Tag Archives | rehabilitation

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.

But.

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 AVM Story: Little Springs

I admit it. I’m still celebrating spring.  It may be snowing on parts of the West Coast, but (for the moment) it feels like summer here.Curves gym

This is an essay from my 2006 book, “Run, Run Because You Can” about winter, spring, and recovery. Happy Friday!

Little Springs

Winter is long. It feels longer.

The snow blows long and hard, and sometimes freezing rain upgrades the walking conditions on the sidewalks from “somewhat dangerous” to “treacherous”.  For a person like me, who for a long time after the stroke relied on walking as my only form of cardiovascular activity, winter seemed the kiss of death to anything resembling an active lifestyle.  And as my weight continued to creep up and up, while my body got more and more able to move and stay upright on its own, I began to get restless.

A number of women I knew in the community had joined a Curves gym.  I had seen commercials for the US-based chain on television, and knew it was an all-female gym.  Members did a circuit of alternating cardiovascular activity and hydraulic strength training on machines in 30-second intervals for half an hour.  I asked around about the Curves gym, heard nothing but glowing reports, and was given a guest pass by a friend.

I didn’t think that I’d be able to get in and out of those machines that I’d seen on the commercials for Curves Gym, but I figured that even going in and doing some sort of cardio would be beneficial.  So I went in to the Curves gym in my community and talked to the owners, Kelly and Heather. Kelly took me through the gym, cane and all, patiently helping me in and out of (almost) all the machines to show me how they worked, while the other ladies who were working out smiled and just moved around me if they had to.  Kelly suggested that I avoid only two of the machines at first, for safety reasons, but was confident that I’d use them eventually.  She didn’t seem daunted at all by my medical history.  She merely suggested that I work out with supervision for a while to be sure that I didn’t fall, and even gave me a free month to see if the Curves gym was going to meet my somewhat specialized needs.

I went two times a week for a month, and joined.

Being able to move like that again, to swing my arms and move my feet to music and use the rhythm of the machines to make my arms and legs strong again, was one of the best things that anyone could have given me at that point in my recovery.  It wasn’t long before I was exercising without supervision, and even using one of the machines that Kelly had originally suggested that I hold off on.

Kelly and Heather had told me not to necessarily expect any benefit in terms of physiotherapy from my exercise at the Curves gym, but I saw them; my strengthened muscles made me faster, steadier, and that in turn made me move with more confidence.  And for the first time in my life I was becoming physically fit – even more so than I was before the stroke.

But there was still that one machine that I couldn’t use. I just didn’t have the physical dexterity to get into it, and my weak foot would not stay in proper position once I was there.  So I skipped the machine, doing extra reps on other leg machines to compensate.  It was a matter of acceptance – just as there are some days in the winter when the sidewalks are simply too dangerous for walking (for me, at least), there was a machine at the Curves gym that it wasn’t really safe for me to use.  No big deal.

However, one April day, Kelly came out of her office and looked at me thoughtfully.  “You wanna try the leg press today?” she asked.

“I don’t think I can get into it,” I said.

“I’ve been watching you, I think you can,” she said.  “Come on, I’ll walk you through it.”

And she did.  And I did, beating ten months the two years that she and Heather had expected me to take to conquer all the machines.

Curves gym was giving out that day, of all things, packets of wildflower seeds.  It was Spring, but still too early to plant anything outside, so Kelly suggested we plant in the seeds window boxes for now and move them outside later.  On the way home I stopped at the hardware store and bought medium-sized clay pots and a tiny bag of potting soil.  I just about put my back out lugging my purchases up the hill to my apartment.  But it was worth it to sit on my floor, hands in the soil and gratitude in my heart, celebrating all the little Springs in my life.

More about Curves gym:  http://www.curves.com/

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The Trick of One-Handed Living

I’ve mentioned previously that I have very little function in my left hand.  I also one-handedlive alone. When you live alone, and you have to live one-handed, you have to get creative. If you’re curious, try doing your morning routine one-handed:

  • Shower, teeth-brushing, styling your hair (I don’t shave my face, of course, so the guys will have to tell me how that goes.)
  • Dressing (including putting on your bra, ladies.).
  • Making breakfast. Try something simple, but throw in a little trick like cutting up a banana for your cereal or spreading some peanut butter on your toast.
  • Putting on shoes with laces. Try this even if you don’t intend to wear them.

