Tag Archives | gratitude

250th Post! My AVM Story: Wishes and Choices

So, this is my 250th post! Do bloggers generally celebrate 250 posts? It seems worthy of celebration to me.wishes and dreams

And it seems like a long time since I’ve posted about anything positive. So I’m going to post an essay that I wrote, in 2006: “Wishes and Choices”. It’s about how I was feeling about my recovery process at the time.

“Wishes and Choices” is still true…mostly. I’m a less little naive now. I no longer believe that everything happens for a reason, but, to quote Tom Lehrer: “Life is like a sewer: What you get out of it depends on what you put into it.” I’m much more accutely aware now, however (not only because of my experiences but because of many, many discussions with others much smarter than I, not to mention hours and hours of having CNN on in the background in my apartment) that “stuck” isn’t always a state of mind, that “staying positive” isn’t as easy as everyone makes it sound, and that sometimes even working your hardest just isn’t enough…particularly for groups existing in a social system that’s stacked against them in multiple ways.

I’ve grown up a bit since I wrote “Wishes and Choices”. I hope I’m a bit wiser…and that my writing has improved at least a little bit!!

But my main impetus for writing “Wishes and Choices”. hasn’t changed. As hard as it’s been to get here since the stroke, I wouldn’t change what happened. It got me here, to my 250th post, didn’t it?

And I like being here. :) Thank you all for being here with me.

(Oh, if I ever reprint “Wishes and Choices” anywhere else, I’ll find some way to say what I want to say without using “inner voice”.  A promise to an editor friend.)

Wishes and Choices

I’ve always believed that things happen for a reason. Even “bad” things.

So, one day at Penetanguishene Rehabilitation Hospital, I declared to the social worker that if I had to do everything over again, I wouldn’t change a thing. I’d have the surgery, definitely. I’d have the stroke. Definitely.

Well, that’s more written on stone on some days than others.

Some days I can’t help thinking that it would be nice to have three wishes to put towards restoring my health. Or even one wish.

I’d have to phrase my one wish very carefully.

Should I wish to be healthy again? All things considered, I am fairly healthy. The arteriovenous malformation is no longer a problem. My seizures are more a nuisance than a health risk. Despite my weak left side, I’m actually more physically fit than I was before the stroke.

Should I wish not to have a weak left side? That still leaves me with a seizure disorder, which makes me unable to drive.  Losing that freedom has affected me, in many ways, more than the weak side. Not being able to drive is a huge hassle, especially living in a rural area.

Should I wish that I hadn’t had the surgery? That would leave me with an AVM in my head, making me a ticking time bomb. I would have almost certainly had at least one other bleed, possibly causing the same neurological damage as the post-surgery stroke did.

I should maybe wish that there had been no complications after the surgery. That would be the wish, I think…no stroke to cause a weak left side, no scar tissue to cause the seizure disorder. Brain surgery seems scary, but is more routine than people think. When it goes well (which is most of the time) people aren’t even in the hospital all that long. With a routine surgery, I could have gone home in a week or so, recovered for another three, possibly been back to work by July. Life would have gone on.


Would I have met some of the strongest, gentlest, funniest, most loving, resilient, intelligent, determined and courageous people I could ever imagine?

Would I have the immense respect that I now do I for nurses (and the medical system in general), co-existing with the knowledge that sometimes I must speak with a firm voice and gently insist that I be listened to if I’m to receive the best that it has to offer?

Would I know how fun it is to run over bubble wrap in a wheelchair, or that you can tow at least two manual wheelchairs (with people in them) behind an electric one?

Would I appreciate how hard life can be for people with disabilities to live in a society in which it can be very difficult to manuouevre, both physically and emotionally?

Would I know in my bones that more people care about me than I can count, and finally be able to see how immersed in love I really am?

“Stay positive.” “Work hard for what you want.” “It’s what’s inside that counts.” Would these cliches have become part of my life philosophy?

Would I know how and when to ask for help, and feel comfortable doing so?

Would I know that just because life turns out differently than you expected doesn’t mean that it’s necessarily going to be worse?

Perhaps I would have learned all these things somehow if I hadn’t have had the stroke. Perhaps these were lessons I needed to learn, and acquiring a weak left side was just one way of getting there. Perhaps if the surgery had gone absolutely according to plan, I’d still be right here at age 29, writing a touchy-feely and somewhat vague reflection on how one wish could change my life.

