Tag Archives | family ties

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


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.


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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First Day of Spring!

It’s March 20…the First Day of Spring.  It’s a good day for  me.

Winter, Winter, Go Away…Bring on the First Day of Spring!

I don’t live *so* north in Canada that winter presents massively undue hardship. I lived in Saskatchewan when I was a kid, and I have vivid memories of snow on my birthday in September…a Halloween where it was -35 degrees Celsius with the windchill…and the stories that we were told in school of the little girl who took her mittens off, even though it was sunny, and had her hands freeze off.

It really didn’t get that cold here this year (although it has in the past) and there wasn’t even a whole lot of snow until after Christmas. I don’t mind being cold. I can deal with being cold. I can even deal with snow, to a point. It’s when the snow becomes packed on the sidewalks, and freezing

first day of spring

Rachel and Gillian walking during their visit

rain starts to cover it with ice…or when there’s a brief thaw, and then everything freezes up again…that winter starts to hamper my movements. Not only is it slow-going over the ice, I can never tell how far down my cane is going to go into snow when I’m trying to use it support myself.

And while some businesses are very good about keeping their steps and ramps cleared of snow and ice…some aren’t. But that’s another post, for another day.

My sister and her husband were up here recently from their home in Southern Ontario (which got almost no snow this year). They went for a walk around the hilly area in which my father lives, with Baby Gillian. When they returned, my sister said, “There’s so much snow and ice on the roads! How do you walk around here?”

“I don’t, really,” I said, thinking about how much money I’d spent on taxis that winter.

Yay Spring!

So, I’m happy to have gotten through the winter through to the First Day of Spring, as I’m sure are many people in my community who use wheelchairs or mobility aids, or who just have balance issues and live in fear during the winter of falling on the ice. Right now we’re enjoying wonderful weather. The snow is gone from the roads and sidewalks. It’s prime walking weather. We can probably expect a couple of more snowfalls, and maybe another cold snap, but the ground isn’t frozen anymore, so it won’t stay.

The worst is over! Bring on Spring! Happy First Day of Spring!

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A Bit of a Feminist Rant for a Friday, and Why I Now Feel Better


For David, Marc, Marsha, and Tracy…and Phil Rockstroh

A Very Good Day

In many ways, yesterday was a very good day.

The business that I’ve just opened, Running Steps, (http://www.runningsteps.ca/) is being very well-received. I got some very positive feedback yesterday on my website, and I may already have a small writing job. Talking about my business on Facebook has put me in touch with some old friends to whom I haven’t spoken in years, and doing some other marketing has brought some new friends into my life.

I had a very enjoyable lunch with my father and I got some adorable pictures from my sister of my now seven-month-old niece, Gillian. I know that I’m biased, but I think that she might just possibly be the most adorable baby ever:

And Yet… (Here Comes the Feminist Rant)

I did get myself good and upset, however, about some of what’s going on in America (from a feminist standpoint).  Romney’s sudden decision this week that he would get rid of Planned Parenthood as President, coupled with a bill in Arizona proposing that employers have the right to require female employees to prove that they’re not using birth control for sex before covering it under health plans, left me feeling sad and angry and…raw. It seems like a feminist nightmare. I don’t want my niece and the young girls that I’ve worked with in my career worked with growing up in a world where the most powerful nation in the world feels that women’s sexuality is something to be controlled, and where their bodies are war zones. I don’t want that trend spreading to Canada. Like the commentary I wrote on Britain’s Welfare Benefit Reform legislation, none of this affects me as a Canadian – except that it does.

Thankfully, I have friends, both male and female, that eventually talked me down from the shaking, teary mess that threatened to overwhelm me several times during the day.
And eventually I found something, from brilliant essayist Phil Rockstroh, that spoke to me as disability advocate, a feminist…and just as a person:


My take-away from this essay was the following, and it’s something that I think I’ll come back to again and again…especially on days where I feel powerless, or where I feel like my small efforts to make a difference in this world make no difference at all:

“How then is it possible to withstand feelings of powerlessness? Put one foot in front of the other. Write one word after the next on your protest sign. Make your life a flaming arrow aimed at the dry and rotted heart of the system or make your own heart a warm hearth of compassion for its victims, as you negotiate its cold realities. Thus, hope becomes a process of engagement, not a comforting lie; not the stuff of public relations hustlers and political hacks but a quality of honest conviction and persistent labor; and not a cynical marketing tool.”

