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.
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.
A few weeks ago my sister, who has been tirelessly dedicating herself to planning this year’s NDF gala in November, asked me if I’d be willing to speak at it. I told her that of course I would. That I am always willing to contribute in any way she or the Board thinks would be helpful in terms of raising awareness and raising funds. She told me she’d get back to me once they had decided on the program.
Today is my 39th birthday and my blog’s 3rd birthday. As a gift to both of us, I decided to kick it up a notch and graduate onto a new and improved platform. One might wonder why I didn’t do this sooner (considering all of the snafus and technological hiccups I encountered with Blogger). Truth is, I think a part of me never wanted to have to invest too much effort in a blog for a disease that I wasn’t “supposed to have” or that I simply didn’t want. But since HIBM seems to be here to stay, I figured I may as well go for it. And take one more small step along the increasingly longer-than-expected road to acceptance.
It’s not like me to post two days in a row. I hesitated momentarily because so much of yesterday’s post, especially the piece from Gabrielle, was about being able to share the difficult feelings without feeling obligated to wrap them up with a bow. But I kind of can’t help myself. It just so happens that last night was such an incredible gift…
What does it mean to be doing “fine?” So often people ask us how we’re doing and we offer that up as a simple, basic response. Sometimes without even thinking. A good friend recently asked me how I was doing and I reflexively said “fine” because after all, I haven’t been feeling depressed, I haven’t been crying and I haven’t been living in my dark, scary “vortex.” So, presumably, I’m fine. But as I thought about it later, in a more reflective and honest way, I realized that although I haven’t been experiencing any overtly negative emotions, the truth is, I haven’t really been “fine.” At least not in a way that feels okay to me.
Those of you who have read my posts from the very beginning know that I was not always as open and honest and raw about my disease before I started blogging almost 3 years ago. In fact, for the first few years after my diagnosis, I couldn’t even say the word “disease.” I mean, I literally referred to it as “the thing” and then later on as my “condition” and eventually, my “disease.” But even though I could finally call it what it was, which was definitely a step towards acceptance, that didn’t necessarily translate into being ready to fully embrace it or move on to actually sharing it with others or speaking publicly about it. And I most definitely wasn’t open to meeting anyone else with the disease or even reading or hearing about other peoples’ symptoms. I have always allowed myself to go at my own pace when it comes to coping with HIBM. I have always owned up to the fact that for me, seeing other patients farther along the path of progression in a more disabled state only serves to increase my anxiety and interfere with my ongoing efforts to stay in the moment-every moment that passes- and not fast forward to what may come to pass.