Since I’ll never know whether different life circumstances would have taught me what I know now, brought me to this place where I am…perhaps I’ll just leave it at this:

I don’t need a wish. I have too many choices to fill my head with wishes.

I choose to hope.

I choose to find new ways of looking at the world.

I choose to be open to the connectedness between us all, to heal and be healed.

I choose to passionately pursue the things that give my life meaning.

I choose to celebrate the victories.

I choose to relax into my failings, and to try again.

I choose to stop, rest, and listen patiently and compassionately to my inner voice.

I choose to stop trying to control everything.

I choose to believe that “stuck” is just a state of mind.

I choose to not to let people handicap me.

I choose to let myself feel what I need to, when I need to feel it, and to ask for help when things get too hard.

I choose to let my mind and spirit run fast and free.

I believe…and I insist…that I don’t need a fully functional body to do any of these things.

I don’t wish. I choose.

Have a great weekend. You’re all awesome. :)

(Oh!  I’ve got a new web presence…check me out here: http://topfemaleexecutives.com/Sarah-Levis)

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My Brain AVM Story: I Worry

I worry about a lot of people in my life.grateful

I worry about my dad. His health is fairly good right now, but he lives on his own, and I worry about him getting lonely, or falling and hurting himself.

I worry about my sister and my brother-in-law and if they’re doing okay as new parents. I worry about whether they have everything they need, and if they’re adjusting okay to what I’m sure what must be a lot of new challenges (they appear to be doing very well, but I’m sure that with a new baby, a dog, and a cat, they have their “moments”.) I changed my first diaper by myself over the week-end. Although it was less difficult with one hand than I thought it would be (fortunately for me, my niece loves being on the change table and didn’t see to mind me tugging the clean diaper around underneath her to get it properly placed) I have no idea how especially single parents deal with everything involved in taking care of a baby.

I worry about friends that I know have a lot going on in their in their lives. Some live close, some live very far away. Most of the time there’s not a lot I can do for either group of friends but be a listening ear (which makes me feel very helpless, and I’ve never liked feeling that way…it frustrates me).

After living on my own for so long, I’ve learned to deal with most of my health stuff by myself – my seizures (when I was having them), my migraines, my rare dizzy spells from Dilantin toxicity, the very rare time when I get sick and throw up. Lately, for some reason (I’m thinking a combination of chronic stress and perhaps a recent medication change), I’ve not been feeling as well as I’d like. And I’ve realized that it’s difficult to admit to people that I don’t feel well. I’ve  had so much invested in so long in being “okay”, so that people don’t associate any “not okay” with my disability and treat me differently, that I have literally forgotten how alarming it can sound to people when I say, “I had a little double vision today, so I took a nap,” or “I was dizzy today, so I took a day off from writing,”

I don’t like it when people worry about me. But sometimes, just like everyone else, I need a little TLC when I’m not feeling well. I’m learning that it’s okay to ask people for that. I’m learning that it’s okay to call my Dad and ask him to bring me some ginger ale when I’m not feeling well, just the way that I would gladly do for him if our situations were reversed.  Because he worries when I’m sick, and he wants to help.

I think what brought this all up was that when I went to see my sister and her family this weekend, she’d bought me a bag of groceries. There had been a major sale on at the grocery store at which she shops, apparently, and she’d filled a bag for me of things that she not only knew that I use every day (peanut butter, Lysol wipes for when the cats jump on the counters and tables) but also stuff that she knows I like but don’t buy right now because they’re just too expensive: Nutrigrain bars, my favourite crackers, cookies that I like, SnackPaks…

And it made me almost cry, because it made me realize that my sister worries too, and wants to help how she can.

And there was a message on the answering machine that night from a friend that I know worries, and called to find out if I was okay if I was okay after my day.

I worry about a lot of people. A lot of people worry about me, because they care. And I’m very grateful for all of them.


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Happy Thanksgiving

So today is Canadian Thanksgiving…and with that in mind, here are some things that I’m thankfulthanksgiving for:

1. I’ve got all my basic needs met: food, water, a place to live, affordable medical care, etc.

2. I’ve got a wonderful, supportive family…including my beautiful niece, Gillian, who is celebrating her first Thanksgiving today.