Thank you, Mr. Rockstroh. I needed that.

Happy Friday

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Lost a Limb…Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you’re all looking forward to New Year’s!lost a limb

I spent Christmas with my family, at my sister’s house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I’m very aware that there are many childcare that skills I that I haven’t yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that’s why I’ve been a bit grumpy about a commercial that I’ve been seeing on television recently. It’s one of those commercials where people with various ailments and their doctors talk about how “We *will* find a cure for ____” (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I’ve stories that suggest that they do seem to run in families), women on my mother’s side tend to die young from cancer, and there’s stroke and diabetes on my father’s side…it’s not exactly comforting.

Lost a Limb? We Can Cure You!

The part of the commercial that annoys me is when the young doctor comes on and says, “We *will* find a way to regrow limbs.”  Granted, I haven’t lost a limb, but I pretty much live one-handed, and I don’t feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I’d once talked with a woman online who couldn’t understand why her blind date hadn’t told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn’t see any need to tell her. But clearly she’d had a problem with it.

When I hear things like, “We *will* find a way to regrow limbs,” I feel the same way. I feel like it’s society saying to people who have lost a limb, “We have a problem with you being like this, so we are going to cure you,” when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes

Not that navigating society without a limb isn’t difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one…it’s not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it’s been society’s problem with people with disabilities that’s made having disabilities difficult. Thank goodness that’s changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!

I’m fine with having little function in my left arm and hand. There are some things that I obviously can’t do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I’m not saying I wouldn’t try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be “cured” bothers me. It suggests that they’re not good enough, or can’t have productive, fulfilled lives,  the way they are right now.

And that’s simply not true.


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Practicing My Auntie Skills

I’m blogging from my sister’s house today. I’m visiting with her to help her get ready for Christmas.

Practicing being “Auntie Sarah”

brain avm

Rachel and Gillian

Of course, this means that I get to spend some time with my adorable little niece, Gillian, and practice my “auntie” skills. She’s now almost four months old. She grows and changes so much that she’s practically a different baby every time I see her. Now she’s very strong: she holds her head up, and tries to roll over when she plays on her floor mat, and screws up her little face and tries to pull herself out of her ExerSaucer when she’s had enough of bouncing around in it. She looks around the room to find the source of new sounds, her blue eyes wide and alert. She loves looking at faces. When she’s in a good mood, she’ll smile and giggle when I make funny faces at her.

I could play with her for hours.


Me and Gillian (first thing in the morning)

You Never Know What You Can Do                           Until You Try

However, it’s still felt strange, when I’m around her. I always feel like I’m the only adult who can’t pick her up  and soothe her when she cries. But today Rachel talked about how she often scoops Gillian up with one arm      while she has to carry something else, and speculated on how I should easily be able to do that given the strength   in my right arm. So I gave it a try. And I was thrilled to discover that, yes, I’m able to scoop Gillian up from a lying-down position using my right arm, bring her up to my shoulder, and even turn her around to have her lie over my arm (her favourite position, and Rachel’s favourite position as a baby as well, come to think of it).

I was over the moon. Rachel and Gavin were very        pleased. Even Gillian was happy, once I got her in her favourite position.

So, to date, I can change Gillian’s diaper with one hand, and also pick her up from a lying-down position. I also gave her an afternoon bottle.

I feel much more like an auntie.  It’s a very nice feeling. :)


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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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My AVM Story: Winter and Stroke-Brain

I came home from rehab for good in Christmas of 2000. The winter was a long one of stroke-brainreally not going much of anywhere except for physiotherapy a couple of times a week, walking in the high school in the early mornings, and the odd outing out of town for a movie with Dad. I was doing some correspondence courses to keep busy, and it didn’t do much to wear me out anyway. But one afternoon cabin fever set in, and my stroke-brain pushed me outside.

