I’m 53 years old, relatively healthy. Some high blood pressure but that’s nothing new, it’s been on and off. It’s been mostly under control for quite a few years, so I’m considered, to myself, healthy. I’m overweight, probably around 195 pounds. I’m the youngest of seven kids, so I’ve got tons of people around me. I have a very supportive partner. I work in I.T. for a very helpful organization. I worked there for thirty years, so I’m very lucky to have good medical benefits and long term disability coverage.
Acquired Brain Injury and my Journey
I just finished weeks of vacation and I had my weekend before returning to work on Monday. On one Saturday morning, September 7th, 2019, I was home alone, watching the news while drinking my coffee. I was sitting in a recliner with my feet up. My right leg moved up against my left leg. I didn’t initiate that movement, it just happened on its own. I couldn’t straighten my leg. So my first thought was, “how long is this going to last?” Then, as it continued, I’m like: “Okay, when did this become a problem that I need to address?” My right hand then started to be non-responsive and I was still very condescending about what was happening, but I really didn’t understand what it could be. I finally decided, “Okay, I need to get help.”
I reached for my cell phone and I dropped it. I couldn’t pick it up. I couldn’t control my hand well enough to actually grasp it. Since I was on a recliner, I couldn’t locate the lever to release the recliner, so I had to slide off from the recliner onto the floor. Then being on the floor, I had to find something to push up against. I had decreased grasp function and my right leg was very clumsy, kind of non-responsive. When you’re having a stroke, or at least my type of stroke because I didn’t meet the criteria, you don’t make good decisions. I figured I needed to get help. I live on the third floor in an apartment building. Instead of knocking on my neighbor’s door, I propped against the wall and went down three flights of stairs, on my own. Now, it took me five or ten minutes for my brain to tell my hand, to open my apartment door. I knew that I needed to be visible and I knew I needed to get help.
I took myself outside. I was in my pajamas and I had no ID on me, I had no shoes on. So I figured, if I was on the street, I would just look like a homeless person. I went to my parking lot and I yelled for help. While I was yelling for help, I thought I didn’t have enough power for people to hear me. I was worried that people wouldn’t find me. I got to my car and I thought that people might identify me as the woman to that vehicle and know I was part of the apartment complex. An old lady walked by, probably a resident, and she tried talking to me and I tried talking back. I could hear her and her reluctance to get involved with this half-dressed woman sitting on the ground. Then, luckily, my apartment building is very hot, so people have their windows and patio doors open. Someone on the first level, heard me call for help. She sent her son out and he saw me. He went to get his mom. She went to me and recognized me. However, we didn’t know each other by name. She told her son to call an ambulance and she was talking to me, but I had aphasia; I couldn’t speak. I kind of knew what I wanted to say, but it was like scrabble tiles in my head; I couldn’t format words and sentences. While we waited for the ambulance to come, she kept me calm and was very supportive.
When the ambulance came, they were nice but because I wasn’t experiencing the average symptoms of F.A.S.T (Facial drooping, Arm weakness, Speech difficulties, and Time), they thought I was on drugs. They took me to a local hospital and when I was in the back of the vehicle, I could kind of hear them making decisions and talking about what to do, where to take me. They were speaking in their paramedic speak and using abbreviations. So, they took me to the local hospital here in Richmond. At that time, I somehow gave my previous name. My recent memory was gone, but I was able to give them part of my name. They found my previous name in the hospital records. They kinda knew who I was. I couldn’t recite any phone numbers of people to contact. I couldn’t recite my address of where I live. There were some real gaps in what I was able to communicate.
It was really frustrating to not be able to communicate. As time went on, I was able to locate my sister’s phone number in my memory. The doctors called my sister and their first question was asking if I was a drug user. She told them: “No, absolutely not.” They eventually sent me for a CAT scan and that led to the diagnosis of a CVST. A cerebral venous sinus thrombosis, which is a rare stroke that happens in children or women in their fifties. Then, I had the usual stroke treatment, which unfortunately took hours to start. I requested all my medical papers from Richmond and I ended up in VGH (Vancouver General Hospital). It wasn’t until 3:30 that afternoon when they contacted my sister with the diagnosis. They told her she should come right away.
During that length of time, I was gradually getting a little bit better. My aphasia was resolving but my dexterity wasn’t really resolving that well. I was sent to the neurology ward at the local hospital here in Richmond, BC. They have a stroke unit, however, they never treated my type of stroke. Everything the neurologist did, he did with the direction of the stroke unit of VGH. They had me on an IV drip. I was there for about five days and I had a consultation with the rehabilitation Doctor. They were going to send me to “GF Strong”, the rehabilitation center in Vancouver.
Just prior to discharge, they did another CAT scan since five days had elapsed. They identified that I was still bleeding in my brain, even after being on the anticoagulant. When they realized that their treatment didn’t work, I was then transferred again to VGH into the stroke unit.
I had a great neurologist. I participated in a study that she was doing. So, I had two teams working with me. I had the hematology team and I had the stroke team; they would collaborate together. They discharged me around September 25th or 27th, 2019. I had to come back two days later for another CAT scan. When I went back for the CAT scan, they identified that I was still having brain bleeding. The doctor told me to get to the ER triage right away, don’t waste any time.
