Kathryn Simpson is a 34-year-old, outgoing, athletic elementary school teacher raised in Richmond, B.C. She attended the University of Maryland on a field hockey scholarship and majored in English.
“My team won two Division-1 National Championships there, which is pretty exciting. I then moved back home to pursue my education degree, which is where I met my husband. We’re
both teachers in Richmond, and that’s kind of when this whole thing started.”
By “this whole thing”, Kathryn means her journey with a brain injury. While 35 weeks pregnant
and teaching her grade 7 class, she experienced an ischemic stroke.
“It’s the most common kind of stroke, and I had an MCA – middle cerebral artery – one, which is
also the most common. [...] An ischemic stroke is caused by a [...] blood clot blocking arteries to
the brain, so the brain’s not getting the blood and the oxygen that it needs. Time is really, really
crucial, because once the stroke’s started you’re losing about 2 million brain cells every minute.
[...] I’m really fortunate that I was teaching at the time of my stroke – my students picked up
that there was something wrong right away, so [I was] very lucky. [...] My students saved my life,
and also [the school’s] principal knowing the signs of stroke – that is, I think, why I am alive and
thriving right now.”
I asked what kind of effects, both short term and long term, can occur after experiencing an
ischemic stroke.
“I’m almost exactly three years out, and I’m still discovering changes and the effects of stroke.
[...] The most obvious effects right away was that [...] I had weakness on the left side of my face.
My voice sounds different today than it did before the stroke, and I was completely paralyzed on
my left side, so I couldn’t move my left arm or my left leg. As time has gone on and I’ve lived in
this body, I’ve learned a little bit more about the cognitive effects, which tend to be “sneakier”:
it takes time to realize but I’m learning about those and focusing on them now.”
I asked if she had seen any improvement in these symptoms since.
“I’m really fortunate that I have access to a lot of services [and] therapy services. I was an
inpatient at GF Strong for about four months and [I] probably stood for the first time about a
month in, and then a few steps maybe about two months in. I’m still an outpatient there so I
continue to go there which I’m really lucky [for], and I have another physio that I work with, so
[...] this recovery is a marathon, certainly not a sprint! It’s been a slow go; I don’t have any
functional use of my left hand. The upper extremities usually come back slower than the lower,
but I pretty much walk all the time, I rarely use my wheelchair, [and] I have an AFO [Ankle Foot
Orthosis] and an activator pull that I use to walk. I was told that I would likely never walk again,
and I almost exclusively walk! So I’m pretty proud of myself, but it’s been slow and hard. But I’ve
had some really wonderful therapists. "
She told me more about her experiences post-stroke, including a loss of independence and increased fatigue.
“When my daughter was a baby and I required a caregiver for everything from dressing,
toileting, sitting/standing etc., I felt like my daughter and I were being treated the same. In a
matter of minutes, it felt like I changed from a grown woman to a baby. It was necessary, but at
the time, it was devastating. I have become significantly more independent as time goes on but
still require a lot of help and have taken a long time to accept that I'm unable to care for my
own child independently, particularly because she has her own unique needs. Our family is very
fortunate to have so many supports in place. Amongst some other cognitive changes, my
processing speed has been significantly impacted by my stroke which means I will likely never
drive or teach in a classroom again. This too obviously adds to a loss of independence and a big
shift in identity.”
“I have suffered two post-stroke seizures, which are fairly common with brain injuries, [and] the
medication for these only amplifies the other deficits. Everything requires a lot more effort,
patience, but also energy with an ABI [acquired brain injury]. It can be infuriating just trying to
put on a sock. Fatigue management, including a nap, will likely always be a part of my everyday
routine. All the things that seemed so mindless before, like getting dressed, become a daunting
task that requires a lot of determination. It sometimes feels that nothing will ever be easy again,
but many things are still possible with patience, practice, and some adaptations. Fight for your
goals, as cheesy as it sounds, you really need to believe in yourself!”
Two days after her stroke, Kathryn’s daughter, Isla, was born. At about two weeks old, Isla
contracted bacterial meningitis and returned to the NICU at the British Columbia Children’s
Hospital, while Kathryn moved from Vancouver General Hospital to the GF Strong Rehabilitation
Centre. Her husband would go back and forth between hospitals to see them both over the next
four months.
“I owe my husband a shout out! My husband has embraced a very unique role over the past
three years. He is a true champ! I wasn't really around for most of Isla's first year, so everything
fell on him and our parents who put their lives on hold to jump in and care for us both.”
