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

Sunday, June 16, 2013

Dedicated to the one I love…

Recently my sister told me that someone who saw me speak at the last fundraiser thought I was “amazing.” She then told me that this person said my husband was even more amazing. I wondered how he knew that without even knowing or talking to my husband, because of course, it is true. And I thought about it for a while. And in honor of our 10 year wedding anniversary yesterday and Father’s Day tomorrow, I wanted to dedicate this blog post to Noah- my amazing husband and tireless father of our two boys.

When I fell in love with Noah, I felt like I had been catapulted into an altered state. As a psychiatrist, I can’t really say it was a true mania, but it came close. I was euphoric and giddy and barely slept or ate for a week. I had found my true love. I felt a peace within me I had never known. I wrote in my journal that no matter how hard life was going to get, I knew it was going to be okay as long as he was by my side. I wasn’t afraid anymore of anything. And then three years later, life got hard.

Noah was with me the day the neurologist told me I had a progressively debilitating disease for which there was no treatment or cure. He stood there next to me, holding me tightly in his arms as my world, our world, came crashing down. I told him he didn’t deserve this, that he didn’t sign up for this- all those things partners tell their loved ones when they know their own personal tragedy has become their shared tragedy. And he simply told me that this is what happens in life and it could be so much worse. He sensed that some family members were secretly worried that maybe he wouldn’t stick around (because sadly and embarrassingly it’s not unheard of in my Persian Jewish culture to run from pain) and he was insulted and offended. He listened to me cry and scream for countless hours, especially in the beginning, and never once tried to make me look on the bright side if I didn’t feel like doing so. He held my sorrow so tenderly, for as long as I needed, without trying to hurry me along through it.

And that was just at the beginning. For the past 7 years, Noah has taken on more than he could have ever imagined and not complained once. I mean, not once. He is the one who has to wrangle the boys to get them in the car or chase the little one to get him to put his shoes on or carry all the gear and a kid across the sand when we go to the beach. He is the one who carries them when they’re tired, transfers them asleep from the car and scoops them up off the floor when they cry. He is the one to climb up the stairs to go down the water slide with them for the umpteenth time and then come over and assist me getting out of the pool.  He is the one who puts out his arm for me to hold onto every time we walk anywhere.  No  matter how exhausting it may be, he does it, over and over again. But I know it’s not just about the physical stuff.

When I sulk about not feeling attractive wearing my braces and sneakers with a dress, he tells me he hated it whenever I wore any kind of heels anyway. When I share my frustration of not being able to be more helpful with the kids or be more outdoorsy with him, he tells me that he could care less about what I can do physically,  just as long as I’m around for forever with him and can continue to be his wife and the mother to our children.  When I told him I desperately wanted another child and it was going to cost tens of thousands of dollars from our savings and not be very simple, he supported me without resistance, even despite the fact that he did not feel the same calling to have a second child since he grew up a perfectly happy only child. When we get into bed at night exhausted and I realize I forgot to take my ManNAc capsules, he is the one who tells me to stay put and then goes into the kitchen to get me a glass of water and my pills. And when one of the boys gets up in the middle of the night and calls out for us, he is the one who gets out of bed to tend to him, no matter how many nights in a row he’s done it.

Maybe you think that this is just how any decent human being would act. But I will tell you that Noah is unlike any human being I have ever known. He is the reason I can live in this world in the way that I do. He is the reason I can still feel sexy and confident leaving the house with black carbon fiber rods covering the backs of my lower legs. He is the reason I can stand up in front of hundreds of people and feel safe sharing my story.  He is the one who reminds me that he didn’t fall in love with me because I could jog and lift grocery bags. He and the family we have created together are the reason I continue to feel that I would not want anyone else’s life but mine. Disease and all. Because when you share a true love with someone else, everything else is secondary. And though saying this isn’t what gets people to donate at fundraisers, underneath it all, with Noah by my side, I do feel like everything will somehow be okay. Because so far, he’s managed to make me feel like it is.

Friday, June 7, 2013

Last night’s fundraiser…

Last night I spoke to about 200 people at a Hadassah fundraising event. All of the money was going directly to fund HIBM research in Israel. 

Any time I am asked to speak about my experiences living with this disease, I have an immediate mixed reaction. On the one hand, I could and would never say no, because if I can contribute on any scale towards raising awareness and raising money towards a treatment or cure, then of course, I will do it. On the other hand, in that moment when I say yes, I know that it means in the weeks leading up to it, my mind will be focused on the disease in a way that will make it hard to think about other things, the regular stuff of life. I start to see my life through my HIBM lens and I don’t have the option of looking away, because I know I need to speak authentically about my experiences. I sometimes think it won’t take much out of me, because I figure I can just cut and paste from my blog and past talks. But of course, that never seems to be the case. Instead, I am up late at night, at times feeling bitter and angry that I can’t just lie on the couch and watch TV with my husband after a long work day because I’m on the computer, digging deep into feelings about this life, which I sometimes still can’t believe I’m living. I invest a lot of emotional energy in trying to figure out the best way to convey what it is like so that people can truly understand what we are all up against.

And then the night arrives. This time around, I was barely nervous. Surprising as that may sound, I chalk it up to simply having done this a few times and the slight desensitization that comes with repeated exposure to a stressful stimuli. One difference that made me feel a bit more vulnerable this time around was that I wore a short dress with a pair of sandals and my braces. I have spent years looking for non-sneaker shoes and it felt like a major triumph to be able to wear them out with a dress, despite the fact that it takes me about 15 minutes to maneuver my feet and braces into them.  I was actually feeling pretty good about having my braces fully exposed. But when I stepped out of the car at the valet and I saw the first few people staring at me, I wanted to run away. I wanted to shrink into nothingness. I stood there feeling naked. I wished I had worn pants or a long dress. But there was no turning back. I tried to arrive right before I was slated to speak, but there was still about 20 more minutes of cocktails. I decided to go find my seat. I walked up to the front row and sat down. I didn’t want to be sitting somewhere farther back where I could see rows of people in front of me. I didn’t want to have to nod or make eye contact with anyone.  And as people were filing in to take a seat and  the podium was being set up, I took a moment to take it all in and just like that, it all came crashing down on me. I started to cry uncontrollably. I  held my husband’s hand and stared straight ahead, past the podium into the dark night sky. I tried to take a deep breath, I tried to think of distracting thoughts, but there was no match for what was flooding in: What am I doing here? How did I get here? Is this really my life? Am I really here to speak about living with this horrible disease? Are all these people really here for me tonight? Is this really happening? Is this really my reality? I was desperately trying to pull myself together before it was my turn to go up. And eventually, I did. But not surprisingly, as I gave my speech, there was more where that came from. Because of course, there always is.

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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