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.
Dear Equinox Westwood:
I knew I was fooling myself when I first took a tour of your gym 1.5 years ago and thought that it would be a good idea for me to join- you know, given the 2 flights of stairs just to get to the front desk and then another 2 flights of stairs to get to the locker room. But I just couldn’t resist- the incredibly convenient location across the street from my office (and a mile from my home), the almost-never crowded pool where I could start doing the long put-off aquatic physical therapy exercises and of course, the unlimited access to Kiehl’s bath products. I told myself I would build the stairs into my exercise routine and that even though there was no elevator from the pool to the locker room, I would manage. I wanted it so badly. I wanted to enjoy all of the benefits that other people do from belonging to a fancy gym. I didn’t want to listen to the whispering voice in my head reminding me that I actually live in a different body from all those other people. I didn’t want to miss out on yet another thing because of my disease. And so I joined.
That feeling you get when…
…you physically can’t move out of the way (as in, just side step) when someone’s trying to get by and he or she thinks you’re just being rude.
…there’s an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run to your kids when they may need you most).
…someone who’s ahead of you (and maybe in a rush) is being kind by holding the door open for you and you feel terrible because they don’t realize how long they will have to wait until you hobble your way over to them.
Read more “To my fellow HIBMers who know these feelings all too well…”