Dear Stiff Person Syndrome,

Dear Stiff Person Syndrome,

This letter’s been a long time coming, three years, in fact, plus a few days. I count them, you know .. each and every one. They all represent another moment that takes me further from the life I knew and loved. I’d hoped that if I waited, I could write this from a place of acceptance or more ideally, as a retrospective of our time together. Our relationship’s an abusive one .. the way you attack my body and mind. If what I’ve heard is true, then I’m not unlike most victims, suffering in silence. It’s just so intimate, what we share, that it feels almost obscene to utter out loud what it is you do to me.

During the times you’re especially violent, I find myself going back in my mind. To the Transcendental Meditation Center my parents took me to. It was such a peaceful space. I remember the skylight in the ceiling, the first I’d ever seen, and colorful floor pillows spread all around. If I focus hard enough I can even smell the green apples, the ones that filled the bowls on the reception desk. Dozens of them so carefully arranged I never did take one to eat, afraid if I did, they’d all come tumbling down. An instructor gave me my own special word to meditate to. At least I thought it was only mine until my brother told me it was the same word given to all the children. This irked me more than it had a right to, but being a child of the 70’s meant shared bedrooms and toys and the thought of something mine and mine alone was a small treasure. I was taught to speak my word slowly in my head over and over again, to slow my breath and focus only on being present in that moment .. letting go of any thoughts or concerns of the world around me. What problems I could possibly have had as an 8 year old to warrant the need for this was irrelevant. It was family time. I would have preferred going bowling or to the movies like my friends did with their parents but I was still glad for the time together. The fact that someday this would have such meaning for me is something I never could have imagined. I hadn’t even consciously recalled those memories until I became desperate for a way to calm the fear and sadness that came when your presence in my life disrupted everything I took for granted.

Part of the trouble in accepting you wasn’t only because you took me by surprise. It was because I’d reached a place of such contentment. Running a business, raising our kids, spending time with friends. I’d even taken up running and yoga again. Things felt full and satisfying and I was more than just a little proud of myself. It was all coming together, until you pulled it apart. I’m embarrassed now, not just by my ego but the enthusiastic mindset of doing and having it all. I thought somehow I’d earned it .. paid my dues.

The other comes from the fact that you know me so much better than I do you. Not for lack of interest on my part. I want to know you better .. all for selfish reasons. I want to know what you’re going to do to me and when. It’s not to be, though, at least not yet. My doctors tell me that you’re rare .. one in a million for most, rarer still for me because you’re a variant ..a distant relation. It’s a cosmic joke, I think, that you and I ended up together. Anyone that knows me can attest to my insatiable need for information. They’d tell you I’m a fact gatherer, a list ticker-offer, a planner, a doer … annoyingly so. Which is why it frustrates the hell out of me not to be able to see you in the light.

There are things though, for which I owe you a huge debt of gratitude. Like helping me to realize what’s really important and what isn’t. Encouraging me to be truly thankful for all that I have and stop believing in the ridiculousness that busyness equates to happiness. Helping me to see that I’m not so special. That we each have our own unique challenges and troubles. I’ve stopped ‘shoulding’ on myself too, letting go of unrealistic expectations. I now dole out my energy like fine china .. mindful of the delicacy and value. Kindness on the other hand, compliments, compassion, encouragement and laughter I let flow whenever I have the chance.

Maybe there’s truth to the idiom that the apple doesn’t fall far from the tree, as much as I’d like to protest. The mantra I hear in my head these days is one I read by Pablo Picasso. “The meaning of your life is to find your gift. The purpose of life is to give it away”. What I longed for more than anything these past few years was to hear another voice say “I understand’ or ‘Me too’. Unfortunately, there wasn’t a place for us to find each other, those of us that know you, and so I’ve walked with you alone.

Science journals and the World Health Organization tell me that there’s something we’re doing in our environment to make you stronger and more far reaching. Just like your cousins Parkinson’s, Autism and Alzheimer’s. I know now it won’t be long until I’ve found my tribe. Selfishly, I’m excited to think of how satisfying that’ll be, although it does nothing for my self esteem to care so little about the impact this will have on others. I feel like I have a responsibility to share the story of my time with you. To let others know that they’re not alone. To relay the information I’ve gathered not only by our familiarity but through my insatiable study of any and every article and report available.

I have a favor to ask. One I hope you’ll consider. I’d like for you to give me time ..  to move slowly and be considerate of the effects you have on me and mine. In return, I’ll practice acceptance and patience. Two traits that have never come easily but are absolutely necessary to the cause. I’d like to think that if you’ll do this for me, it’ll allow me to find my voice and raise it. To somehow make a difference, this speaking up and out.


Forever yours

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