Every Problem Has a Solution…Even One-Handed Living Problems

I don’t suggest that you do any of this as a “See how hard Sarah has it” exercise. I don’t have it that hard. The thing is, I’ve found ways to get around most of these challenges, to the point where I manage my life one-handed without even really thinking about it anymore. I have an adapted cutting board and a special knife to help with cutting up food. My sneakers have stretchy shoelaces in them that don’t require tying.  I figured out a way fairly early in physical rehabilitation to put my bra on one-handed so that I wouldn’t have to wear a sports bras all the time (email me if you want to know, ladies).

And for the stuff for which there isn’t a tool or an established trick – I figured something out. Because when you live alone, if you don’t find a way to do something, and you’re as stubborn about asking for help as I am, it doesn’t get done.  I’m not always successful on the first try, it’s not always graceful or pretty (I’m sure that getting the cat into the carrier last week to get her to the vet was…as painful-looking as it actually was). Yes, there are some things that I simply can’t manage one-handed- but you’d be surprised at what I’ve found ways to do.

I’m not special. You’d do the same thing.

Hope for My Hair

One thing that’s been very difficult for me to manage one-handed from the moment I had the stroke is my hair. I had long hair when I went into the hospital for surgery. I came out with shorter hair. It’s been very short sometimes, but I always end up missing my long hair too much, so I grow it out again – so it can sit limp on my shoulders, because you really need two hands to do just about anything with long hair. I’ve figured out how to put it up in a clip when it’s long enough, but I miss being able to put it in even a simple ponytail.

Which is why I was thrilled to find this video yesterday:

Talk about creativity and problem-solving! I might have just enough function in my left hand to manage it…looks like I may be practicing putting my hair in a ponytail in my spare time.

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Me and My Cane

I Love My Cane

We are an excellent team. I’ve never seen footage of myself walking with my cane, but I feel like I move smoothly and freely. I don’t even notice my cane anymore as I walk. It just feels like an extension of my arm, helping to make walking a bit easiercane for me. It feels to me like a beautiful friendship.

If my cane were a person, however, you could make an argument that I’m not much of a friend.

Outdoors Friends

When I was in outpatient rehabilitation from my stroke and getting mobile enough to spend more of my time out of my wheelchair, I used my cane all the time, inside and outside. Now I don’t use a wheelchair at all and I only use my cane when I’m outside, for added speed and balance. If I’m going to be in a building for any length of time, I hook it over a chair or set it against something, and don’t think it about it until I’m ready to go outside again.

Friends don’t just associate with friends when they need them for something and then set them aside until the next they need something. My poor cane. Despite the fact that it gets me where I’m going so much more easily when I’m outside, that it does increase my balance and speed, and that it’s stopped me from falling more than a few times, it basically gets ignored when I’m indoors (except when my father plays with it, which just annoys me). In my last job, one of the individuals that I supported always took note of where I put it down when I came into the office, because he knew that I’d forget where I put it when I went to leave. As I left, he’d bring it to me and I’d thank him, embarrassed. I’ve left my cane hooked on grocery carts, on chairs in food courts,  on clothing racks in stores, and on windowsills, ledges, counters or tables in just about any other building that you can imagine. All with no apology.

If my cane were a person, maybe someone would say to it, “It doesn’t sound like Sarah is much of a friend. Maybe you should just cut her loose.”

Growing Apart?

But if my cane was a person, I think that it would understand that me forgetting it is really a good thing. If I can walk away from it more and more easily, that means that I’m needing less and less. That means that after over a decade of being a stroke survivor, I’m still getting better.  And a friend would celebrate that for me, plus look forward to the prospect of eventually totally retiring.

It’s not like I’ll ever forget how fortunate I am to live in a country where my mobility aid was affordable and easy to get. It’s not like I’ll ever forget a dozen years of walking with the extension of my arm.

My friend has offered to dress up my cane a bit – put some colour over that generic grey and silver that I’ve left untouched for so long. Perhaps it’s something to consider. Something nice to do for my friend.