That was so scary. I’ve been discharged, I had gone to my workplace to reconnect with my work coordinator, I was really focused on what I was going to be able to do, and then I’m still bleeding. That’s not under control. On my second admission to VGH, the bleeding had gone into my optical area and I was starting to see double, but it was kind of in and out. It wasn’t really persistent. I didn’t trust my ability to describe the episodes of double vision, but they had me do the MoCa Test, a test I have done many times. https://www.mocatest.org/
On October 1st, I had to have a craniectomy. I have a missing part of my skull on my left parietal area; it’s about the size of the palm of your hand. On the last day of September, my partner was with me and I started speaking alphabet soup. I wasn’t making any sense, I had a headache, and my blood pressure was rising. So the nurse on duty called a neurologist. We started going through the standard, such as “what’s your name”, “do you know where you are,” “What’s the date,” “what city are we in”. Then I started vomiting. After that, they knew there was a problem with my brain pressure.
In going through my medical records, I could see the results of the cat scans they were doing, and my midline started shifting. They were measuring it in millimeters. Three millimeters, six millimeters, and then finally when it got to about nine millimeters, they called the neurosurgeon. Just after midnight, I had the craniectomy. I was out this whole time. After the vomiting and they took me down for the first CAT scan, I had no recollection until I woke up with bandages on my head and people I didn’t know were coming into my room.
Then, they had to make decisions about the blood thinners and what to put me on. They ended up putting me on a low molecular type of blood thinner but on discharge; I had to do self-injections. It was quite emotional to have to do injections twice a day and doing it all on my own. I was in the hospital overall for five weeks and then spent six weeks in a half-day program for patients in GF Strong. It was where I spoke to occupational therapists and physiotherapists.
Around mid-December 2019, I was called to step into work with my employer. It’s really quite interesting, I don’t have a lot of physical problems other than a bit of proprioception, where you’re not quite sure where you are in space. My right hand is very clumsy. I knock things over, I’m not always aware of where my right hand is. Overall, physically, I really have very few effects from the stroke, but I do have some effects on my memory. My long term memory is intact and I have no problems telling people where to drive, where to go, coming up with things from work, stuff like that. I kind of feel like a fraud because so many people have had massive life-changing experiences, yet I couldn’t pass as “normal” or “healthy”.
After the discharge worked, I was on 2,000 milligrams of Keppra. I’d never had a seizure before and I knew these were anti-seizure medications. I was talking to my neurologist about if I need to stay on these. She reduced it by 10% and in three days, I had a small seizure. So, we went back to the 2,000 milligrams and I was doing really well. Not exactly the same as my friends and family tell me, but I was doing pretty good.
On September 5th of 2020, two days short of my one year anniversary, I went for a walk and I had an episode of aphasia. I went to VGH and while we were doing a CAT scan, I ended up having my first and only, so far, grand mal seizure. I don’t remember anything about that. They brought me into one of the wards and I had multiple EEGs (electroencephalogram) since they were measuring my brain waves. The negative side of that is on discharge, they doubled the Keppra to 4,000 milligrams when the maximum dose is typically 3,000. They also added Clobazam at 20 milligrams. Clobazam is a benzodiazepine and I’m very familiar with the effects of the benzodiazepine. They’re typically a short term medication. Depending on the type of benzo it is, there can be addiction issues and functional issues. I only know that because my ex-husband was bipolar, so I saw many psychiatrists and medical doctors to help manage his medications.
There was really no consultation with me in the hospital about the medications that they were discharging me on. If I had known that was a benzo, I would’ve been able to collaborate with the doctors and come up with a replacement or have more understanding. Other than when I did a search about Clobazam and realized what it was. So here I am in a massive dosage of anti-seizure meds and the Clobazam; I can’t even function. When I’m talking to my co-workers, I have the sound of marbles in my mouth so my pronunciation was affected. My balance was affected, I couldn’t walk in a straight line; I couldn’t bend over to pick something up without falling over. I would get frustrated and cry multiple times a day. The Keppra increased the emotions and it made me very easy to cry and break down. The Clobazam made me very clumsy and unable to physically function.
When I contacted my first neurologist, as soon as she heard me speak, she knew that my meds were out of whack. So she referred me to another neurologist to manage my medication. We’ve reduced the Clobazam by 10 milligrams and we’ve reduced the Keppra by 1,000 milligrams. So our plan is to get me off the Clobazam altogether and then hopefully, go 100% on another medication and cut off the Keppra. However, we’ll see how that progresses because it’s a very slow process.
My Ongoing Recovery
I don’t know how people manage without an advocate to help them. It was very helpful to me to get my medical records and to see the progression of my treatment. It’s very helpful to manage my medication on my own. I know what I take, I know what the dosages are, I know how to dispense them. I feel really bad for the people who need that extra support. I have a diary of all my upcoming appointments, I keep notes, especially during these transitions of medication. I write down every day I cry and what the trigger was. I record how I’m doing physically because the Clobazam is still having an effect. I think of myself as something of a gyroscope. I’ll be walking down the hallway, and if I want to make a turn into my bedroom, I kind of wheel around a bit so I bump into a lot of door jams. I have a bit of a problem walking upstairs where my legs will cross. I’ll take a step up but it won’t be directly up, it’ll be off to the side a bit. I keep track of all of these things so I can give good feedback to the neurologist to guide them in our collaboration to make the right decision for my medications. We have a plan and we’ll adjust that plan in case I have any breakthrough seizures. That’s pretty much my medical history.
