It’s May, 2016 and I’m just about 11 months into treatment. The late night / early waking version of insomnia has been back lately. Now devoid of the classic panic I used to experience, I sort of enjoy the quiet hours of contemplation it affords me. I mean… I’d RATHER be sleeping. But this isn’t the worst fate. Anyway, laying awake in bed tonight I ducked into my “drafts” folder on this blog… so many half written posts. The one below was the first blog I ever wrote here. And it’s a gem.
I wrote this just after I tested positive and was about to be diagnosed with late stage Lyme disease. Too afraid of sharing a part of my heart that I hadn’t acknowledged even to myself in so many years (nearly a decade), I didn’t have the guts to publish it back then.
Honestly, it’s scary to share even now. I never realized how intensely my MS diagnosis altered my perception of what I could have in life, of what I deserved, of what I was free to pursue.
But I read this now and I’m so moved. Because here I am, nearing the completion of my first year of Lyme disease treatment, and I find my perspective on my ability to be well has changed and along with it, my beliefs are changing and my hopes and dreams are catching up. I believe.
I believe I can get well.
I believe I can choose any future I’d like.
I believe I can let someone love me in a real, meaningful, “rely on me” kind of way.
And it’s fucking amazing. And terrifying. And exciting. And very very strange… like this sort of hope still doesn’t belong to me. But I’m opening to the shift. I am so excited to be sitting in a place of greater possibility than I ever allowed myself before.
Written in June, 2015:
I spoke to a friend the other day – another battler of lifelong chronic illness. Thanks to her encouragement, I had a momentary glimpse at something really exciting.
She’s happy for my impending diagnosis of Lyme. It’s a thing that only chronically ill people would understand, being happy for such a terrible diagnosis. But Lyme disease is different from things like MS (an incurable degenerative neurological condition I was told I’d have the rest of my life). With Lyme there is good news: It’s treatable.
“You could get well,” she said. It stopped me in my tracks. I could get well. What a thought.
Ever since I was diagnosed with MS at 21 years old, ongoing wellness has never been an option in my mind. My mind was permanently changed with the idea that life is to be lived for right now, that tomorrow is a gift and not to make too many commitments. And as a Buddhist kid who really doesn’t believe in permanence in any real way, I’ve adapted well to this idea and have gone about my merry way building a life for me that I could step out of at any moment no problem.
She asked me, what would I do? What would I do if that wasn’t true anymore? What if tomorrow were just a little more sure? Surprising imagery came to mind – a family. Kids. Adoption. Partnership. For once not being afraid to ask someone else to rely on me, get close, say crazy things like “forever”. Wow.
The very thought of it made me uncomfortable, like those ideas don’t belong to me, like I’m not allowed them. She gently prodded “I think it’s important you start thinking about what you’d do with a healthy life.”
I don’t think I ever realized how much the acceptance of my fate with MS colored my perception of my future. Admittedly, if it was caused by was Lyme all along, and treatment could in fact make me well, the future would hold a lot more options for me. Of course, this early on, none of that feels like a good idea to dream about. I mean, who knows how any of this will turn out or how well I can really hope to be with treatment.
For now I’ll dream about the possibility for new dreams. Let’s start with that.