3. Even though I haven’t got a job, I’m actually doing a lot of what I love right now – writing. And I’m taking steps every day toward turning that into a job.

4. I live in a community that, over and over again, has shown itself to be full of friends, sometimes when I least expect it and most need it.

5. I have friends all over the world. That’s a really cool feeling.

6. I live in a country that values peace-keeping, human rights and taking care of its vulnerable citizens.

7. I’m much more than my disabilities.

8. “The Big Bang Theory” is on every night now. :)

Happy Thanksgiving, Canada.



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My AVM Story: Counting My Blessings

Not Good with Pain!

For almost three weeks now, I’ve a toothache.

It started off as a twinge, and then, the Wednesday night before last, all hell broke loose. I didn’t know that teeth could cause that kind of pain. I took the post-stroke painextra strength generic ibuprofen that I had in the house, but it didn’t make a dent in it. I cried. I called a friend to distract me. I called my dentist the next morning, but he couldn’t see me until Monday.

I lasted until Saturday night before I went to the ER looking for meds.  They gave me *lovely sigh* something with codeine in it.  Which worked wonderfully, but made me feel like I was going to have a seizure every time I took it. My conversation with my dental hygienist on Monday, however, shows how much I value good pain relief:

Me:  The codeine that they they gave me at the hospital makes me feel like I’m going to have a seizure, so I’ve been a bit unsteady.

Jessica: Seizure!  No more codeine for you!  He’ll write you a prescription for something without codeine for you.

Me: (Pause) But the codeine works *so* well…

My dentist established that I need a root canal and prescribed me something called Naproxen (which doesn’t work as well as the stuff with codeine in it, but I’ve survived). But all of this has made me think about how I would have handled my health issues if I’d had to deal with pain on top of everything.

So What if There *Had* Been Pain?

The first stroke, the one that I had in British Columbia, came with a terrible headache, and pain that started in my neck and moved down my body.  The initial pain was definitely the worst in my head that I’d ever experienced, and the worst generally that I could remember. It took two weeks before both kinds of pain completely went away. Apart from that, and some severe headaches right after the brain surgery (which one would expect), I haven’t experienced any pain. Sometimes one of plusses of stroke is that you don’t experience pain. I fell on my left hand two years ago, went to the hospital for X-rays a couple of days later because my thumb hurt, and found out that I’d broken my little finger and didn’t realize it

(As you can imagine, having that little sensation in a finger or limb can also be very dangerous. I’ve heard horror stories about people with very little sensation in their affected hand or limb setting it down on a hot burner, or cutting it badly, and not realizing it until some other signal of skin damage made it obvious. Because people are less aware of a side that’s been affected by stroke, they tend to “neglect” it, or not pay attention to things like where a limb ends up resting.)

But I digress.  My stokes didn’t inherently cause any long-term pain, and I didn’t realize until much later that I’d dodged a bullet.  A young man named Martin showed me how much worse it could have been.

Post-Stroke Pain

Martin was also a stroke survivor.  Just a bit older than me, he’d had a stroke after being in a terrible car accident. Among many other health issues unrelated to the stroke, he had something called “post-stroke pain”, or “neurogenic pain”. The brain damage caused by his particular stroke caused his brain to feel pain when there was nothing there to cause it. He didn’t talk about it much, but he once told me that it was excruciating. His mother told me later his post-stroke pain felt like his fingernails were being ripped out for several hours a day, every day.

I don’t know how I would deal with that now. I certainly don’t know how I would have dealt with it as I was earlier stages in recovery.

Counting My Blessings

I know for sure that I would have found it much, much more difficult to stay positive and to get on with the work of recovery if I’d been dealing with any sort of chronic physical pain. Emotional pain – I can work around that (well, up to a point, but it’s got to be pretty intense before it interferes with my functioning). It’s been my experience that physical pain gets much more in-your-face much more quickly, and I’ve got no end of admiration for people who seem to thrive in spite of it.

I know that I couldn’t do it.

So I count my blessings. A lot of people out there have got it a lot worse than I ever did.

