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

Saturday, December 17, 2011

Reality check

That was really hard.

We were invited to my uncle’s house for shabbat dinner tonight. My husband Noah couldn’t go because he had his holiday party for Kaiser at the same time (doctor’s and nurses only). My dad was also going to my uncle’s and together we decided he would come over early so we could drive together, mostly because I was concerned about coming home alone with both boys and getting them both inside safely.

So, all was running according to plan, (except for the addition of my 4pm visit to the ENT doc to evaluate my month-long laryngitis spell). At the last minute, I decided that my dad and I should just take our own cars. I was going to leave around 9pm (that’s early for Persian shabbat dinners) and I didn’t think it was necessary for my dad to drive all the way home with me, then pick up his car and then head back to my uncle’s for the rest of the evening. Plus, he was on-call and what if he had to go in to the hospital for a delivery? I honestly thought it wouldn’t be that big of a deal.
But it was.
When I brought both boys home, Lev was already asleep in his car seat. Asher was easy. He got out of the car and just wanted me to let him in the house because he was cold and tired. I said he could climb into bed and that I’d be there to tuck him in. I never made it in time. He eventually fell asleep. But that was not such a big deal. Better, in fact, because then I could take my time strategizing how I was going to get this 22+pound baby into the house without waking him. Meanwhile, Noah kept texting me asking if he should leave the party to come home and help me, but I genuinely thought I’d be fine.
The first challenge was just getting the car seat out of the car. Because my left wrist and fingers on my left hand are weak, I can’t really get a strong enough grip on the bottom end of the car seat, so I always have to be right next to the stroller and hope my fingers don’t slip. (I would never risk his safety, I somehow always manage, but it’s always a major accomplishment. Luckily, tonight was fine). Then, I strolled him up the path and got to the two steps. I usually use the other stroller when walking (or someone’s always there to help me) and in that moment I realized that no matter how many different ways I tried, I wasn’t going to be able to get the stroller up the stairs. I tried to tilt it going one way forward and another way backwards. Then I decided I would just lift the whole seat off the stroller, and onto the top step. Okay, I was able to do that. Then I carried the stroller up separately. And that’s where I really got stuck. I thought I could just put the car seat back onto the stroller and stroll him right into his room. But I cannot lift the car seat up off the floor. No matter how hard I try. Then I thought if I shifted the big handle forward, I could hold it by the handle rather than from underneath. The problem with that plan was that my left hand isn’t strong enough to squeeze down on the part of the handle that releases it to pull it up. So I tried to release it with my right hand and quickly move my left hand there to keep it, but I just couldn’t do it. By then I turned off the bright light on the patio because he was waking. I stood there in the dark, staring out into the sky, trying to juggle wanting to give up and break down and feeling proud of myself for not completely losing it in utter frustration.
Then I saw some dinner guests leave the house of the neighbors across the street. Ahhhh, this was my chance. My neighbor came out with her dogs and her girls and I called out to her. But then another neighbor with a dog walked up to her and their dogs started playing, loudly, on their front lawn. I called out to her a few times, but with my scratchy, quiet laryngitic voice, she just couldn’t hear me. It also didn’t help that I was wearing all black while waving and standing in the dark night.
By then I gave up. After all, was I seriously doing all of this in an effort to avoid waking my sleeping baby? Yes, but it was clearly more than that for me. I bent down to the floor, unbuckled him, and with all the strength I had, lifted him up and out and managed to stand back up. Of course, because I did it so clumsily, he woke up, but I managed to get him into his crib where he fell right back asleep.
If you’re reading this, I imagine you may be thinking of all of the practical, wiser ways I could have avoided this: have my dad drive home with me, tell Noah to come home and help me, hire a babysitter, decline the invitation to go out, etc. But it’s not the rational thinking that’s hard. I know all of that. It’s times like these when I am reminded of how hard it still is for me to accept that this process is happening to me, to my body and that I have to take responsibility for it and act accordingly.
I know the game I’m playing with myself. I know that I still sometimes turn to denial to cope with this disease because that’s the safest place for me. I’m trying to hold onto the hope, maybe even the fantasy, that I can still do this. That I can be like so many other moms, like so many other people. That I can still be independent, that I can still be capable, that I don’t have to inconvenience others.
But the simple truth is, I can’t.
And sometimes there’s just no way around it.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

About me