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My Brain AVM: Proud to Be Canadian, 2013

brain avmHappy Canada Day!

I think that enough readers have joined us since last year that I’m not going to feel badly about this annual reblog of the first post that I wrote for a Canada Day, about my brain AVM and Canada’s health care system. I’m proud of our universal health care system, despite its imperfections, and I don’t mind repeating that.

I feel very badly feel American friends who haven’t been able to afford care that they’ve needed, or whose insurance limited how much physio they could receive after a stroke like mine. I know that many people really struggle.

I know that people in Canada are struggling as well to get what they need in their health care system, even though they shouldn’t have to. Elizabeth McClung opened my eyes to that. I miss you, Beth.

In a perfect world, every patient would get the care that I did. Thanks to dedicated staff in Canada’s health care system, I am both a brain AVM *and* a stroke survivor. I’m a very lucky person, to be where I am right now.

***

My Brain AVM Story

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors’ ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I’ve been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice.  The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated. Later, I  had a stroke that significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

The rehabilitation hospital kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total.

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect…and I really feel for people that have had a bad outcome because they’ve been put on a waiting list or because they’ve had to sit in an ER too long.  That absolutely shouldn’t happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can’t afford it.

It makes me grateful to be Canadian…and proud.

More about the AVM Clinic at Toronto Western Hospital.

Dr. Michael Tymianski did my craniotomy.

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My Brain AVM Story: Forgetting May 29

brain avmThe anniversary of my brain AVM surgery swept right past me this year.

It’s not that I go out of my way to make a big deal out of it each year. But I generally remember, on May 29, “Today’s the day when I had my brain AVM Surgery, the day when everything changed.”  My stroke happened a few days after my brain AVM surgery, but all that time is such a haze that I tend to think of Brain AVM Surgery Day as Stroke Day.

But I didn’t think of it at all this year.

What does Forgetting the Anniversary of my Brain AVM Surgery Mean?

I was busy. I’m working in my “hired nerd” job now, doing tech support. I’m writing for Ollibean, as well as doing my personal writing. On the 29th I just would have started another writing/editing/content management job for another website. Considering that I’m doing well if my socks match on any given day, it’s a lot to keep track of.

Maybe the significance of Brain AVM Surgery Day in the greater scheme of my life is just fading. Maybe my sense of who I am as a disabled person gives that day less and less power as the years go by. Maybe Brain AVM Surgery day will eventually just mark the day I made, in my mind, the quiet transition from “pre-stroke Sarah” to “post-stroke Sarah”…that I moved from the Sarah that I was when my arm and leg worked and I didn’t have to take medication for seizures to the Sarah that I am now that my arm and leg don’t work so well and I have to take a whack of pills every day (See Geneen Roth’s book “Appetites” for some writing on this idea that pulled me through some rough times).

I don’t think much about my arm and leg anymore and how much “better” they’ll get, or if they will get any better.  I don’t do physiotherapy or occupational therapy and haven’t for years. It’s not that I don’t think, from time to time, things like, “This would really be easier with two hands,” or “I need someone with two hands to help me with this,” but I either figure out a way to do what I need to or, or I call someone for help, or I wait until there’s someone around to help me.

It is what it is.

Conflict

But it’s becoming my own little pull between “acceptance” vs “cure”, because I’m slowly discovering that not keeping up with some kind of treatment regimen for the hand and leg, even if it has absolutely no effect on return of function, is having potentially having effects on my health in other ways. I wrote late in 2012 about how significant contracture in the muscles of my calf in my weak leg had brought on a suggestion from a doctor that I wear a brace for a few hours a day. Now it’s been suggested that I go see an osteopath about the contracture in my left hand, which I’ve learned from being a group on Facebook that some people treat with measures as drastic as Botox injections to relax muscles. I even had a doctor suggest to me once that I consider having tendons (or perhaps it was ligaments, I can’t remember) cut, but my neurosurgeon did not seem in support of that.

It’s been 13 years since Brain AVM Surgery Day and I feel like I’m taking tentative steps into a new phase of my life. I’m not sure where all this new information fits in when I’d basically thought I was happy enough as a disabled person to continue with things as they were…perhaps even happy enough to stop the hyper-vigilent watch for that day in May every year when everything changed.