Blame it on Stroke-Brain

I believe I’ve talked before about how stroke survivors are prone to making bad decisions about what they can and can’t do with their new bodily capabilities.  I call that stroke-brain. Stroke-brain doesn’t always give people accurate messages about their bodies. A woman in Penatanguishene rehab that had a room across the hall from mine was constantly trying to stand up from her wheelchair and put things up on shelves or straighten a picture. I was much more stable on my feet than she was, and I was forever trying to get her to stay put in her wheelchair and let me do whatever she was trying to do before she fell and broke a hip. Her stroke-brain just didn’t let her  understand that she didn’t have the balance or the strength in her left leg to stand without support. Who knows, maybe my stroke-brain was giving me the wrong messages too.

The Great River Expedition

One day in those first months back from rehab, my stroke-brain told me that I had the balance and and strength to go for an early spring walk down to the river via the cleared area next to our house.  That involved navigating snow banks, deep snow, fallen trees, and eventually a brief path through the forest. I fell several times, which made me even more determined to get to the river.

I got there and back without doing grievous harm to myself, thankfully. I thought that my father would be pleased that I could actually manage terrain that difficult.

He wasn’t. As I remember it, I ended up promising that 1) I’d take the cell phone with me every time I went outside 2) I wouldn’t try to go down to the river alone again.

I’d known that The Great River Expedition was dicey. I hadn’t realized at the time that it was actually dangerous. I do now. Now I think it was one of those times when my stroke-brain thought that my body was capable of more than it actually was, and I’m really grateful that I didn’t end up hurting myself.

Learning As I Go

Learning the limits of my new body was a learning process. I can generally tell now when something’s going to be risky, given that my balance isn’t great, and I stay away from them.

I do admit to standing on a chair to change a lightbulb, which is something I (and probably  most people, when you get right down to it) shouldn’t do.

I never claimed to be perfect.


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Allow me to introduce someone important…

…myself. :)

After a lot of thinking, I’ve decided to start blogging under my real name. I feel like I need to put my name to my story as I’m telling it, and also that I need to “own” the opinions that I’m putting out there. I’ve been blogging under this pseudonym for nearly three months and it feels like it’s time to put a bit more of me into this blog.

I still have concerns about protecting people who could be affected by what I write, and have put a lot of thought into blogging with those concerns in mind. I will still change most names to protect privacy…but I’ll start noting when I’ve done that, and I’ll go back through the blog over the next while and note when I’ve done that. However, I’ll also back through the blog and change other things as well:

My sister’s name is Rachel, not “Karen”, and my father’s name is Joel. They pretty much put huge parts of their lives on hold from the phone call in Nanaimo until I came home for good from the Ottawa Rehabilitation Centre (Rehab Centre #2; Rehab Centre #1 is Penatanguishene General Hospital). My mother, Jean, died two years before all of this happened.

I am so grateful to my family for everything that they did to stand by me when I was recovering. I’m also grateful to Rachel’s then-boyfriend and now husband, Gavin, for the support that he gave to both her and to me; to all my friends (especially Kim, who sat with my family during the craniotomy and then convinced the nurses that she was my adopted sister so that she could come visit me right after)…for the people who visited me, and prayed for me…for my doctors (especially Dr. Katz, who I don’t think I ever did thank properly)…

And I’m grateful to all of you for reading. My name is Sarah Levis. It’s nice to meet you. :)


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Engineering Your Future

Some people want it to be perfect.

The Shopping List

When I got involved with online dating, I also posted, for a time, on a dating advice site associated with one of the dating sites. *That* was an experience, for many reasons.

One of the more puzzling attitudes that I came across was the idea of the “preference”, or set of standards that people had for a perfect partner.  Now, I have preferences: I like tall guys, I like guys whose politics are on the liberal side of the spectrum (to match my “bleeding heart” politics, as one guy I dated put it), and I like guys that, if don’t enjoy, will at least tolerate my occasional foray into movies relying on dark and/or juvenile humour that women my age shouldn’t find funny.

However, I’ve dated outside all of these preferences and had great relationships. There’s a group of people in society who have preferences from which they simply won’t deviate: If he’s not tall enough or doesn’t have enough hair, or she’s not thin enough or doesn’t conform enough to female gender roles, or he/she doesn’t make enough money or has something in their history, like depression, that causes discomfort (pick any one of them; these seem to be the main “deal-breakers”, if there are going to be any), it’s not going to work. End of story.

