me to need to have them.

And yet, that simply isn’t an option for me.

So I will feel sad about it for a little while. I will feel that vague bummed out feeling.  That feeling you aren’t always conscious of  until you’re reminded of it and realize, “Oh yeah, that is what’s been feeling hard lately. ”

And then I will presumably get back to my happy, grateful, I’m-so-lucky-I-even-have-the-opportunity-to-do-this-kitchen-remodel baseline.

Yes, I know I can do it. But that doesn’t feel as satisfying as it used to,  just knowing I can do it. Sure, I know I will move through this. I just wish I didn’t have to.

And yet.

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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