Nothing ever fits neatly, it seems. But perhaps that’s just the nature of life.

I’m trying to stay open to the possibilities and to stay grateful for what I’ve been given. Which includes you, readers. Thank you for coming along with me on this journey.

 

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Check Me Out At abledis.com

As part of the “12-12-12″ series over at http://abledis.com/, Marissa is covering arteriovenous malformation (AVM) this month.

It was an AVM that caused my first stroke, and I had my (much larger) stroke after the surgery for the AVM.

Check out what Marissa has written so far. She’s put a lot of effort into this, and she’s been awesome to talk to.

http://abledis.com/12-12-12/sarah-levis

 

 

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My AVM Story: Reflections on Having Kids Post-Stroke

strokeMy niece, Gillian, is celebrating her first birthday on August 20. I will be attending her birthday party next Sunday. I’ve been thinking a lot lately about how having the stroke changed (or didn’t change) my feelings about having kids

Gillian – A Force to be Reckoned With, And Not Yet a Year Old

stroke

Just learning to walk…

Gillian has got quite the personality for such a little girl. I saw her over the weekend, and she’s almost walking on her own – she doesn’t quite have the confidence to let go of Mommy or Daddy’s hand yet, but she’s so close to taking off by herself. She talks constantly (some of it is even words!), loves looking at her board books, and is a total ham for the camera. She’s got a big, broad, smile and a laugh that breaks my heart. She’s just precious.

Being a Post-Stroke Mom

Having kids isn’t out of the question for me. It would require a lot of planning. I take some medications (for the seizure disorder that I developed after the stroke) that aren’t safe for a developing fetus, so I’d need to be slowly switched off of the ones I currently take and onto ones that would be safe for the baby. I’d want to talk with my neurosurgeon about the possibility of another stroke.

stroke

Happy Gillian

I’d think that it would be remote at this point, but it’s always in the back of my mind that the post-surgery stroke didn’t happen at the AVM site. I’ve never been exactly sure why that stroke happened, actually.

And there’s the issue of my weak side caused by my stroke, of course. My sister has a friend who knew of a women who raised several babies using one hand – she apparently got so good at it that no one thought anything of it. I believe it, but I can’t imagine how difficult it must have been to figure out how to do.

Lots of “Mothering” Opportunities…

The logistics of having my children seem difficult to work out for me. Someone asked me recently if the prospect of that makes me sad. I guess on some level it does, a little bit. But I’ve been hedging on the idea of having children in adulthood since high school. It’s not that I don’t like children – I very much like them. When I was younger, I was frightened that I wouldn’t be a very good mother. As I’ve gotten older, I’ve just never had the sense that other women seem to experience, that having children is something that I need to do.

I look around me and I see all sorts of children in my circle of influence that need a strong female presence in their life, and I think, “I can be that for them if they need it…if they want it.”  And I don’t think that it’s a coincidence that in the job I had supporting youth with intellectual disabilities, I’d often slip and call them “my kids”. I know the importance of professional boundaries and can easily keep them, but in my heart I’m very attached to and protective of all the people I support, the young people included…even the ones who come to me with many supports already in place.

And when Gillian breaks into a smile when she sees me, it’s enough. I feel very fortunate just to be here after the surgery and stroke to be a part of her life, to be able to watch her grow and to be one of the women surrounding her with love and support.

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Anxious About The Affordable Care Act…and Looking Back at my Brain AVM

It’s a big day for America. The Supreme Court is making it’s public ruling on the Affordable Care Act. True tobrain avm my form of investing much more emotionally in the politics of other countries than I do my own (except in election time in Canada, when I’m a real bear for six weeks), my stomach is tied up in knots over this.

I can’t really say why. Perhaps it’s because, being from a country that has universal health care, I hear about things like death panels and about how children with disabilities will suffer if the Act is brought in, and I get angry and think “That’s *so* not how it works!” Perhaps it’s because I know that I’d never have been able to afford the insurance I would have needed to even get my brain AVM surgeries done, let alone the after care. Perhaps it’s because I have friends in the US that I know are going without medical care because they can’t afford the insurance.

Perhaps I just can’t wrap my head around the idea of going without treatment because you don’t have the money to pay for the insurance.