Inevitably, in a thread where this was being discussed, I or someone would come along and point out that peoples’ bodies change as they get older, people get fired from jobs or move on to new ones where they make not make as much, people get sick…circumstances just *change*, and if that preference that you predicated the entire relationship upon the other person having was once there and suddenly isn’t, what do you do?  Building a relationship on something transitory just doesn’t work.

But there was always a group of posters that didn’t want to hear that.

You Can’t Always Get What You Want

I was thinking about this the other day as I heard my sister  talk about how a couple she knew was progressing through through the process of adopting a brain avmbaby through the Children’s Aid Society. It’s a long process involving reference checks from the police, family and friends, home visits from an adoption worker, parenting classes, and sometimes fostering for the CAS before becoming adoptive parents. Rachel”s friends were finally getting to the top of the list for becoming adoptive parents.

I asked if the process went faster if you were willing to take, say, a child with Down’s Syndrome. Rachel said that it definitely did, but that her friends had specificed that they didn’t want a child with disabilities.  Apparently most of the children looking for adoptive homes in her friends’ area have Fetal Alcohol Syndrome.

On the one hand, I can understand not wanting to end up adopting a child with Fetal Alcohol Syndrome. FAS causes brain damage that not only leads to impulsiveness, diminished judgement, extreme mood swings, lack of self-discipline, and difficulty with social cues, but also causes physical damage to the eyes, ears, and teeth. A child will FAS will likely need interventions into adulthood to work and live independently, as symptoms often intensify with age. If a family is looking to adopt and doesn’t feel that they can handle that, best to be honest and say it right from the beginning.

However, the other part of wants to say to these friends of my sister’s, if I could: “You could get a perfectly healthy baby, take it home, have something happen somewhere down the line that causes a traumatic brain injury…and you’ve got a kid who’s struggling with impulsiveness, diminished judgement, mood swings, lack of self-discipline, and difficulty with social cues.”

“You might get a baby who ends up being on the autism spectrum…or mental health issues as a child or teen…or severe learning disorders…”

“Just because you said that you didn’t want a baby with a disability…is no guarantee that you’re not going to get one. I really, really hope you’ve thought about that.”

And I’m sure that they have, because they’re those kind of people.

But it still hurts a bit…most people who are adopting want a perfect baby.  Few people consider that the perfect baby *for* them might not actually be perfect.

If I’d had to be adopted, and they’d known that I’d had a ticking time bomb in my head…would anyone have adopted me?

For more information on FAS:  http://www.faslink.org/

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Not Inspirational, Just Me

I commented on a blog last night that I thought the author was inspirational, cringing as I did so…not because I didn’t mean what I said (because I did), but because I know how uncomfortable it makes me when people say that sort of thing to me.

I know that I went through a lot after the stroke, but I don’t consider myself inspirational, or even especially any more brave or strong than anyone else. I appreciate the sentiment of the compliment when people call me those things, but I usually tell them, “You’d do the same. You’d find your way through it.”

I have a lot of friends who’ve been through what I’d consider a lot worse and come out on the other side doing very well for themselves. Everyone’s got their own “bag of bricks” and, all things considered, mine’s pretty light.  I’ve always had a stable, supportive family, lots of other supportive adults in the wings, great friends, and opportunities to try new things.

For me, I also need to remember that even the people who aren’t “finding their way through” their tough stuff the way we or society expects (or even sanctions) are sometimes still trying their best to cope with whatever “bag of bricks” they happen to be carrying. I’m not condoning bad behaviour. I’m saying that, for me, sometimes I have to remember that there’s a reason, even if there isn’t an excuse. Some days, especially working with the population that I do, this is a tough one.

But I know that I said some hurtful things to my dad when I was first living at home after my stroke. I’m sure that I don’t even remember all of them. He says that he understands that it was the medications I was on. Maybe it was that. Maybe I was just angry that everything I’d planned for my life had gone so far off-track and he was a convenient target. Bad behaviour. No excuse. But reasons behind it. I’m sorry, Dad.

And I’m sorry, Miss McClung, for calling you inspirational. It won’t happen again. 😉



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