Last night, or should I say, very early this morning, I headed downtown for an MRI (Rich took me of course!). My appointment was scheduled for 12:45 a.m., and I didn’t get home until just after 3 a.m.
This appointment had been scheduled a YEAR ago to coincide with an appointment I had back in January at the Neurofibromatosis clinic. I’m already due for another follow-up at the clinic in a few months. It’s the only clinic of its kind in Canada, but I still can’t wrap my head around having to wait an entire year for this MRI. The clinic prefers that imaging be done through the hospital it operates out of, Toronto General Hospital, which is why the wait times are so incredibly long.
At least by the time my next appointment rolls around in the new year, the team will finally have these results to use as a baseline moving forward.
I know I’ve been so consumed by my accident over the last few months that it’s almost become a distraction from all the OTHER mental and physical health shit I still deal with and struggle with on a daily basis.
Neurofibromatosis is one of them.
About 18 months ago, I was diagnosed with Neurofibromatosis type 1 (NF1) by a dermatologist. A biopsy was done right away to help confirm the diagnosis. I remember feeling both confused and grateful that he was able to put a name to something I’d been bringing to the attention of numerous doctors and dermatologists for years.
Looking back, the signs were there. Several of them.
I have what I now know are neurofibromas, along with café-au-lait spots, scattered across my body. Some of the tumours are under my skin, while others are very visible on the surface. After years of not having answers, finally having a name for it was validating, but it was also overwhelming to learn what that diagnosis actually meant.
NF1 is a genetic disorder that affects the nervous system and can cause tumours to develop along nerves, as well as changes in the skin and other parts of the body, including the brain and spine. While many of these tumours are benign, some can cause severe complications, and certain types carry a risk of becoming malignant.
I’ve likely had this condition since birth, without even knowing it.
As I get older, and with the many hormonal changes my body has gone through, I’ve noticed more and more of these tumours appearing, hundreds likely by now. It’s something I’m becoming increasingly aware of, both physically and emotionally.
I’m still in shock that it took more than 50 years for someone to finally put a name to what has been going on with my body.
Over the past 10 years or so, this condition has added another layer to the body-image challenges I’ve already struggled with for much of my life. As the tumours become more visible with age, I’ve become increasingly self-conscious. Sometimes, I feel like people are staring at me, especially during the summer months when more of my skin is exposed. It’s hard to explain what that feels like unless you’ve experienced something similar, the constant awareness of your own body and the worry about how others might see you.
Since my diagnosis, I’ve lived with a constant mix of overwhelm, fear, and unanswered questions. One of the hardest thoughts to sit with has been the possibility that I may have unknowingly passed this genetic condition on to my children. That uncertainty is something I carry with me, even when I’m trying to focus on everything else life throws my way.
I’m also being screened more regularly now for breast cancer because NF1 is associated with an increased risk. The MRI I had last night was to help the clinic establish a baseline and look for any concerns involving my brain and spine, including lesions or other changes that may need monitoring over time. The scan required an injection of contrast dye called Gadovist to help provide more detailed images.
It sucks that it took a year to get this MRI. A YEAR. But despite the frustration, I am profoundly grateful that this clinic exists, and that it exists here at home. Having access to a team that understands this disorder, knows what to look for, and can help guide me through the unknowns ahead means more than I can put into words.
Because the truth is, the unknowns as I get older are scary. Not knowing what might develop, what might change, or what I may have to navigate down the road is a lot to process, this also includes my eye sight too.
Like I didn’t have enough shit to deal with already!
Life feels heavy sometimes, and lately, I’ve been physically and mentally exhausted constantly. But even in the middle of the appointments, diagnoses, waiting lists, and uncertainty, there are still little moments of peace and beauty to be found.
This Thanksgiving weekend, I’m reminding myself that I don’t have to have everything figured out to be grateful. I can feel overwhelmed and still find joy in the changing colours on the trees, time spent in nature, a long weekend, and the people I love.
I’m especially thankful for family and friends who make the hard days a little easier, and for the reminders that life is still happening beyond everything I’m navigating.
I may not have all the answers, but I can appreciate what’s good and find gratitude in the little things.
Happy Thanksgiving Canada 🦃