At any rate, all of this has prompted me to bring out the “Grateful to Be Canadian” post that I printed on Canada Day last year a little early this year. I know that Canada’s medical system is far from perfect. But I’m damn glad to have it, and proud to live in a country that believes that medical care is a right, not a privilege.

William Peace at Bad Cripple has made many great posts lately about the Afforable Care Act, but I found this one especially striking: http://badcripple.blogspot.ca/2012/06/disability-and-health-care-michael.html

Happy Canada Day!  ;-)

My Brain AVM Story: Grateful to be Canadian

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors’ ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I’ve been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice.  The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy to treat the rest of the brain AVM. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated. I later had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

PGH kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total. I still see a seizure specialist (and, because I didn’t like the first one to whom I was referred, I asked if I could switch, and I was accommodated).

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had through the brain AVM ordeal. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect…and I really feel for people that have had a bad outcome because they’ve been put on a waiting list or because they’ve had to sit in an ER too long.  That absolutely shouldn’t happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can’t afford it.

It makes me grateful to be Canadian.

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After My Stroke: My “Weak” Hand/Arm/Leg

Recovering From My Stroke: My “Weak” Left Side

stroke

Reading a post by Grace Carpenter over at “My Happy Stroke”, I was reminded by how much trouble I used to have with referring to my left side, the side affected by my stroke, as my “weak” side.

Trouble because it wasn’t just that my side had been made “weak” by my stroke. Right after my stroke, it had been been nearly paralysed, or so it had seemed to me. I remember doctors asking me to lift my leg from the bed, and only being able to lift both a couple of inches. The foot that had kept its strong arch and pointed toes from years of highland dancing and ballet classes lay shapeless despite my best efforts to make it do anything. And my left hand, when I tried to open my fingers, wanted to remain a clenched fist.

The Problem with “Weak”

As Grace points out, “weak” is a problematic descriptor when it’s used to captured the full spectrum of experience with a limb that’s affected by a stroke:

  1. Weakness – Weakness is part of it, yes. Twelve years after my stroke, my left leg is strong enough to support my weight only for very short periods (this is a relatively recent development) and my left arm isn’t strong enough to hold very much. I do heavy lifting with my right arm and use my left arm as a brace, for extra support.
  2. Spasticity – For a long time (years), my left arm and leg had a lot of what my physiotherapists called “tone”. My arm and leg shook sometimes, and my arm jumped when I was startled (I was fun in scary movies).
  3. Lack of Sensation – Once, when I fell, I broke the little finger on my left hand and didn’t realize it until I had an x-ray of my hand done to look into something else. I couldn’t feel it that I’d broken my finger.
  4. Lack of Proprioception – For a long time (years), if I closed my eyes and someone raised my left arm in the air, I wouldn’t be able to detect where it was. For all I knew, it could be just be a few inches from my side, or out at shoulder-level, or straight above my head.
  5. Neglect – I’m pretty good about not neglecting my left side now, but occasionally I’ll walk outside with my t-shirt hiked half up my left side, or I’ll not realize that my jacket has slipped off my left shoulder to my elbow. It used to happen much more than it does now, though.

I generally use the word “weak” to describe my left side, just because I haven’t come across an alternative that I like (well, on my less-than-good-days, I might say “bad”, but I don’t mean it.)

Grace is considering “gimpy” but there’s something that doesn’t sit quite right about that with me, either…but if it works for Grace, more power to her! :)

Anyway, if you watch the video at the end of Grace’s post, you can get an idea of how my left arm now moves. It looks as if we’ve got about the same amount of arm movement and control, but Grace definitely has more fine motor skills in her hand. I am not to the point where I can pick up cutlery with my hand; the more I try to move my fingers, the more they want to curl up into a fist.

I really like Grace’s blog. Go check it out: http://myhappystroke.blogspot.ca/

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My Brain AVM: May 29, 2000 – Open-Brain Surgery!

I had two surgeries to fix my brain AVM. One was the open-brain surgery, of open-brain surgerycourse, but the first was an embolization. People who have had an angiogram or angiography will be familiar with embolization. The doctor fed a wire through the artery in my thigh, up through my body into my brain. He used an adhesive attached to the wire to reduce the size of the AVM. That’s a very simplistic explanation, but it’s the gist of what happened.

