Thursday, January 19, 2017

How to Reinvent a Life: Happy Birthday Jessie!

photo by Rachel Gray
Today is Jessie's birthday. And almost the one year anniversary of  her brain surgery in Boston and subsequent second stroke, which left her without language, memory, the ability to initiate movement, or follow a common sequence of actions. One and a half years since her first stroke and diagnosis of Moyamoya  (a very rare degenerative neurological condition, more common in people with Down syndrome, where the inner carotid arteries supplying blood to the brain become blocked) while on holiday down in Maine. Fifteen months since my mother died. A year in hell. Too much darkness to want to chronicle or blog, my energy spent just trying survive. And that only made possible by my best friend CG, Dan (best partner ever and love of my life) and the wider community that raised money, food, and spirits that kept my family moving forward into an uncertain kind of healing.

So, we are one year out and Jessie has recovered sufficiently to demand that I write about her again. Language has returned. Movement. Passion and her joie de vivre. The darkness and absolute hell of a watershed stroke in the frontal lobes I will leave to another time. Just know that it involves aggression, impulsivity, lack of control and planning, and sensory flooding. For now, we are in healing mode. Healing, as Jessie has banned the word “recovery.’ She has had so little control over what has happened to her, that when possible, we grant that wish!

After Jessie’s first stroke (which was relatively minor, as I look back on it now), we promised her that her dreams were still the same, we were just going to take a bit of a different route to get there. She was just on the verge of moving out, she and her boyfriend had plans to continue and deepen their relationship, and the company she was dancing professionally with—Propeller Dance—was maturing and demanding more and more of her time for rehearsals and performances. It was a lovely blossoming life.

Then, in what felt like one quick moment, it all imploded. She couldn’t eat the food she wanted (her swallowing was compromised and she had to be on a soft food/minced diet; she needed to drink more than 2.5 litres of liquid a day (to keep the blood flow to her brain at an optimal level to decrease her chance of a another more serious stroke; she couldn’t engage in strenuous physical activity (good bye dance and performing); and she had to have brain surgery somewhere by someone who had some expertise in this very rare neurological disease.

In the middle of all this, my mother was diagnosed with a heart valve defect, stage IV melanoma, and died.  Then we travelled (both virtually and by car) the country looking for a surgeon and centre with experience with Moyamoya, booked (and paid for) brain surgery with the brilliant Dr. Smith at Boston Children’s Hospital, sailed through surgery only to suffer a major watershed stroke across the frontal lobes 6 hours post-op. Eight days in ICU. No sleep. Living on Starbucks coffee and steamed oatmeal. And then, and then . . . This quick summary of loss will have to do for now. I will find other places to write the darkness.

And I am blogging again because I don’t know what else to do with my “one wild and precious hour” (to paraphrase Mary Oliver). Precious indeed, as Jessie requires 24-hour supervision/care. So in the mornings, when the personal support worker arrives, Dan and I walk to our neighbourhood coffee shop and enjoy each other’s company and some caffeine before he heads off to work  and I write or walk or generally let go of all that binds me for an hour or so.

Here we are again, about to celebrate her birth and I marvel at (and often, to be honest, curse) the blessed chance to reinvent her (and our) life over and over and over again.