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

Wednesday, September 17, 2014

Quick follow-up/Love is Everything

I’m not usually one to blog two days in a row, so I will try keep this short and to the point…

The profoundly therapeutic effect of the kind of love and compassion that comes pouring in after a blog post is one that never ceases to amaze me. My reality from last night to today hasn’t changed, yet my emotional state feels so much more calm, regulated and at peace. Less fearful. More hopeful. Less alone.

I have spent a lot of time thinking about this phenomenon. How it happens. What factors contribute to the shift in mood.  Wondering how I can feel so good when a part of my life is so bad. And it always comes back to the same few things: authenticity, honesty, vulnerability and a willingness to love and be loved.

You may be thinking to yourself, “There she goes again with the vulnerability piece.” But I can’t help myself. And I should warn you, I am probably going to be talking about it until the end of my time here, because I truly believe it is the key to a meaningful and successful life. And if I sound preachy, I apologize. But I like to think I have some street cred when it comes to this, which is why I hope you’ll trust me and just sit with it for a moment.

It feels so scary,  to expose yourself.  There are so many unknowns. And there are no take backs once you let people in. But if you choose to surround yourself with people who can hear it and hold it, if you invest in friendships by truly letting another person in on where you’re at and if you allow  them to feel safe enough to do the same, well, then the internal emotional quality of your life no longer becomes dependent on your physical state or your income or  your status or any other aspect of your external reality. Instead, true happiness (at least in my humble opinion) comes from true love. Romantic love, friendship love, family love, community love and of course, the love of oneself.

And speaking of compassion for oneself, for those who wished me luck today, who thought of  me and  rooted for me in anticipation my appointment, I should share that in the end, I did not/ chose not to go. Of course, my first thoughts or rather,  judgements of myself were that I was chickening out, that “I guess I wasn’t as brave as I thought I was.” (Unfortunately, that voice is often the loudest at first.) But then I gently reminded myself that there are no rules or “shoulds” in the game of coping. We all have to go at our own pace. We have to truly understand ourselves and honor where we’re at. Everyone’s process is different. If you force it before you’re ready for it, it almost always backfires. I have learned that lesson enough times to respect the process.

I didn’t reschedule my appointment yet. But I know I will. I know I will get there. For the time being, I am just going to keep staring at the driveway through the window of my living room…

Tuesday, September 16, 2014

Preparing for Landing

The other day, I  picked up my older son from school and tripped and fell on the way back to the parked car. It happens sometimes.  As we waited at a stop sign  on our way home, I saw one of the dad’s from his kindergarten class 3  years ago walking in front of us.  I knew he had had a stroke a few years back. He walked with a limp and for the first time, I saw him crossing  the street using two canes. As I stared at him through the windshield, I decided, somewhat spontaneously, that there was no better time to broach the subject of  a cane with my son than at that moment. “Oh look, X’s dad has two canes. Maybe I’ll get one like his,” I said. And then waited. Right away he responded, “You’re going to get a cane, mommy? That looks weird! That would be weird. I don’t think you should get one.” Of course, I validated his feelings with a simple, “Yes, you’re right. It would look different.” He went on to ask why I needed one. I explained that I didn’t necessarily need one, but that as different and as “strange”  as it would be to use one, I’d rather be safe than actually risk getting hurt. And so we left it at that. And that was satisfactory to him.

It was the first time I had put it out there to him. And like any 7 year old, his main concern was what it would look like. He wasn’t concerned about what it meant. He wasn’t worried that this indicated I was progressing, that I was getting worse, that it was becoming harder and harder to hold off from adding any new assistive devices or hardware into our soft and cozy life. I was grateful for his naiveté. I have always cherished his unawareness of the true reality of my disease and will do so for as long as it lasts, but I am also well aware that he is a bright and attuned little boy and it’s only a matter of time before he starts to truly understand.

To be quite honest, I don’t even know how to blog about the prospect of a cane. There is such a nightmarish surrealness to it.  I have trouble even believing that tonight, this night, September 16th, 2014, I am writing about how I will need a cane.

It started a couple of weeks ago. My husband and I were out to dinner and we decided to stop for ice cream on the way home. We parked across the street, a boulevard in fact, and halfway through the crosswalk we realized we weren’t going to make it in time. That hadn’t happened in a while. Probably because we usually either park close to where we’re going or he drops me off and then parks. And maybe because we had just had such a fun dinner and some wine, I almost forgot to consider that maybe it was a bad idea. So after we made it across safely enough,  for the first time we had a frank discussion about the fact that it was probably time to take that next step. And what was amazing about that talk was that it didn’t feel overly emotional. It felt very rational and logical.

And so I rode that feeling and the momentum that came along with it. I asked my in-laws to bring down the wooden cane that belonged to my husband’s grandfather (which has been staring at me every time went up there to visit).  I then even made an appointment to officially be fitted for a cane with the physical therapy department at Kaiser (scheduled for tomorrow afternoon). I was on it. I was doing it. I was making jokes about blinged out, diamond-encrusted canes and canes of different colors to accessorize my outfits. And on and on. And then today came. And all that courage and conviction I had been wearing started to unravel. I started to ask myself questions- do I really need to go in? (I had received a call saying that a cane was actually ready to be delivered regardless of whether I showed up). The physical therapist will most likely never have heard of HIBM and I’ve been there before and it’s not fun. Will he causally say something unintentionally insensitive that will ruin me? Will it really be that productive? Will the emotional cost outweigh the benefit, if any? Then, on the other hand, what if he has some insights into something, anything that could be helpful? What if there are lots of different canes to choose from and he can only know the best  one for me once he sees me? And then it’s- I’m not actually going to start using it on a daily basis yet, so why not wait until I really truly need it all the time?

So I’ve spent tonight talking, processing, crying, trying to figure out what to actually do tomorrow. But the most painful truth underneath it all is that it doesn’t matter whether or not I show up to the basement of Kaiser tomorrow to be fitted for a cane. That’s irrelevant. The fact is that I’ve reached the stage in my disease where I’m actually starting to need one. Where there’s no corner of denial for me to run and hide in. Where there’s objective evidence that I am continuing to get worse no matter what I do, what I eat, how much I exercise and how many supplements I take. It’s one thing to have this disease. It’s another thing to have to wear braces which I can hide when I want to. But this. This is not a little step down. This is a staircase down. This is me 8.5 years in. I can try not to think about me in another 8.5 years. But the truth is, by then it won’t being going from good to bad. It will be going from bad to worse.


These  moments are by far the hardest. These moments when the reality is no longer just floating around and hovering overhead but instead actually starting to land. I keep trying to steer it away. Anywhere but here, I beg. But it’s useless. Eventually, it does what it always does. It parks right down in front of me. So I’ll stare at it for a while. I know I’ll have to climb in eventually. But for now, I think I’m just trying to get used to it being parked in my front driveway.


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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