Portrait: Ginger
Within 2 months, Ginger had 2 brain injury surgeries which would go on to change her life in ways she had never imagined. In her story, she addresses important concepts that many survivors have to navigate.
A little bit about Ginger
My name is Ginger and I’m a proud volunteer for SameYou, working on this very Survivor Portrait Series. I’m also a disabled stroke and brain stem surgery survivor.
One morning in February 2017 I randomly woke up with double vision. I was 37 at the time - healthy, fit, active, and working as a graphic designer. While doctors initially thought it was a symptom of a sinus infection, an MRI later revealed a cavernous angioma in my brain stem that had bled and caused sixth nerve palsy in my right eye. I started wearing an eyepatch then and probably always will.
Wanting to avoid doing surgery, my doctors decided to “watch and wait“ the angioma over several months to be sure that it didn’t continue to bleed. For a while, monthly MRIs showed that things were stable. About a year and a half after that first MRI though, the angioma began to bleed again and increased to such size that I was told I needed brain stem surgery, and soon.
Brain Surgery #1
On November 9, 2018, I had surgery to remove the cavernous angioma and it was considered a success, despite the fact that I came out of it with permanent facial paralysis, worsened sixth nerve palsy in my right eye, and nystagmus in both eyes, which is essentially a condition that causes constant eye tremors.
They sent me home after a few days. I didn’t even go to rehab, which apparently is rare after this kind of surgery. Despite being absolutely devastated by my new deficits, I felt relieved to have the ordeal behind me.
Brain Surgery #2
Two months later, I began to have painful head surges, and over a span of a couple of days, began to develop significant mobility issues on my left side, severe tinnitus, and loss of taste. I admit now that I was in deep denial, rationalizing to myself that any, or all, of these symptoms were part of an unpredictable brain stem surgery recovery. However, I went ahead and packed a hospital bag and scheduled an MRI, just to “be on the safe side.” I remember driving home with my husband from the MRI, discussing our dinner plans, when we received the call from the hospital saying they saw my MRI and I needed to go immediately to ER because I was having a brain hemorrhage. We sped home and I grabbed my bag, called my mom, hugged the cats, and headed to the hospital.
I was in the Neuro ICU for a week before my surgeon returned from vacation and did a second emergency surgery to fix the hemorrhage and, hopefully, finally remove the leftover bleeding angioma. While the surgery lessened my tinnitus somewhat and repaired my sense of taste, the hemorrhage caused me to lose much of the sensation on my left side, from the top of my head to my toes, as well as the coordination/mobility on that side of my body.
Beginning the recovery journey
I went straight from the hospital into an inpatient therapy program to relearn how to walk and how to use my left hand. I was fresh out of a brain surgery and even though my body wanted to rest and recover, I spent my days doing hand-eye coordination exercises and being literally strapped to a walker as I learned how to walk - since my arm and leg had minds of their own - to help keep myself upright and my limbs steady.
Here’s how much I didn’t understand my situation: when they asked me upon arriving at rehab what my goal was, I said that I wanted to “walk out on my own.” Pretty quickly I changed my goal to “transfer from my bed to my wheelchair on my own” which I did manage to do before leaving.
The importance of therapy
Everyone around me - hospital and rehab staff, my husband, family, friends, therapists, neighbors, co-workers, etc - did (and continue to do) what they could to make me feel loved and worthy, despite the fact that my world had been completely ripped out from under me. I felt completely dismantled and disoriented.
I still feel this way some days but with the help of therapy I have developed a deeper understanding of myself and how to reach for compassion and patience instead of frustration and despair. I don’t always get it right, but I have the tools now to help me navigate the constant ups and downs.
However, therapy wasn’t something easy to come by. Mental health support was never offered to me in the hospital, rehab, or follow-up care.
I asked in the hospital and in rehab if there were counseling services available for people going through traumatic medical events and, unfortunately, there just weren’t. People actually seemed a bit surprised that I would ask.
I did my own research and, luckily, found an absolutely fantastic team of therapists in my area that completely changed my life. They helped me to accept and embrace my new reality. Shoutout to The Estuary and the Vanderbilt Osher Center!
Internalized ableism
I spent a lot of time in the beginning rejecting the “disabled identity". All I wanted was to do the things I had done before; be the person I had been before. It took some time and, again, therapy to realize how much that mindset was limiting me.