I have to comment on this, because I still think it’s amazing. I’d never had surgery before or anaesthesia before.  The anaesthesiologist asked me to count backwards from 100, and suddenly I wasn’t awake – and then I was. It seemed like I had just closed my eyes. I wouldn’t learn until later that the surgery had taken four hours.

“Can we get this started?” I said, annoyed.

“It’s done,” said a nurse that I didn’t recognize. “You’re in the recovery room.”

I was stunned.

Bring on the Open-Brain Surgery!

I don’t remember much of the weekend that followed. I do remember being so convinced one night that I heard my dog’s toenails on the floor in my room that I called the nurse to ask who had let her in (more a testament to the drugs they’d given me than anything else). She assured that there was no dog in the room…but my family’s mutterings during altered states of consciousness in hospitals is a whole other blog post.

I do remember the night before I went in for my open-brain surgery, just a couple of days later. I was still in the hospital. I sat with my family. I called my friends on the pay phone.  I took a shower, since I didn’t know when I’d next get one after the open-brain surgery. I made sure that my dad knew where my letters to everyone were, in case something went wrong with the open-brain surgery. I did sleep, surprisingly.

And early in the morning, twelve years ago today, I waved to my dad and my sister as the nurses wheeled me away on a stretcher for open-brain surgery.

There wasn’t much prep. They only had to shave a little bit of my long hair, which was really nice, because I’d been psyching myself up to lose all of it. I thought that they just automatically shaved your head for open-brain surgery. I’d later cut my hair short, but I was happy to keep it for the moment.  In the operating room, I talked briefly with my neurosurgeon, Dr. Tymianski. The anaesthestiologist had me count back from one-hundred, and suddenly I wasn’t awake -

- and then I was. And I was annoyed – because there was a tube down my throat and a piece of plastic over my tongue, and no one would move it. You can read about that here: http://www.girlwiththecane.com/finger-spelling/

Sometimes things don’t happen quite the way we think they will.  Dr. Tymianski and his surgical team weren’t able to totally fix all of the AVM during the open-brain surgery. A piece had to be left, which later sealed itself off and is no longer an issue. A bleed in an area not far from the AVM site a couple of days after the open-brain surgery caused the stroke that wiped out my left side and so drastically changed the course of my life.

But I knew the risks. Dr. Tymianski told me that there was a 10% chance that the open-brain surgery would cause irreparable damage, and a 15% that it would cause damage that we could repair. That meant there was a 75% chance that nothing bad would happen. And I’d gotten through my first stroke with no damage, but statistically, if I left the AVM alone, I was going to have at least one more. Who knew damage the next one might cause?

So I played the odds and I hit that 10% that no one wanted me to hit. As my father said, “You can’t expect someone to put a Mixmaster in your head for 14 hours and come out totally unaffected.”

But he also said, “Just because your life turns out differently than you expected, doesn’t mean that it has to turn out worse.” And he was right. :)

Let’s all toast to that today: Just because life turns out differently than you expected, doesn’t mean that it has to turn out worse.

More about the Toronto Western AVM Clinic: http://www.uhn.ca/Clinics_&_Services/clinics/vascular_malformation.asp

 

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My Brain AVM Story: Living Post-Stroke – “The Little Ways”

I had a conversation recently with a woman who’d had to live one-handed for a while after post-strokea car accident (using her non-dominant hand, like I do), and who also lived with what she thought was a brain injury for quite some time (it turned out that her tendency to lose words or use the wrong word in a sentence was due to severe sleep apnea). It started me thinking about the little ways in which I’ve had to adjust my post-stroke life.

My Friends Tell Me I’m Just Getting Old, But…

Before the stroke, I didn’t use a calendar or daybook. I didn’t need them. I could keep track of my schedule and my appointments in my head. I could also remember phone numbers with without any difficulty.

Post-stroke, I can’t do either, and accepting that I now need to write everything down has been difficult. It’s interesting that while I’m generally accepting of how my abilities have changed post-stroke in just about every other sphere of my life, I sometimes “rebel” about the change in this one. I’ll then have to call and ask when an appointment time is, or even miss an appointment, and the embarrassment puts me on track with writing things down again.

