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by Sara Hansen
My name is Sara Hansen. Five and a half years ago I had brain surgery to remove a malformed cluster of blood vessels in my brain stem, called a cavernous malformation. Because it was in such a fundamental part of the brain, movement and vision were effected. I could either take my chances by leaving it and risk the effects if it bled again or I could have brain surgery to remove it. The malformation had a history of bleeding but the physical manifestations of future bleeds were unknown. I couldn’t take the chance of driving my kids somewhere and having a bleed. I didn’t want to always be looking over my shoulder. I went into the surgery thinking I’d live or I’d die, that there were only two outcomes. Becoming disabled never crossed my mind.
Life Before Surgery
My sons were three and five at the time. We had moved to my dream house on an acreage in Metchosin a few years prior. My job share was in the marketing department at Royal Roads University, just a 20-minute beautiful drive through the country with only two stop lights.
I was very active. I enjoyed spending time in my big vegetable garden. My father-in-law had just built a Mansfield roofed, red door chicken coop. I loved my flock of 40 heritage breed chickens.
I made the little cottage on our property into my art studio. I always planned to devote more time to art but work and life got in the way.
I loved getting a coffee with my husband and walking with our dogs. Our favourite spot was midway around a Metchosin park trail, where the trees met the ocean. We would find a good place to sit on the rocks and listen to the sea lions bark as they sun-bathed on a rock 200 feet off shore.
I Walked Into The Hospital But Couldn’t Walk Out
I had known about the cavernous malformation for a couple of years, but was told it was so deep in my brain that operating to remove it at that point would do more damage than good. But in 2010, I had my biggest bleed, leaving me off-balanced, numb on my left side and with vertigo. It bled to a surface of my brain my neurosurgeon could get to. I walked into the hospital for the surgery and couldn’t walk out. I have had four eye surgeries and still see double. I have a feeling on my left side and ataxia (lack of coordination).
I was in the hospital for four months.
My husband and I weren’t sure of the extent of my recovery. After a year hanging on to our house in Metchosin it looked as though I won’t be close to the same physically, we decided we had to move. I used to think of the surgery outcome as a detour while I healed physically. Now that I understand that I’m not going back in a lot of ways, I see it as a fork in the road.
We needed to be within walking distance to a school for our kids and to amenities for me.
Life After Surgery
Life as I knew it was shattered. I could no longer work and went on long term disability. I needed help with simple things – meal prep, carrying groceries, changing the bedding. I steel myself against being stared at the grocery store or wherever I am. I pretend to ignore the looks but they make me feel awful. I don’t think I’m the stereotypical driver of a mobility scooter. For someone who was fiercely independent and had a very misplaced emphasis on physical appearance, this change is really hard to adjust to.
My husband was my life jacket though all this. There were many days I clung to him so I wouldn’t drown in despair or uncertainty. My kids were young enough to take it in stride. They still see me as their mom.
My oldest boy, five at the time asked very innocently during dinner, “Mom, when will you walk again?”
That question made me feel like I had a bowling ball in my throat. I always wanted to be honest, not only so they’re in the loop of what’s happened to me, but also I never want to give them false hope. How do you explain to your children something that you’re trying to figure out yourself? “I don’t know if I’ll ever be able to walk again, hon. I’m practicing and getting stronger every day. Why do you ask?”
“Well, when you can walk, you can run behind me on my bike.” He went back to eating his spaghetti. So did I. Even though it looked a lot blurrier.
Patience Is A Daily Requirement
I have a hard time admitting I’m now part of the brain injury club. It’s not a group I wanted to belong to. What’s more, I get anxious going to new places. So many questions run through my head about logistics. How can I get there? Can my mobility scooter fit? Is there a bathroom I can fit into? Are there any steps? Where is a door I can get in? Will I need help? If I do, will there be someone there I feel OK asking? How can I get my food and hold a plate and cup? My former self might have just thought about what outfit to wear and where to park. It was so effortless then.
Everyone’s recovery is different. Every brain injury is unique but slow recovery seems to be the common thread through them all. Patience is needed all around. I need to remind myself to be gentle with myself. Expecting results after a certain time frame from a person with a brain injury can be totally demoralizing for that person or create a sense of failure. There are many days that I feel exhausted from fighting to gain just a little of the ground I lost. I’m glad the people close to me respect that I need rest.
I’ve learned there is no gate I’ll pass through and all of a sudden this trauma will be behind me. I think it’s an ongoing process where grief, sadness and anger are still there but will either diminish gradually over time or I’ll learn tools to control them effectively. I’ve learned that grief is okay. That grieving the loss over my former self can co-exist with hope.
I Redesigned My Priorities
Hope is a great motivator for me to keep trying and practicing. That maybe one day I’ll be able to walk with only a cane. That each year will just get better. Having hope makes things brighter in my new life.
My neurologist once said to me, ‘You’ve lost a lot but you haven’t lost everything.” I used that statement to redesign my priorities.
I was forced through this injury to rebuild myself and my life. Some pretty great things have taken a better, more focal, place in my world. I take my boys to and from school, which is minutes away. I now focus on my smile being the last thing they see before school and the first thing they see when I meet them, rather than thinking about work projects. I can’t garden the same way but I find growing vegetables in pots more manageable.
My disabilities are such that I can’t work. This has freed my mind and time to pursue real interests; like art and writing, including getting a recent essay published in the Globe and Mail. I can write when inspiration hits or experiment with a new art technique. And I can take a break when I need it.
I always wanted to go rock climbing. Now I do. I wanted to get back into horseback riding. Now I take weekly lessons through the therapeutic riding association. I really enjoy these activities. I also enjoy the reactions of people I tell of these activities because it defies their picture of someone with disabilities and what they can do.
Life Is Different – Not Worse
If I could go back to my able body I probably would. I am not going to say everything is all ribbons and rainbows now. I miss the ‘old’ me. I do like the opportunity I now have to spend my time in a way that aligns closer with my values. I am very grateful I am in this position rather than keeping the hectic pace of trying to make ends meet in an unfulfilling job, little family time and no space to pursue interests. Both versions of my life have their pros and cons. This life allows me to do things I never did before – I remind myself not to think of it as worse, just different.
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