For example, for a long time I resisted the idea of using a wheelchair out in the world. I can walk, I would insist to myself. And yes, I can walk, but only for very short distances. But if I have any hope of seeing anything beyond a few steps in front of me, I will need to do it in a wheelchair. That may change in the future with continued physical therapy, but it may not.
Once I shifted my perspective to viewing a wheelchair as an empowerment aid, the whole world began to open up to me. I realized that I owe it to myself to use every tool available to me to expand my life. This isn’t weakness, it’s power.
Trusting your instincts around health
People like to say things like “most of the things you worry about happening never actually happen.” But what if the thing you were worried about actually happens?
We all have a responsibility to be the steward of our own health. I have found this particularly challenging because the worry of a recurrence is always there. So, symptoms pop up that may not seem like a big deal to most people, but they set off alarm bells for me. At the same time, as a person living with chronic and disruptive conditions, I have a high tolerance for discomfort and wonder if that could lead me to ignore warning signs. What has helped me is having a good relationship with my doctors, and not being too embarrassed or prideful to ask questions and share concerns. Everybody has weird health stuff. If your gut is telling you to loop your doctor in on something that’s bothering you, don’t think twice about doing it.
Adapting to a new body
The stroke wiped out the sensation in the left half of my body: from my toes through my legs, pelvis, torso, shoulder, neck, ear, scalp - exactly half. Some sensation has come back a bit and some hasn’t. Because of this, I struggle with proprioception, which is essentially the awareness you have of where a part of your body is located in space. For example, I still struggle knowing where my arm is laying at night in bed. I might think that it’s crossed over my body when it’s actually laying straight by my side. It has led to a feeling of my body not quite belonging to me.
Learning to do things with an arm and hand that you can’t feel is very strange. I once described it to an occupational therapist as a feeling as though I was using my mind to control someone else’s arm. In the early days after my stroke, my arm would seemingly act on its own. Randomly flying out and knocking over my water cup or hitting me in the face. Because it no longer felt like a part of me, I named my arm “Roxanne.” This allowed me to sometimes view her with amused detachment instead of frustration. Even though we cohabitate much better these days, she still often doesn’t feel like she belongs to me. Mindfulness and mirroring exercises have helped me integrate my two halves.
Pirate
As I mentioned before, I’ve been wearing an eyepatch since 2017. I wear the eyepatch 24/7 because of my vision. Also, due to the facial paralysis, I can’t blink so I must protect my eye always.
Needless to say, I get a lot of stares when I go out. I get lots of kids that excitedly ask me if I’m a pirate, or sometimes they just yell out “PIRATE!” at the top of their voice. Sometimes I get adults who think it is fun to ask me where my parrot is. Honestly, this doesn’t bother me for the most part. I don’t love that I have to wear it, but all things considered, an eyepatch is a fun accessory. And I absolutely don’t mind talking to people and answering questions. But sometimes, like anyone would, I just want to go out, mind my own business, and not be stared at. People will always be curious. It’s human nature and I can’t control what others do. I can only control how it makes me feel, and I’m working on that.
Life these days
After lots of physical and occupational therapy, I can walk without a cane for short distances, but mostly use a cane when I am out and about. Sometimes a wheelchair. My “balance centers” were damaged in the surgery and stroke, so even the slightest change in terrain can throw my balance way off.
I have chronic neuropathic pain that I manage with medication, yoga, and rest. I have limited use of my left hand but have continued gaining ability over time. I do have vision in my right eye, but due to the stroke and a botched corrective eye surgery, it’s not very usable so I wear an eyepatch over it. I have constant nystagmus and limited mobility in my “good“ eye, but it’s manageable if I rest my eyes often.
Even though I can only use the computer with my right hand, I’ve been able to go back to work as a graphic designer and a copywriter using some adaptive technologies like dictation software and a special mouse with mapped keyboard keys.
January 2024 is the five-year anniversary of that second brain surgery that saved my life, and the date I celebrate as my “Brainiversary”. I feel like I’ve only begun to scratch the surface of what I am capable of and am excited to continue exploring adaptive tech. Doctors like to tell you that most of your recovery will happen in the first six months. Maybe that’s true, but I’m here to tell you that you can continue making progress for years after. Never give up.
Message to those recovering
There’s a Leonard Cohen lyric that goes:
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in
We all experience heartbreak and pain. Sometimes we lose parts of ourselves that never come back. It’s OK to grieve those losses. We shatter and rebuild and are still capable of profound joy and growth. Every ounce of grace, love, and acceptance you can give yourself will fortify you for the road ahead.