Living Post-Stroke with One Hand

I’ve talked elsewhere about how I do most of what I need to do post-stroke with one hand, without even thinking about it now. There are a couple of things that required some creativity to get around:

  • Putting on my bra. Maybe I’ll demonstrate this (fully-clothed) on the You-Tube channel someday.
  • Wearing dress shoes. I generally wear Blundtstones boots, for ankle support, and I have to be careful with dress shoes because my left foot doesn’t sit well in them and I’ll walk right out of them. For my sister’s wedding, we secured my left foot in my shoe with some dressmaker’s elastic. I wear black ballet shoe-style slippers when I can get away with it.
  • Opening containers. I open often bags (like chip bags) with my right hand and my teeth, which is very undignified but effective. My medicines are in non-childproof containers to make them easier to open. I can open some jars, but sometimes I must ask for help.

I used to have a lot of trouble asking for help, and I still don’t really like to, but I’m not embarrassed when I do. I’ve got a good sense now of when I’m wasting a lot of time and energy and just ultimately frustrating myself trying do something that someone with two hands could easily do in under a under a moment. Last night I asked my brother-in-law to cut my steak for me. I’ve also been known to walk out into the lounge in my building and ask someone to open a jar for me.

All in all, I’m living a very functional, pain-free post-stroke life, and I’m very, very grateful for that. Things could definitely be a lot worse.

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I Don’t Need Easy – Julianna Russell

I love working with teenagers. Granted, sometimes their behaviour sometimes frustrate the hell out of me, buJulianna Russelllt we need to remember that even in the healthiest of teenagers, their brains don’t fully develop until their mid-twenties. It makes the achievements of teens like Julianna Russell stand out even more.

Julianna is another person whose achievements need celebrating this International Developmental Disabilities Month. Born with spina bifida, at age 16 she discovered that she didn’t have enough feeling in her legs to operate the pedals in a car. However, determined to get her driver’s license, she researched her options on the Internet. After taking an adapted driving course and having her car outfitted with hand controls, she was able to get her license.

She also started her own website, I Don’t Need Easy, to share with other youth with disabilities how she did it and to give them a place to network and share other experiences of growing up with disabilities.

http://www.ledger-enquirer.com/2012/03/25/1983570/teen-creates-website-to-help-other.html

Relating to Julianna Russell

When I read Julianna Russell’s story, I thought she was wonderfully brave.

I got my driver’s license at 16 without any problem. But after my brain surgery, I started having seizures. The surgery left some scar tissue that just sent my brain into spasms. The first little while they were large seizures that came on with little warning (although I could usually say within a couple of days that one was coming on) and caused me to lose consciousness. Gradually, as my doctors fine-tuned my medications, the seizures became rarer and rarer – but I’d be awake through them as they happened. Eventually they became tremors my arm or leg so small that no one but me knew that anything was happening. It was at that point that my neurologist declared that I could start thinking about driving again, and wrote a letter to the Ministry of Transportation for me.

But by that point I’d been over a decade without a license. It was a terrible drain on my independence, yes. My town had no public transportation. I had to rely on taxis and the good nature of others to get anywhere outside of town. Having no license put me out of the running for most jobs in social services in the area. But I sat on the letter and the opportunity to start getting my license back…for far too long…and I’m not really sure why.

I knew I’d have to start all over again after such a long period without driving, but that didn’t *really* bother me. Something else was holding me back and, like I said, I’m not sure what it was. I have the first stage of my license now, though, and will be able to take my full driver’s test in February 2012.

But I can relate to wanting the independence of being able to drive oneself around, instead of relying on other people. Kudos to Julianna Russell for finding a way to get her license and for using her talent and abilities to share with others how she did it! I actually used her site to investigate adaptations to car steering wheels.

I Don’t Need Easy

Julianna Russell’s website is here: http://hstrial-dischallenges.homestead.com/index.html

It’s obviously just getting started, and hopefully she’ll get some more people post some stories. But for people (not just necessarily teens) with disabilities that want to drive and the people that are going to be helping them, it’s a good place to start getting information. Great job, Julianna Russell! Keep it up!

 

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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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