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My Brain AVM Story: Michael

This is another essay from my book “Run, Run Because You Can”. It’s a little long, but it’s a reader favourite. I hope that you enjoy it.

Michael

Some people that I met during in-patient rehabilitation were part of  my  post-stroke life for only a very brief time, but impacted me greatly. Michael was one of them.  He came to Penetanguishene General about six weeks into my stay. He’d also had a stroke that had affected his dominant side.

Michael was in his sixties. I didn’t hear him speak for several days after he arrived.  His wife was with him whenever possible, and for the first couple of days I mistook his quiet for terror.  He actually couldn’t speak, as his stroke had severely affected his speech as well as his mobility. I was again reminded to count my blessings.

Due to the nature of Michael’s stroke, his recovery process moved much faster than mine. However, it also worked in his favour that he worked even harder at rehabilitation than I did (andbrain avm I was working pretty damn hard). He had the best attitude that I saw in anyone, in all my time in rehabilitation. Before long, he could give one-word responses to questions such as “How are you?” (to which he always gave an emphatic “Excellent!”). He was soon talking in short, halting sentences when his wife came to the hospital to have dinner with him. He did his physiotherapy and occupational therapy exercises diligently and without complaint. When the physiotherapists gave him the “okay” to walk short distances with a cane, he would practice even after daily therapy hours were over, until the nurses would make him stop. His determination renewed mine, and made me want to work even harder than I was.

Kindred Spirits

Sometimes we were in the Occupational Therapy room at the same time.  He did worksheets while I did my arm exercises. One day, another patient was complaining that Jim, one of the physiotherapists, was in a terrible mood. I was struck (not for the first time) that someone was always complaining about something on that floor, and I tried to hide my annoyance.

“He’s probably just having a rough morning,” I sighed as I did a set of reps with the eight-pound weights, using my right wrist. Part of my therapy was to strengthen my right arm in preparation for making it my dominant arm. Being able to lift eight pounds with your wrist is pretty good. Normally, I’d have been very proud to be able to do that. However, it just didn’t seem very impressive that morning.

brain avm“Jim’s. Hung. Over.” said Michael, and winked at me.  Due to his speech difficulties, when he spoke, he had to pause between each word for a short period. That time it didn’t even register; the words were so unexpected and yet so perfectly timed that I’d started to giggle before I could stop myself.

Once I started giggling, I couldn’t stop.  The morning suddenly looked a little less gloomy. Ellen, the occupational therapist, looked over at me to see what so funny, but I couldn’t explain myself, and I didn’t really feel like it anyway. When I looked over at Michael, he was grinning, and I thought, I like this guy.

Another time, as I laboured to stack cups using my left hand, Michael started looking to me for help with his memory worksheet. He was stuck on a grammar exercise.  Thinking back to how difficult it was for him to retrieve words, and how he sometimes got different elements of speech mixed up, I am so grateful that most of the machinery for that sort of thing is on the opposite side of my head from where I bled.

“Take. This….” he read from the sheet. He was to supply a noun.

“Take this…” I wrinkled up my face, hoping that maybe if I thought hard enough, my hand would work and I could stack the plastic cups effortlessly.

“Take. This. And. Shove. It.” said Michael.

I nodded. He’d pretty much summed it up. I suddenly felt a kinship with Michael, perhaps just based on a mutual frustration (and perhaps boredom) with occupational therapy exercises, but a kinship nonetheless. A little while later, during our one, real conversation, I realized that there was perhaps a deeper bond of understanding behind it.

“I. Love. My. Life.

We were both sitting on the porch between physiotherapy sessions. The other people with whom we’d been talking had gone back inside. We were sitting out in our wheelchairs in comfortable silence, enjoying the sunny day. PGH was a nice hospital, on a scenic piece of property. I could almost believe that I was out in the country when I looked off the porch at the surrounding trees.

At length, I started asking Michael about his life outside the hospital. He talked, in his slow, halting speech, about his wife (who still came daily to have dinner with him), his children, and his grandchildren. He talked about how worked in a bank for most of his career, and about how much he now enjoyed doing things outside now that he was retired from his job. He particularly enjoyed snowmobiling.

