What's up with Sonya Dann

Well it's been a while and I'm starting to get a little better so thought I'd best let everyone know a little of what's been going one with me. Apparently I have tumefactive MS. It looked like a brain tumour, for a little at the beginning, (and for a while I thought there's a good chance I have 5 years or less to go) but it is actually a super special kind of MS. Good times!

I'm still alive. Above's a picture of me with my parents in line for the Richmond Night Market this past August. Yes, I have purple hair. Because why not? How would you change if you thought you were going to die? 

If you use LinkedIn you may have noticed that I've been on sick leave since early 2014. It's been a rough ride. But as Winston Churchill said (according to the internet, and the pic I added below) "If you're going through hell, keep going." Seems like sound advice to me so that's what I've been trying to do.

I'm going to skip some of the details in my descriptions below. I don't enjoy reliving the experience and writing about it sometimes makes me cry, so I'm going to be a bit broad and brief below. I'll link some images of my brain MRIs so you can get some idea of the gravity of my situation. (Though the neuropsychologist did say that scary looking MRIs and dysfunction do not always go together - there's not as big a correlation as I would have thought there would be.)

I spend the first months of 2014 feeling ill, flu-y. There was a flu, some noro-virus, colds, etc. going around town at the time (I was living in Nakusp still) so I assumed I had the flu through January, I starting feeling a little better but then it got worse until my other, scarier, symptoms began in early March.

One Monday morning I went to my computer to work (I worked from home, hooray!!!) and I was very uncomfortable, not in anyway I could pinpoint. At some point my fingers on the right would not hit the correct keys on the keyboard - I've been a typist for a very very long time (20 years already) having started out as a receptionist and then secretary at 16. So it was very weird. Also weird was that I couldn't exactly focus my eyes. My eyes were behaving like I had worked 12 straight hours staring at a wall of little numbers in an excel spreadsheet rather than a Monday morning, plus I didn't do as much excel work in that job - it was mostly words and graphs and html. I ignored it.

Later the next day my speech started to go funny. Now most know I like the tipple but I was trying a cleanse because I had been so sick, i.e. no beer. But I sounded drunk. No question. My step-sister the parametic heard about my symptoms (small town) and made me promise to go to the hospital and I did. They did some tests, decided I wasn't having a stroke and sent me home. [Keep in mind Nakusp is small, and what I would loosely describe as a town in the bush, the forested middle of nowhere (the real bush is further north). The local 'hospital' is better described as an unequipped health centre (like they have in the north). One has to drive either to Trail or Vernon to get any tests other than blood or Xray.] Once home the symptoms started to get better, and I hate doctors and hospitals, anyway, so I was glad to be done with it... I thought.

Days later I lost most of my speech, writing, and my right side. I'm sure there's plenty I'm forgetting as one of my symptoms is memory loss. No pot ever gave me short term memory loss like the illness that began in 2014 did and does.

Scary is an understatement.

I'm not afraid of death. (And actually I often find people who are afraid of death to be very strange.) The idea of a brain tumour didn't disturb me because I would likely die. No, it's being disabled that scares me. Not being able to care for myself, the loss of my independence, having to rely on others: that's what scares me. I'd much rather die than be disabled and not be able to be independent. So I get to have the scariest situation that I could imagine: I will spend my life more and more losing access to my body, losing my independence, having to increasingly rely on others, all the while objectively watching it happen (probably without the comfort of an early death). I get to experience what I've, as an adult, always thought is the scariest outcome possible (since college when I took a neuropsychology class called 'Brain and Behavior' and learned this happens) - demyelination of my neurons, losing access to ones' body, and becoming increasingly disabled and reliant on others.

I didn't notice the specifics at the time. What I remember is I kept running into walls. If I was going through a doorway I promise my right shoulder hit the jamb every time. I couldn't hold a cup in my right hand. My right knee was swollen into the straight position and I would have to pull myself up the stairs with my left hand hoping the hand rail wouldn't come out of the wall. I was super freaked out because I basically couldn't communicate - with both my speech and writing mostly gone it was really difficult to express myself to everyone from the doctors to my mom.

