It’s been too long since I last posted, but I do have a good reason. My life has been turned into a whirlwind. Last week, I travelled back down to the States for my post-op appointment. I knew that the surgeon was going to decide whether or not I needed more surgery immediately, and I thought that I was prepared for whatever he said. I was wrong. During my hour long appointment I learned that I would be needing more surgery - but it wasn’t any of the procedures that I had guessed at. It was bigger.
My immediate reaction was mostly relief. Yes, the procedure is terrifying, and I certainly didn't want to have to go through another surgery so soon, but for one of the first times in my journey with chronic illness my tests were clear, my symptoms made sense, and someone was standing in front of me, telling me that they should be able to help make it better.
It’s not a cure. I will still have a chronic, genetic, connective tissue disorder. But it should make a substantial difference in my quality of life.
So now I’m scheduled for major neurosurgery - a decompression and cranio-cervical fusion on October 26th.
Unfortunately, however, it’s not just the surgery itself that I have to worry about. This surgery, like my last one, is not covered by my Ministry of Health. I have to pay for it. And the bigger the procedure, the bigger the cost.
And that brings me to the real whirlwind. Because something has been happening that’s much bigger than surgery.
In an effort to afford this surgery, I started a Go Fund Me campaign. I didn’t want to. Asking for help in general is difficult, and asking for money is awful, especially for something that’s so individual and personal.
And if I had to ask for money, then I wanted to do it in a creative way. When I was 16 I organized a concert as a fundraiser for the MS Society of Canada. It was such a beautiful and uplifting evening, with everyone giving to each other in many ways, both musical and financial.
I would have loved to organize another concert, but unfortunately I’m just not well enough. I’m struggling to get through my daily tasks at the moment and simply don’t have the ability to create something big and exciting just now. I guess that’s kind of the point, the reason I need surgery.
So I started a Go Fund Me campaign. I typed up my story, held my breath, and clicked to share it with the world. I didn’t expect much, but I knew I had to try.
Within the first 15 minutes of the page being public, I had my first donation and 5 shares. The campaign has now been live for one day, and at the moment I am typing this the page has been shared 597 times and raised $10,708.
I am completely and utterly blown away. I have no words. The numbers are incredible, but the love and support behind them have gone beyond anything that can be accurately described.
My inbox is filled with well wishes pouring in, the campaign is plastered across my Facebook newsfeed with captions that have brought me to tears, and people from so many different parts of my life have been reaching out simultaneously building me up and devastating me with their kindness and generosity.
I’m caught in a whirlwind of love, and nothing makes sense. There is no logic, no reality - only the brightest, most beautiful parts of humanity.
Last year, at Thanksgiving time, I wrote a post that talked about how I was thankful for my chronic illness, even though I would never choose this life or wish it on anyone. I was thankful, because of the beautiful things that I had experienced - opportunities that I would not have had if I hadn’t been forced to step back from the path I had been following.
That post still resonates with me, but today it seems so inadequate. It seems to barely scratch the surface of the love and beauty that surrounds me and of the immense gratitude I feel towards it along with everything that has given me the chance to experience something so wonderful.
No words will ever be enough to accurately sum up how I’m feeling, so I’ll end with just two that come from every fibre of my being.