Wouldn’t that be so nice? If there were actually an entire textbook dedicated to HIBM? One with an index where I could look up what to expect a year, two years or 10 years from disease onset? With chapters like, “How Much Exercise is Okay?” Or, “What is the Role Hormones Play in Disease Progression?”
I’ve had a good few months. Like, really good. If you’ve hung out with me lately, you’ve probably had the fleeting thought of, “Um, is Jen on stimulants?” As in, I’ve been talking fast and thinking fast- what I jokingly refer to as feeling “high on life.” And though the only stimulant I’ve been using lately is coffee, I have managed to sustain such a happy baseline and keep such a positive outlook. I have whispered things to myself like, “maybe in my lifetime there will be muscle transplants.” Or even, “I’m sure the FDA’s going to approve a treatment any day now.” Basically, I have been how I think people hope that I am- feeling grateful and happy for all I’ve got. Feeling blessed to have an incredible husband, feeling joyful to have two healthy boys and feeling relieved to have a job that so suits my physical limitations. I have been a model happy, brave person.
I haven’t written in a while. Not since January in fact. Lately I’ve been spending some time thinking about why that is.
It’s definitely not for lack of difficult or painful experiences related to living with HIBM. I have come to realize that such experiences are built into my daily life and will continue to be a part of my daily life, for the rest of my life. In some ways, these last few months have been harder than most- I have attended a conference where I met a handful of other HIBM patients, all of whom were wheelchair-bound, except one. I have stepped out into the world now on numerous occasions using my new cane, forcing me to not only confront the fact that I am getting physically weaker, but also forcing me to endure extreme levels of self-consciousness and emotional discomfort. A level of vulnerability I have not experienced until now. And I recently returned from an annual vacation destination where evidence of my progression, as manifested by my difficulty in climbing up the same little hill I’d been able to climb so much more easily in years past, made it extremely challenging to stay calm and not fast forward to the day I won’t be able to climb it at all.
I debated posting this most recent speech titled, “Letting Go While Holding On” from the Sanford Burnham Rare Disease Day Symposium in San Diego last Friday. Partially because I did a fair amount of cutting and pasting from past speeches and partially because I actually fumbled a few times (I know, the horror). But I know I must use any opportunity I can to put our message out there.
Every year for winter break my older son has 3 weeks off from school. And every year I feel a bit annoyed about it. It just feels like an unnecessarily long period of time for winter break. But this year I decided that we would make the most of it. I planned not one, but two vacations. That’s sort of my new thing- planning vacations. A coping strategy I adopted in the last couple of years. It’s not only the experience of being away that is so therapeutic, but also the act of planning and the anticipatory excitement that sets in leading up to the experience. It doesn’t have to be and hasn’t really been anything exotic or extravagant, (my husband’s indulgent 40th birthday weekend in Big Sur an exception). Just something to take us- or me mostly- out of the routine and out of my head.
LTD. I’m not sure when I came up with that acronym, but it’s one I’ve been using for the last few years. I use it when I’m having peak moments. Moments when I’m at my happiest. When I am my most fulfilled. When I am overwhelmed by gratitude. When my soul is at peace.
LTD stands for Living The Dream. It’s shorthand for life is good. It’s this 3 letter code that I often blurt out to my husband or sister or best friend when I am literally living in what feels like a dream. We all have our LTD moments. Just look at people’s Facebook newsfeeds, they are often full of them. The interesting thing about my LTD moments is that I often find them at the simplest, most mundane times: watching my husband make pancakes with our boys on a Sunday morning, bobbing in the waves on a beautifully sunny southern California summer day, holding my husband’s hand while watching one of our sons perform on stage. It’s in those moments when I feel like there’s nothing more I would want or need as long as I have this. But recently there’s been a dream, a simple one, that I had not been able to live out.