After that is of course the emotional impact. During this medication transition and part of keeping records, is my analysis of what issues am I encountering. Is the issue because of the medications? Is the issue because of the stroke? Or, is it just normal? In this time of COVID-19, people are going through a lot of emotional stress and missing people around them. In the early days of COVID-19, it didn’t make too much of a difference because I was not getting around that much. I still had to pass my driving test to be allowed to drive again, so I was kind of self-isolated anyways. I really have to evaluate, am I emotional because of the medications or because of the pandemic, or because of the stroke. It’s always analytical, I think you have to manage this like a project and I have an end goal. What is it going to take to get to that end goal?
One of the biggest challenges in my recovery is getting out to buy groceries and the loneliness of living alone. My partner lives a half-hour away and we spend every weekend together. He takes me to get groceries and we take the garbage out. Luckily, I am working. Four days a week, we have a half-hour meeting where I’m talking to my co-workers and I’m doing a bit of a project. I’m working under commendations. However, with living alone, it’s really the loneliness because I don’t have my driver’s license and with my grand mal seizure in September, I’m less independent than I was before. Since I have not had a replacement to my skull bone flap yet, I feel a little trepidation when taking transit very far. I’ve gone to the mall to pick up some bakery items, but it’s a very short trip and it’s on one bus. Getting to my hairdresser would be a couple of buses. With the COVID-19 restrictions for staying in your bubble and me recognizing that I do have asthma, it would be very risky for me to get exposed to COVID-19. As a result, I really am consistent with my maintaining my bubble.
Sometimes I feel my brain injury is all I have to talk about and I don’t have much to contribute to other people. It is the anticipation of the “how are you doing” question I constantly get asked. I went to see my sister-in-law last weekend, and I knew she was going to ask me how I was doing. Even the thought of her asking, started me tearing up because it’s family and you want people to understand. However, when you feel that’s all you can contribute, it’s really kind of tedious and it gets me emotional. That’s a bit of an issue. I haven’t been able to pick up my habits from before. I’m a paper crafter, a scrapbooker. I have so much patterned paper, inks, cardstock, and stamps. I have all of that artistic content that I really wish I was doing, however, I just had zero motivation to do it. If I was doing these crafts again, then I would have that to talk about. However, I have cleaned my craft room. I have time in the afternoon after I work where I could do some crafting, but I think I have to start small and then let it grow from there.
I think friends look at me too sympathetically and are either over helpful or under helpful. It’s really kind of hard to communicate how you need help. Sometimes, I don’t need help. My boss tells me I have way too high expectations of what I can do. It takes me time to understand a question. I need time to think about a question. I need time to prepare my answer to the question. Meetings go so fast and then I get defensive, for example, how much do you share with coworkers about what you’re going through as to not generate sympathy, but have them respect your disabilities? Especially when your disabilities are invisible. I go on the street and no one would know. My coworkers forget and people pile stuff on me. When I first started working, I did a PowerPoint presentation to my coworkers about what I learned during my rehabilitation and what I expected. Then on the one year anniversary of working, I had a talk with my coworkers about what we expected to happen, but this is what really happened in the past year. I can’t multitask, I get easily distracted. Conversations can be too long. With long stories, by the time we’ve got to the end, I’ve forgotten the beginning. I think sharing my challenges kind of helped in the acceptance and my engagement with work.
The Future for Me
The transition from victim to survivor is something that I’m really struggling with along with validating the limitations I have. I’ve read some of the consultations and things from the neurologist and the neurosurgeon. It’s trying to keep into perspective that I’ve really had quite a traumatic brain injury, and then accepting my limitations when they’re not so obvious. Making that shift is a challenge and it’s only been 17 months since my stroke. While that seems like a long time, it’s really not that long in a lifetime. I’m still waiting for that skull repair. I think I have the benefit of having the Director of Education for Neurosurgery as my neurosurgeon. He did my craniectomy in thirty-eight minutes on October 1st.
The repair of my skull flap is kind of non-urgent. It is coming up on sixteen months from that surgery, and I am still missing that part of my skull. However, the repair of the skull won’t have anything to do with my stroke recovery. So it’s really part of the perception of finishing something.
When the pandemic is over or more manageable I would like to see my friends. Some of my friends have kids, some of them don’t. My best friend lives in Victoria so that means a ferry ride. It’s just being able to engage with people.
Where do I see myself in 10 years? Well, I will be retired. I only have to work for three more years. I’ll be living with my partner in a smaller community. I’m very tired of being in the city, but my smaller community has to have connections or be easily reached from a very good hospital. It's not common for strokes that I have to reoccur, but my access to medical support is now one of my considerations for where I choose to live.