“We’re really fortunate that my mother in-law caught [...] that something was wrong and
rushed her back to the NICU, which she had left maybe about two weeks earlier from being a
preemie. They got her there just in time. [...] [The] GF Strong inpatient program [was] kind of
like school; it’s a fairly intense rehab program. [...] So in my off time, I would try to get over to
[BC Children’s Hospital] to see her as much as possible. My therapy was kind of arranged around
my pumping schedule, so I would pump, stick the milk in my power wheelchair, wheel over to
Children’s, do a delivery, [...] it was really a surreal time.”
After being treated for her bacterial meningitis, Isla was diagnosed with cerebral palsy, but
Kathryn tells me she is a healthy, awesome, 3-year-old.
“Proud mom over here! She has defied the odds: we’ve heard from her neurologist [that] this kid should not be doing as well as she is, which just goes to show [that] with brain injury, there’s a lot of unknowns, so we’re kind of following her lead. She just turned three and is a ball of fun [and] energy. [She] loves music and books and she’s such a fun kid to be around, I just love being her mom. [...] We had a cerebral palsy diagnosis probably by the time she was one and a half. For her, it’s primarily her gross motor [abilities that are impacted]. She has spastic triplegia, which means it’s primarily in her legs [where there is] that tightness, and one of her arms is
slightly affected. [...] As of now, we’ve only seen developmental delays in her fine and gross
motors, otherwise she’s meeting all of her milestones and doing really well. [...] She currently
has AFO’s [ankle foot orthotics] as well that she wears, and she can walk with a walker. [...] We
just got a wheelchair as well. She’s starting preschool in the fall, so we’ll see what she prefers or
what works for her.”
Since I asked how Isla was doing currently, I also wanted to know how Kathryn is doing now in
her day to day life.
“We’re doing really well, particularly given the state of the world right now! We’re really
grateful to not be in and out of hospitals certainly as much as we were. All things considered we
know how fortunate we are, and we’re in a routine, we have a lot of support, which makes a big
difference. Rehab will be a constant in my life long-term, so I continue with physiotherapy [and]
occupational therapy. I’m starting to get into recreational therapy, which is really exciting
because [I’m] trying things like going to the pool. I tried pickleball the other day, and just
tapping into all the things I loved pre-stroke. [...] Recovery is really, really slow. I’m a positive
person, but I want to be honest in how frustrating it is. There’s good days and bad days, but
more so than ever before in the past three years, there’s a lot of good days. I’m feeling really
optimistic.”
Kathryn had previously described a “unique bond” between herself and Isla because of their
brain injuries, so I asked if there were any benefits or a comfort in their shared experience.
“It means a lot to me, obviously evokes a lot of emotion because it was so unexpected, this
journey we’ve been on. I think there is something just so beautiful in the bond that we have. My
relationship with brain injury is obviously going to be different than hers – I had 30 years as an
able-bodied person, and the nature of our brain injuries are different, but there is a lot of
overlap. I think our family is really unique in that before we go to bed, her and I put on our night
splints, and I just try to be as intentional as I can in modeling that for her and speaking really
kindly about my body, not personifying it and getting mad at myself. Before we leave the house
we [say] ‘ok, Isla has her braces on, mommy has her braces...’ and she’s started saying lately [...]
‘don’t forget your cane!’ and we say ‘dad, don’t forget your hat!’ because we needed something
for him, so it’s pretty sweet.”
“I think the silver lining of [our experience with brain injury] is that I’m able to model that it’s
okay to have a physical disability. There are challenges we don’t know – she’s only three –
perhaps all the ways that she’ll be impacted by cerebral palsy or by her brain injury, but I think
this is the most shared humanity or beautiful part of it all. And going into her medical appointments, I have a really unique perspective. I think brain injury is really hard to explain. I’m going through it and I’m still often confused by it! Things like spasticity and tone, which I think we both struggle with, are things that if you haven’t experienced it, it’s quite challenging to explain. I [...] kind of ‘speak’ brain injury [...], so I feel like I’m better equipped to advocate for her in a way.”
“I just want her to see that it’s okay, and that she’s strong and very capable, and that you can
live a full and joyful life in a variety of different bodies despite the challenges. I’m very aware
that I have two little eyes watching me in how I live. In our family, using a wheelchair or
adaptive equipment is pretty normal. [...] [I’ve] chosen to just see it as a positive, and she’s the
best inspiration in the world for me to keep working at it. She works so hard, and it doesn’t
matter the amount of therapy appointments, she’s just always game to work her hardest. I just
try to keep up with her! ”
She added that the goal for herself and Isla is not necessarily to try to appear as though they do
not have brain injuries, but rather to ensure that they are able to do the things that bring them
joy in life even with adaptations or modifications.