After a while, he became silent. He stopped looking at me and appeared to be biting his lip.  It took me a moment to realize that he was trying not to cry. I suddenly felt very, very badly. I’d only been trying to make conversation, but obviously I’d hit a nerve. I knew which one was it was, too. When hit it the right way, it was a sharp, stinging reminder that just a little bit of blood where it shouldn’t be could turn your world upside down and change it forever.

“I. Love. My. Life.” he said softly.  “I. Love. My. Life.”

Yes, I said to myself, looking at my hands.

He quickly turned his wheelchair away from the railing and started to roll towards the door. Halfway there, he broke down and started to sob.

My heart was breaking. I rolled toward him in my chair, absolutely clueless as to what I was going to say or do, but feeling like I needed to do something to let him know that I understood. I had my hand reached out to put it on his shoulder, but as I got close to him, he grabbed my hand and brain avmsqueezed like he was never going to let go.

In that instant, I felt as if I’d found my rehab soulmate. I felt like someone understood how hard it was to get up every day and be positive, work very hard and just be generally “excellent” when there seems to little to feel good about.

One of the hardest parts of rehabilitation was that I just didn’t know what was going to happen. I had to go put as much into process as I could, with no guarantee of how much of my old life I was going to get back. It was exhausting and terrifying…and up until that moment, I’d been feeling very alone in those feelings, despite being surrounded by support.

All this passed through my mind in an instant, as did the sudden certainty that I was not alone in these uncomfortable feelings. To know this so deeply brought tears to my own eyes.

Michael only held my hand a couple of seconds, and said nothing. He then let go, wiped his eyes, and wheeled towards the door to go in for lunch. I might have met up with him a couple more times in occupational therapy after that, but we never spoke of that day on that porch, and it wasn’t long before he was walking out of the hospital with his wife for good.

Sometimes, when I see people snowmobiling, I wonder if he’s out on the trails. I like to think that he is.

 

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My Brain AVM Story: Leaving Ottawa

I was in Ottawa today, and it brought back a lot of memories. It’s almost 11 years ago to the ottawaday that I walked out of the Ottawa Rehabilitation Centre after being in hospitals since the end of May. I’d be going home for good.

Ottawa, December 21, 2000

My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing’s notes, and the nurse who’d thrown me under the bus (as far as I was concerned) didn’t get to speak. It was a win-win for me, really. The whole sordid story behind that is here:  http://www.girlwiththecane.com/brain-avm-4/

All of us on the unit were leaving that day, because the unit was closed over Christmas. Some people would be returning in the new year for more inpatient therapy, or for outpatient therapy. I wouldn’t be, so I said good-bye to all my friends: Nick and Angela, and Helene, and Alison, and Katie. Some of them I’d see again. Angela and I spent a week together at her home in Ottawa in the next year, and I saw Katie a few times when I went to Kingston to visit my sister. The others slipped off my radar. I’ve tried to find some of them through the Internet, and haven’t been able to. Angela kept in touch with some of them, as she went to ORC for outpatient therapy. But some even she lost touch with some of them. Perhaps they wanted to forget that time in their lives.

I said good-bye to all my physiotherapists and occupational therapists, and my social worker and my psychologist, and the doctor that oversaw my team. I was nervous. The hospitals were friendly places for disabled people. The buildings were accessible and people were okay with me moving slowly and I knew that if I had a seizure I was surrounded by people who knew what to do. I knew that the “real world” wasn’t always like that.

Good-Bye Ottawa Rehabilitation Centre

I walked into ORC using a cane. I was shaky and I didn’t get very far before I needed to use my wheelchair, but I walked in. I was a lot less shaky when I walked out, but my wheelchair was right behind me. I needed to use it when Dad took me to the mall so that I could do my Christmas shopping before we left town.

Today, nearly twelve years later, I did my Christmas shopping without a wheelchair. I walked into McDonald’s without my cane, in fact. We don’t need a disabled parking placard for Dad’s car anymore because I simply don’t qualify for one.

It’s taken a lot of hard work, and I know that there’s still hard work to come. But things are very different than that day that I walked out of Ottawa Rehabilitation Centre, and that really struck me today.

I think I needed to remember that today – that I’ve faced challenges before and worked hard and gotten to a good place, and that I can do it again.

What reminds you that you can get through the tough times, when you need that bit of encouragement?

