Cake

I haven’t posted in a while.  That could mean one of two things: either things have been fine and I haven’t really felt an acute need to share emotionally intense thoughts or experiences or things haven’t really been fine and I’ve been trying (with all my might) to avoid confronting difficult feelings by detaching from all things HIBM, thereby making it difficult to reflect honestly and openly with myself about how it’s affecting me (let alone share it publicly). I wish I could tell you it was the former. In fact, until this past week, I think I convinced myself it was. Denial is such an incredibly powerful defense mechanism. It allows us to avoid, to suppress, to pretend. Its sole purpose is to decrease one’s level of anxiety. It helps us guard against feeling vulnerable and scared. But a lot of emotional energy is invested in trying to not let those difficult feelings in. And that is why it’s not always the healthiest nor  most sustainable method of coping. Because there’s only so long one can hold out in the fight against one’s reality. The energy required is too great. It always seems to win. And when it does, because there is so much that had been building up,  the defeat is that much more painful and draining.

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Rare

Today marks the 6th international Rare Disease Day, a day dedicated to raising awareness of rare diseases among patients, non-patients and the scientific community. It is a day that would never have been on my radar had I not been diagnosed with HIBM almost 7 years ago.  I spent some time thinking about what I could post on my blog to mark this day. And to be honest, I wasn’t coming up with much.

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Resolution

By the time I was diagnosed with HIBM, I had gone from being able to run to only being able to jog to walking with a minor limp. So, I knew my days of engaging in other, more strenuous outdoor activities were numbered.

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The Vortex

Today I had an appointment with a new orthotist (a person who fits one with AFOs/leg braces).  I wanted to find out if there were any newer, better options for me. If perhaps there was a new design that could be just as effective but perhaps somewhat more aesthetically pleasing than my black carbon fiber ones that come up just below my knee. Read more “The Vortex” →

One Day

People often tell me that I’m an inspiration. Or that I’m brave. When you see me, I am happy, I am positive, I am active and busy. I work hard, I’m grateful, I’m a mom taking care of two energetic young boys. And it’s true, I am all of those things. But brave and inspiring weren’t a choice. My alternative to brave is to give up. My alternative to inspiring is to fall into a dark abyss of anxiety and fear.
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Four blocks

Today was my son’s first official full day of kindergarten. A day filled with anticipation, excitement, nervousness and unknowns. And not just for him. If you’ve had the experience of launching a child into the post-preschool world, then you are familiar with the anxiety of a parent who is hoping for the most positive experience for his or her child. But for me, as with most new experiences in my not-so-new-anymore HIBM life,  there is another dimension to my anxiety. The sadness. There is a period of mourning that always has to take place with new situations. I have to confront new losses and thereby disrupt the homeostasis that I had previously worked so hard to maintain. I have to be reminded that I only get to feel happy and comfortable in my routine for so long.  This wonderful milestone of kindergarten for my son and our family, this “first” for him,  is unfortunately at the bottom of a long and growing list of first losses for me. Read more “Four blocks” →