"I know first-hand what it is like to have a body that doesn't always work for you, or do what
you want it to, and how isolating and misunderstood that can feel. I think that has been a
unique gift in a way as a parent to a child with disabilities. There are limitations with brain
injury, perimeters you're testing but working within. Our family is not defined by brain injury,
but the reality is that it is an extremely impactful part of our lives. I hope to show Isla the
superpower of resilience that can come from being the "underdog". We do exercises together
every day and cheer each other on. We've recently introduced the word ‘frustrating’ because
disability of any kind can be very frustrating. I try to model that it IS hard and frustrating to do
certain tasks but that doesn't mean we don't try. Obviously, some days are more successful than
others.”
After hearing Kathryn’s story, I was curious to hear from her what kinds of things bring her joy
or peace, especially when times get difficult.
“Gratitude is a big thing. I tried to learn a lot about gratitude early on. Isla and I both had
near-death experiences, so we’re just happy to be here. [...] That being said, there’s just some
days that it’s really hard to find, but my daughter brings me the most joy. I just love being
around her and watching her learn, and I’m really grateful to be her mom and to experience this
with her. Having a really supportive and an amazing support system, friends who genuinely
want to help and try to understand has been a really big blessing...and becoming more active.
It’s been quite recent that I’ve been trying these recreational activities, but I feel through my
brain injury that I’ve lost myself. You really have to mourn [...] who you were in your prior life,
prior to brain injury...unfortunately that person is gone. Even though you may look completely
the same to other people, inside I feel like a completely different person, which is
understandably challenging for other people to understand. But getting back into sports and
things that are active make me feel more like myself. I’m really enjoying that as of late, but hands down the thing that makes me happiest is just spending time with my husband and my daughter.”
I brought up how I thought it was interesting that she used the word ‘mourn’, as I had heard the
same kind of language about mourning and grief from another interview.
“I think grief is really complicated. I’m sure everyone has their own relationship with it, but it
has been a challenging and long process and it kind of hits at different and sometimes
unexpected times. The dream of what I thought motherhood was [...] will not be the case.
There’s definitely a ‘death’, I would equate it to kind of... I feel like I’ve attended my own funeral.
It’s really complicated, because to everyone else, you’re still you! And people with the best of
intentions say that [...]. I can only speak on behalf of myself, but you feel like a totally different
person and it’s hard for people to accept, especially [because] it’s sad for them as well. They
have to mourn the loss of who you were, but the grieving process is ongoing and hard.”
I thought back to her dream of becoming a teacher, and asked if she would be returning to
teaching. She told me she is currently on long term disability and not ready to go back.
“I may be involved in teaching in the future in some capacity, but likely not classroom teaching,
just because of some of my cognitive deficits or changes. That was a big thing to have to grieve.
It was my dream to be a teacher, and I was in my first five years of my career, and then it’s over.
It was a really hard pill to swallow. I think grief is a process, but [I] eventually kind of settled on
being a little bit more comfortable and confident that I’m just not ready to be back in the
classroom, and that I will never be that teacher that I was. If I don’t find myself back as a
classroom teacher, I’ve accepted that. The loss of career is tied into your identity and that’s
something that I’ve had to mourn and accept.”
To close the interview, I asked Kathryn if she had anything she’d like to say to other brain injury
survivors or to those involved with them in any way.
“1. A brain injury doesn’t make you dumb. 2. Seek professional help where able. 3. Try not to
fight your brain injury, it's not something you can "outwork". 4. Try to develop strategies that
play into your strengths, you're definitely playing the long game. 5. Believe in the power of
neuroplasticity, but try to accept things will likely not be the same as they were before. 6. All
humans crave belonging and understanding, you're not asking for pity by sharing your needs. 7.
Adaptive equipment is nothing to be embarrassed about. This is something I am trying to model
for Isla but honestly, it has taken me 3 years to gain some confidence being ‘out and about’. I
know my daughter is watching and that helps me fake any confidence I may not have yet. I want
her to feel strong, capable, and beautiful no matter the equipment she uses to support her
goals.”
“I would recommend taking the time to grieve, and just allowing space for anger and fear and
loss. Give yourself as much self-compassion as you can. [...] For the inner circle of people who
may be caregivers or loved ones of someone experiencing an acquired brain injury, just try to be patient with that person as much as possible. [...] Life will be different, but there’s still a life worth living after experiencing stroke, or any kind of brain injury.”
Interviewed by Julia S.