Of course, there’s some wiggle room in that. According to the doctors, I should have been diagnosed four years ago. My Cerebral Palsy helped to mask a lot of the issues I was having. I just thought all the problems I was having were down to the CP.
I got sick last year on New Years Eve, 2013. I had no idea what was wrong with me. I honestly thought I’d had a stroke of some kind. After a month being essentially bed ridden, I got better enough to return to work. Then things got a little rough again: I lost the ability to talk, the capacity to write and partially lost my sight.
I finally went to the hospital and was booked in for a battery of tests. After months of not knowing, I was finally told in April of last year that I had Multiple Sclerosis. I had to have a few more tests done to find out what kind of MS I had.
I was told on August 21st, the day before my birthday. The diagnosis was official and they would get me on my MS medication. At the time, people kept saying “What a horrible birthday present!” I always corrected them
It was one of the greatest presents I’ve ever received in a way. After months of being sick, of not being able to walk, of having to relearn how to walk, speak, eat, type; after months of depression, of being lost within myself, of not knowing who I was anymore, it finally had a name. It was something I could fight then.
I was diagnosed with Relapse and Remitting Multiple Sclerosis. From the pre-diagnosis and April, I had started calling my MS by the name of Max Shadow. I had named my CP Cybil Paulsen. It only seemed fitting that the MS had a name, too.
The past year has been wild, strange, bizarre. However, it was also a year of learning, of happiness mixed in with the shadows. It’s been a year of learning who I really am and what I’m really capable of.
I started by standing up for myself, by declaring that I wasn’t broken. I let go of a huge weight that was holding me down (in the form of someone who was supposed to care for me). When I was freed of that weight, I was finally able to work on making myself better.
I took Tarot classes and used the cards for personal growth. I took Reiki (got my level 2!), started writing again. Published my first book of poetry, did my first MS walk (I did all 3KM’s in under an hour!).
Max has taught me to find joy in the small things, to be thankful for kindness and to be more kind to others. To be more patient with myself and with other people. He’s taught me to change the way I think, that if there is an obstacle, there are always ways around it. That though the mountain seems very high, I can climb it and, if I can’t, I can always go around it.
My whole life has changed. I’ve taken on a workout routine, quit smoking and doing recreational drugs. I’ve started eating better and have learned how to take care of myself and how to listen to my body when it gives me warning signals.
That’s not to say that it’s been all great with Max. He’s taken away my speech, made it difficult to walk at times and balance is still a problem. He’s taken away my ability to drink beer, most dairy foods and my memory is shot. I look at my backlist of books I’ve written and can’t remember most of the stories. When I was putting together Talking to the Sky last year, I didn’t remember writing most of the poems. I used to remember the plot of every book I’ve ever read, was able to quote movies by heart. Now I’m lucky if I remember the last book I read after it’s done.
However, that’s okay. It’s okay because I made a choice last June. I decided to live. I no longer wanted to hide myself away. We only have one life (unless reincarnation actually exists that is) and I decided to make the best of the life I had. I decided to fight with every fibre of my being and I have fought.
I’ve learned that I’m so much stronger than I thought I was. I don’t recognize the person I was before last year. I know he was me, but I feel that the MS has given me a gift. I never take anything for granted. I am always thankful for everything I am blessed with and I am capable of more than I thought.
Way back in May of 2013, I crawled out of my hole and found my way out of the forest and into the light. Now, a year later, I am still bathing in that light, I am whole and I am happy. I love myself, which was something I would have never said pre-MS.
A year later, I am living the life I always wanted and that was always there within my reach. I just had to be given a push to find it. So while Max and I have not always seen eye to eye on a lot of things, I’m doing the one thing that I said I would do last year:
I’m living and that’s enough.
Happy Birthday Max. You may be a bit of a bastard, but here’s to year one. Let’s make it to year 70, okay?