My one year surgiversary is a week away!
I like acknowledging anniversaries of events. I’m not generally organized enough to actually plan something for the specific date, but I do like to take stock of the time passing, what has stayed the same and what has changed.
One year and a week ago I was in Baltimore. I probably would have been feeling pretty scared except for three things. Firstly, I was really out of it. There was a reason that I needed neurosurgery, and that reason kept me fuzzy, submerged in a haze of pain, fatigue, and other fun stuff.
The next reason is that I had something else to focus on – my family and I had forgotten my suitcase in Ottawa, and the surgery was in Baltimore. So around this time last year, my wonderful mother was running around Baltimore, taking pictures of articles of clothing and sending them to me as I essentially grunted in response. It was great.
The last reason is the most important one. I was in the midst of being both overwhelmed and incredibly supported by you, collectively. This surgery was not covered by OHIP, and it cost a lot of money. An insane amount of money. And I only had 3 weeks notice to get everything ready before the procedure was going to happen.
I created a go fund me page and the response absolutely blew me away. The outpouring of support, both in words and dollars, was more than I could ever have imagined. After going through 4 years of fighting alone for a diagnosis and proper medical care, all of the sudden having hundreds of people supporting me, on my side, was a truly indescribable feeling. At that point, I wasn’t even thinking about the surgery itself and what might happen afterwards. I was completely immersed in a feeling of awe, surrounded by more love than I knew existed.
I don’t remember much from the morning before the surgery. I remember my parents, teary eyed as they were told it was time for them to leave. I remember saying something that I thought was witty to try to get them to laugh. It probably wasn’t helpful. I remember being wheeled in to the OR and hearing the razor that would shave the back of my head start to buzz. And then the next thing I remember is waking up to my parents faces, voice scratchy from the intubation, saying ‘hey, I had surgery’ and them saying ‘sweetie, we had this conversation already, when you first woke up’.
I had been told that I might not notice any improvements in my symptoms for a couple of months, and there was no way of knowing how much my ability level would change. We did know that I was dying without the surgery, so it was a no brainer, pardon the pun. But I was prepared to wait and see, and be happy with whatever little improvements I might gain.
That night, still hooked up to a room’s worth of machinery and very high on pain medication, I managed to walk down the hall and back independently. That was more than I had been able to do for at least 3 years.
Now, one year later, I can tell you that the surgery was a huge success. More than a success. Not only did it save my life in the literal sense, but it gave me the opportunity for a new life beyond what I had thought would ever be possible for me.
I took some time away from writing as I recovered – physically, mentally, and emotionally. I thought I needed to get a handle on what my new realities were. I wanted to know what my baseline was, ability-wise. I wanted to have a plan, to know where I was at now, and to know where I was going. I wanted to feel a sense of security before opening myself up to the world again.
And I do feel secure. But not in the way I expected.
I trust my body to be unpredictable.
I trust my ability level to change.
I trust that I will always want to do more than I am capable of at any given time.
I trust that I will try anyways.
I know what I want to do, because I know what I care about.
And I know that there is a lot of love and beauty in this world, just waiting to be called into action.
Really, I couldn’t ask for any more security than that.
So I’m back. Salted Brownies is back. And with my current level of ability, I plan to work towards my goal of starting conversations about chronic illness in as many ways as possible. Through writing, music, comedy, drama, public speaking, film, and anything else that comes to mind. If you want to work on something with me, let me know!
Because if I trust anything right now, it’s that I’m ready.
P.S. Thank you all, from the bottom of my heart, for helping me get to this point. There will never be enough thank yous to truly express my feelings, but I’ll keep trying regardless.