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My AVM Story: My Hand

Every now and then someone asks me if I can expect any further improvement in my left hand. Myhand standard answer is that I don’t believe that I’ll ever be back to 100% of what I was.

However, my left hand still slowly improves. In a stroke like mine, any improvement after five years is fairly remarkable, and it’s now been well over ten years. So any improvement at this point, no matter how small, is really something to feel good about.

If You’re Going to Have a Stroke, Do it When You’re Young

Having a large stroke at 22 has its advantages (as opposed to having a stroke later in life). I had no other health issues (besides healing from the brain surgery, and the seizures the came from some scar tissue). My body was young and strong.

Most importantly, my brain was young and therefore still high in plasticity. Brain plasticity is a big plus when you’re healing from a stroke, because it means that parts of your brain can actually take over for other parts that are damaged. As your brain gets older, it loses plasticity.

Is it brain plasticity that’s recently allowed me to start wrapping my left hand around the door handles on Dad’s car when I couldn’t before? I don’t know. But a year ago I would have had to use my right hand to move my thumb to grip something like, and I don’t have to anymore.

Too Good at Living with One Hand

I’m actually starting to pick up some relatively narrow objects with my left hand, like my remote control, but not because my thumb wraps easily around them – it moves just enough to act like a shelf, still lying practically lying flush across my hand. Using my left hand too much makes it slowly clench into a fist.

I need to take responsibility for it not being further along than it is. I should be using it more – not go back to those incredibly frustrating hours in occupational therapy where they’d put mt right hand in a glove and and then make me do up buttons with my left hand for an hour, but just make a more concentrated effort to actually *use* my left hand during the day. After over 10 years of living one-handed, I manage pretty well, and it’s just become must easier to use my right hand to get something done than deal with the frustration of trying to do it with my left.

So What’s the Problem?

It begs the question of why I’d even try to get more function in my left hand, if I can manage with just my right. Well, there are things that I’m *always* going to need two things to do. I’m really limited when it comes to lifting some things, including my new baby niece. Sometimes jars are a challenge. It’d be really nice to have two hands to go on the wheel once I start driving again (my grip in my left hand is strong to begin with, but doesn’t stay that way).

It may be time to start occupational therapy on my hand again, to learn how to use it more in everyday life *with* my right hand…

Things to think about, as I plan my next steps…

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My Brain AVM Story: “Confront Me If I Don’t Ask For Help”

The title of this post is from a movie called “28 Days”. Sandra Bullock, sentenced to 28 days in an alcohol rehabilitation centre after causing a car accident at her sister’s wedding, is forced to wear a sign saying “Confront Me if I Don’t Ask for Help” on a sign around her neck as penance for breaking the rules. There were days after my brain AVM surgery and the stroke when I probably should have worn a similar sign.

I had a very hard time learning to ask for help after the stroke. And an even harder time learning to accept it.

“I’m Fine. Thank You, Though.”

The word “help” hadn’t come easily for me for a long time. I’d always been fairly private about my affairs, and I’d already lived on my own for a year in university before moving out to BC. I was used to making my own decisions and coming up with my own plans for handling my problems. However, after my brain AVM surgery and stroke, for a couple of years, I was much more dependent on people than I liked. I didn’t have a driver’s license anymore, and in my small town there was no public transportation, so I was basically reliant on my father or taxis for transportation. I got tired extremely quickly, and had trouble doing even the most basic things without assistance. We won’t even get into the limitations imposed on me when I used my wheelchair in public.

When I was recovered enough to move out on my own, I was close enough to town to walk when the weather was nice and the sidewalks were clear (in winter, snow and ice still sometimes make walking unsafe for me). However, even on good walking days, I usually take a cab if I’ve been shopping and have groceries to carry. I can carry a week’s worth of groceries in plastic bags with the handles over my wrist on my good arm, roll a 12-can case of pop up my body and carry it under my elbow on my weak arm, and still get into my apartment, but I can’t pull that off for any sort of distance; sometimes walking home is out of the question.

