On Wednesday last week, I had an appointment with my neurologist.
This is a joy for me. My doctor is a delight and makes going to the hospital a joy. She’s always upbeat and I feel as if I’m meeting with a friend rather than a doctor that is responsible for my health and care.
I gave her a copy of my new novel, Life and Lemonade, and she was overjoyed. She had read the first book (Lust and Lemonade) and was desperate to know what happened. We had a nice talk about what I was working on, how work was going, that kind of thing. Then she asked a question that I was dreading.
“So, are there any new developments?”
Normally I don’t fear that question as everything has been status quo for five years on Compxone. No new symptoms, nothing to report. Except for now.
“Well, I’ve been having a lot of insomnia…and I’ve been dragging my right foot.”
“Every time I take a step. I’ve had to be really conscious of each step when I am walking.” I said. “I’m tripping a lot more, over things I should be able to step over.”
She ran her usual tests and then told me that I had lost some sensitivity to feeling in the right leg and that it was also a lot stiffer than normal. She asked how long this had been going on.
“A few months.”
She turned to my husband and asked what he had noticed. “When he gets really tired, he has difficulty walking.”
My neurologist scheduled me in for an MRI and brought up the possibility of switching medications. I had a moment of stillness at that. I haven’t had to have an MRI for almost three years, the last one I had showing that all my leisions had shrunk from the size of bright white moons and planets within my head to merely orbs the size of small stars or atoms.
So, it was about time for another MRI. I hate having them as I usually have to wear a face and neck cage that makes me feel like Hannibal Lecter; but it’s a good thing as it will give them an idea of what needs to be done.
The thing that gave me pause, that made me wish I hadn’t said anything, was the idea of new medication. I don’t have any side effects from the Copaxone. The other medications that are used to treat Multiple Sclerosis have a horrible list of side effects. If I have to switch to a new one, it will be like a temporary game of Russian Roulette until I find the one that works for me. The new medication might affect my ability to work, how I feel on a daily basis and seriously effect my life.
She prescribed a new medication for my insomnia. I voiced my concerns and then said “I used to be able to know that when I was in pain or having difficulty walking that it was my spastic Cerebral Palsy. Now, with the Multiple Sclerosis being spastic as well, I have no idea which one is causing it.”
I gave my neurologist a hug as I left with my husband. I knew that she was only concerned with my health and that she was doing what was right and what was good. I left with a small kernel of worry inside me, though. I didn’t like the idea of trying a new medication, should that be a possibility.
It had taken me so long to get where I was, to fight the Multiple Sclerosis into the shape that it now holds within my body. I had changed my diet, I had quit smoking, I had adapted to taking medication three times a day. I had started working out three times a week, taken on a swimming regime two to three times a week. I had been able to stop walking with my cane. I had done all this to make myself better. I had literally turned my life upside down, shaken things around and turned it right side up again.
The possibility of even more change frightened me; that a change in medication could mean missed work or possibly not working at all, some of the medications side effects are that bad. That the medication could wipe away everything I’ve done and everything I’ve been doing to make myself better, to truly live my life, was a frightening prospect.
I talked about this with my husband Michael and he said “Whatever happens, we’re in this together. You won’t be alone.”
That brought some comfort, quite a lot, actually. My husband is awesome.
On Thursday, I was walking home from an appointment after work and gave myself a really good internal talk. “I’m freaking out for nothing. I haven’t even had the MRI yet. I’ve conquered demons, climbed mountains, explored vast seas to find myself. I’m okay. I’m going to be okay.”
I took a deep breath.
“I’m alive for this moment.” I said out loud.
I walked along a path in Confederation Park where there was a man doing street performing. He was moving as if he was a robot and tipped his invisible hat in my direction.
“I’m alive for this moment.” I said again.
I walked by the fountain in the centre and saw a child throwing a penny into the water, given to him by his mother. The child cried out with joy.
I’m alive for this moment.” I said once more.
I watched as an entire flock of pigeons took flight, perhaps a hundred of them. They flew right by me and I felt the worry that I had been carrying within me, the angst and the despair over another life change, dissipate. The pigeons flew right by me and I watched them fly into the sky and far away.
I was as if they took all of the worry away, had hoisted it from me upon their wings and set it free into the air.
I am alive for this moment, then the next one, and then the one after that. Life is but a series of moment, fastened together into a narrative, into a story. I had a choice. I could choose how my story went.
So, I’m going to face whatever comes, whatever other changes if there any that come my way. I will face them head on and then figure out what to do. I have to remember that I am not alone, that I am not on an island and that I am alive.
I am alive for this moment and every moment after.