For more information about post-stroke pain:  http://www.emiliemcmahon.ca/englishmrp.html

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My Brain AVM Story: The Stroke

I don’t remember waking up and thinking, “I can’t move my left side”. For a long time, I thought that the stroke occurred while I was on the operating table. It was a couple of years later before I realized that it actually took place several days later, and not in the area where the residual AVM was. There was a seizure involved (which I do remember), and then a gradual realization that there were parts of my body that just didn’t move right anymore.

A Brain That Doesn’t Realize Parts of the Body are There

“Trying to lift a limb affected by stroke is like trying to lift a sleeping cat,” said one of my nurses. That meant nothing to me at the time because my family had only had dogs for pets and I’d never tried to lift a sleeping cat. (I have now, which gives me an even greater respect for the nurses who literally had to move my limbs for me to get me dressed and undressed each day). All I knew was that I felt like my left side was dead; my brain didn’t realize that my left arm and leg were there.  I tried to think with all my might, to get more than a little bit of movement out of my left arm, leg, foot or hand, but none of them wanted to cooperate. My leg would only rise a couple of inches of inches off the bed, and stop. My foot pointed a little bit, but my toes wouldn’t wiggle. I couldn’t pick anything up; my fingers made a loose fist, but my thumb lay flush across my palm and refused to move. I came to a great appreciation very quickly of just how much I needed my thumb to do just about anything. However, I was determined that the stroke wasn’t going to prevent me from returning to my summer job in July.

Dealing with the Stroke Brain

I don’t remember how I managed to eat, not being at all ambidextrous (well, truthfully, I hated the hospital food, and only ate and drank enough so that they’d keep a catheter out of me). I imagine that the things that I do now (open cracker packages with my teeth; saw my food with my knife; I now make a standard disclaimer to new friends that dining with me isn’t always a graceful affair) were already done for me. My signature became acceptable, but I eventually sent my looseleaf notebook and pens home with my father. I was not going to be doing any real writing for a while.

Physiotherapists would come and do basic range of motion exercises with me, and help to get in and out of a chair so that I could spend a couple of hours out of bed each day. Even doing that was exhausting. I spent my days mostly sleeping and reading the magazines that my father brought me (“There’s nothing worse than not having something to read,” he’d say to me as he’d deposit the latest issues of “People”, “US”, and “Entertainment Weekly” on my bedside table.)

He also brought me the latest “Harry Potter” book right after my stroke. There was no reason to believe that I couldn’t handle it. We’d established that the stroke hadn’t damaged the “machinery” in my head that would make life *really* difficult to live. I could swallow, so my food didn’t have to be pureed (and when I saw the pureed diet in the rehab hospitals, I thanked my lucky stars for that!) I could talk, and I didn’t appear to be experiencing deficits in my speech. My vision didn’t appear to be impaired, although I’d have to have further testing on my visual field done.

The Scare of My Life

However, when I started to read the “Harry Potter” book, I was stunned and terrified. I found that, while I had no problem reading and understanding the lines of text, I couldn’t link them together. I felt like each time my eyes dropped to the next line, I had skipped a line and jumped out of place in the paragraph. But there was no way to find the line that fit, because I *was* reading the line that was supposed to fit; my mind just didn’t recognize it.

My father was in the room with me. I started to cry. “I can’t read,” I said. “The lines don’t make sense.”

“What?” he said.

“This line doesn’t come after this one,” I said, pointing to a paragraph in the book. “My mind doesn’t understand it.”

I’m sure my father had no idea what I was trying to say, but he got a nurse in there and between the two of them they got me to accept that this could just be a temporary side effect of the surgery (which it was). I just had to be patient and take it easy and do the best that I could.

Which would become the theme of the next several years.

If there’s anything truly fortunate about the way things went with my AVM, it’s that I found out about it by having a small stroke that caused no damage. Yes, ultimately I had a larger stroke that caused significant damage; but if I hadn’t had that smaller, warning stroke, the same thing (or worse) could have come from seemingly nowhere in a situation where other people might have been hurt (like, when I was driving a car or holding a baby). This way, I chose to go into surgery knowing that something like this could happen…and at least I won’t have another stroke from an AVM. I rolled the dice on a surgery with risks…this is what I got. And all things considered, I came out pretty good. Plenty of people have come out of the same surgery in a lot worse shape.

So I try to remember to count my blessings. More on that later.

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