Years before I had had recurring dreams of not being able to take off my UBC sweatshirt and at the time I thought it was about how much I disliked the program I was in. But then that happened during this period. The day where I had my right side in the morning but by evening it was largely gone I had put on my UBC sweatshirt and at the end of the day I could not get it off. I simply couldn't get that sweatshirt off by myself with the paralysis that had taken over. I had to get help.

That experience, and the 20 months or so since, is the scariest of my life. No other experience comes close. Even getting sick in the Ukraine and having to go to a hospital in the 1990's in Ukraine (it was a third-world country, there were people lining the halls waiting to see a doctor some sitting on the floor, the operating rooms had windows that opened and there was no screen in it) was not a scary as losing my ability to communicate and my right side (I am, or was at least, super-duper right handed.).

Plenty has come back, with lots of work my right side is a lot better. But my typing still isn't anywhere near as good as it was. I can speak mostly normally again except some days when I slur a little, even without a drink but especially if I do have a drink or two. I don't often run into walls anymore but have balance issues (I can't really do the drunk test where you walk a straight line one foot directly in front of the other anymore - the neurologist always wants to see that one), dizziness, vertigo like I never had before. Some days I can't drive because of the nausea/dizziness.

My right eye is funny now and I have 'stuff' in my right field of vision. It's as a result of a condition called intermediate uveitis. I have an essential tremor. I can't remember my words. And my hand-writing looks bad and feels difficult.

But the exhaustion is the biggest thing. I'm so tired all the time. I've never experienced this before. It's absurd how much sleep I need. I can sleep for 10 hours wake up at 7am and by 11am I need a nap (I hate sleeping during the day but's become required). If I don't have a nap by 2pm I'm like King Kong - pissy like you've never seen before and ready to throw shit. I take pills intended for narcoleptics to help with that, and they do help. But even with the 'wake-up pills', as I call them, I sleep for almost 12 hours at least once a week. The night before I wrote this I went to bed at 8pm slept for 11.5 hours. It's the only time I wake up feeling rested. I try to remind myself that the brain heals itself during sleep.

The most dismaying thing is that my thinking is slow, very slow. And that I can't remember my words, I hate that. And I have trouble reading, and I've lost the ability to see editorial mistakes, and I see mistakes that aren't there because I don't read right (I see the words all jumbled up and have to go back slowly reading each word individually - but mostly it happens when I'm tired, not all the time).

The most annoying is probably the tremor. I have trouble with everything from threading a needle and putting on eyeliner (nail polish is all but impossible) to using a knife and I think it affects my typing. The good thing about the essential tremor is that it goes away with a little alchol consumption! :) Not that I need any new reasons to drink, LOL!

Also, it super annoys me that when I reach for something with my right hand, say a cupboard handle, I tend to hit slightly away from the handle like an inch above it. Oh ya, and the MS medication they gave me (which costs pharmacare apparently more than $2,000 per month) causes me to go beet red and ichy all over sometimes; the stomach issues it caused mostly passed. But it seems to be working so there's no way I'd stop taking it for going ichy and red or having to take Pepto Bismal sometimes.

I was just reminded of one more - clumsiness. Annoying.

Ok so that's why I've been away for a while. I'm back in the Lower Mainland (Surrey) and go to the UBC MS clinic regularly. I'm super grateful to be in the city health care system. I love so many things about the Kootenays, I miss the snow, but not the lacking health care... and the shitty internet service.

I do try to stay positive. They doctors say it can take at least 2 years for a brain injury like I have to heal. As of December 2014 it was still growing/in flux so I have some time till I hit the 2 year mark. I am getting better (I really think the medication works but I'm also trying to live more heathily and have almost give up chemical bathroom cleaners and non-organic hand lotion - as the MS clinic suggested). I know for sure now that I need to listen to my body - though try as I might... it's not an every day success.

I do believe in neuroplasticity. People recover from strokes and other brain injuries. There is the guy with half a brain who seems to do fine.Perhaps there is hope for me yet, jk.

Background photo by Breeze Ward