Watching me carry that many groceries even the short distance from the cab to my apartment building makes the cab drivers, who all know me by now, awfully nervous. So much so that some of them, while they respected my refusal of their offer to help for a while, don’t listen anymore; they’re up and grabbing my bags before I have a chance to object. (Note: There are *very* few people from whom I’ll put up with that sort of thing. There’s only one cab company in town and the drivers see me enough to know when I say, “I’m fine, I just need to get organized” as I drop three things on the ground, I’m probably just brave-facing it and bull-shitting them a bit…so some of them just stopped paying attention to me. It’s actually kind of refreshing when people are willing to call me on unreasonable behaviour in this way.)

“She *Can* be Taught!”

So…it’s taken me a long time to learn that asking for help, or accepting help when it’s offered, is not a sign of weakness or dependency. One of my friends brain avm   says, when I’ve gotten too  stubborn about doing things  “on my own”: “I *know* that  you’re fine doing it by  yourself. But won’t it be easier  if you just let me help?” I think  it’s to my credit that I snarl at  them a little less than I used to  after hearing that.

Nick (name changed) was actually the first  person who brought this issue  up with me. We’d both been  away from Ottawa Rehab Centre for the weekend for visits with family, and we’d both gone to the Chapters book store in the area. I talked about how I’d tried really hard to do as much as I could on my own, even though it was harder to reach the higher shelves in my wheelchair. Nick said had shrugged and said that he’d asked for help when he needed it, and had much more energy to enjoy the book and the time with his family.

Man, I hated it when Nick was right.

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My Brain AVM Story: Dark Humour

I mentioned elsewhere how my sense of humour is kind of dark. I come by that honestly, and it came in handy when I was in stroke rehabilitation, after my brain AVM surgery.

All names are changed in this entry.

Summer in Penatanguishene General Hospital

At PGH, I was the youngest person there by at least 30 years for all but 3 of the weeks that I spent there. No one had heard of a brain AVM; some residents had had a stroke, but most were recovering from hip and knee replacement surgeries. The only real contact I had with young people was when one of the nurses who was just a bit older than me took me on outings with her friends (wheelchair and all); we went to the movies, to her place to hang out with her friends, and even to see her husband play in his band. Dad came to take me home every weekend, but it was really nice to get out with young people. I wouldn’t have had much of a summer without Callie and the generosity of her family and friends.

Arts and Crafts in Ottawa Rehabilitation Centre

At ORC, the demographics were different. Many more people were closer to my age; Helene and Tracey were both younger than I was. Several people were getting physiotherapy and occupational therapy after vehicular accidents. Many people, some younger than I, were there to recover from stroke, brain injury, or other related neurological conditions. Again, no one had heard of a brain AVM.

A group of us ate meals in the cafeteria and hung out together when we could. One night we all got bored and decided that we’d go to the Arts and Craft session that was being run by volunteers. They were doing Christmas centrepieces that night, making us glue little bits of Christmas paraphernalia to a rolled-up scroll with a ribbon on it.

Angela (my best friend at Rehabilitation Centre #2) looked over at Nick halfway through. Nick was in his mid-thirties, and trying to regain use of his dominant arm. The rest of us had been diplomatically silent about the fact that he’d abandoned the instruction sheet and was just gluing tinsel and Christmas cut-outs and glitter randomly all over his centrepiece. But Angela’s stoke had made her pretty blunt.

“Nick,” she said. “That is God-awful. Seriously, what are you doing?”

“It’s horrendous, isn’t it?” said Nick, shaking green sparkles onto a line of glue. “I’m going to give it to my mother. And if she doesn’t put it out every year, I’m going to act all huffy and insulted that she didn’t put out the decoration that I made just for her in rehab.” He grinned widely.

“You’re a terrible son,” I said.

“Oh, most definitely. Someone pass the stickers, please.”

Cry or Scream

We found ways to make ORC fun, but by definition it wasn’t really a fun place. Some of the people were recovering from some pretty devastating stuff. None of it was joking material, but there were quite a few that joked anyway. Not all the time. But I saw that dark humour that I’d used (still use) to make some situations in my life easier to deal with.

There’s a beautiful sequence from the television show “M.A.S.H”., where Hawkeye explains that if it seems like he’s cracking a joke every time he opens his mouth, it’s because he’s trying to keep from screaming. That quote is never very far from my mind. I wonder how many people are actually doing this on a daily basis, whether they realize it or not.

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