At the end of 2009, I was newly sober and had sought help at Mental Health and Addictions Services. While there, I saw an addictions counselor, a psychologist, and a medical doctor. During routine check up and bloodwork, the doc was concerned about my immune system because of addiction and poor diet and lifestyle. Because my hubby had Hep C at the time and there was not yet an effective cure, Doc recommended that I at least take the Hep A and B vaccines. She also recommended the flu vaccine. Since it was during the Swine flu (H1N1) pandemic, there was a new combination seasonal/H1N1 vaccine available. Also, my periods were so painful that I had decided to try Depo-Provera to stop them. So, she administered the Depo-Provera and Hep A vaccine that day. A week later, I returned for the Hep B and flu vaccines.
Two weeks later, I began developing symptoms that grew worse as each day passed. First blurred vision, then dizziness, followed by weakness, vertigo, inability to swallow, double vision, and loss of consciousness. I visited Surrey Memorial hospital about 7 times in 2 weeks. Each time, the tests would come back normal and they would send me home. Finally, I paid a visit to my doctor. She took one look at the symptoms and immediately sent me to a neurologist at Royal Columbian Hospital, who immediately sent me to a neuro-ophthalmologist at St. Paul’s Hospital, who sent me right back to the neurologist, who immediately had me admitted to the ER.
I was whisked up to the Neurology Unit where I underwent a flurry of tests, scans and procedures. There was MRIs and CT Scans (with and without dye), insertion of an IV, dozens of blood tests and cultures (they ended up putting in a PICC line because my veins were collapsing), ECGS, EEGs, insertion of a EGD/nasal feeding tube (a horribly uncomfortable experience), and 2 agonizing Lumbar Punctures. All the while I kept getting sicker while the doctors scratched their heads.
No one knew what was wrong with me. No one except my neurologist. He said it could very well be an illness called Bickerstaff Brainstem Encephalitis, an acute autoimmune inflammatory demyelinating polyneuropathy, similar to Gillian Barre Syndrome and Miller Fisher’s. The best known treatment for that is Immune Globulin Intravenous (IGIV), which they administered, but it was too late. One night, about a week after I was admitted, I suddenly found myself unable to breathe. As I struggled to inhale, everything went dark.
I was intubated, attached to a ventilator, and placed in a drug-induced coma. I stayed in the coma for 6 weeks because whenever they tried to bring me out, I thrashed so badly with seizures and muscle spasms that they were fearful I would tear my muscles from my bones. While in the coma, my body fought wildly against death, somehow surviving respiratory failure, cardiac failure, sepsis, renal failure, and ARDS.
My sister tells a story of being summoned to the hospital by my tearful and panicking mother:
“When I arrive I see my mother and my aunt sitting at Jennifer’s bedside, my mom holding her hand, my aunt holding my mom, and all I can think is: “Oh God! I’m too late!” I step into her room to hear the various monitors beeping steady. That’s a good sign, right? Within a few minutes, that steady beeping turns frenzied. Jenn’s heart rate is climbing. 100,140,180,210, 232… “STOP!!!!!!!” I’m thinking: “Her heart is going to explode!” Then gradually it starts to slow down: 200, 160,120,80,65,42,27,11,0…… Good god, what the hell is going on? I don’t know how long I’ve held my breath for, waiting for a heart beat, I start to feel dizzy, weak at the knees. I feel like I’m going to throw up!….then….beep, beep, beep. Heart rate starts to climb again. For the next several hours this sickening scenario plays over and over and over again, each time leaving a knot in my stomach, a tighter grip on the back of my neck that is creating a mind numbing migraine, and a heart that is breaking piece by piece. I feel as though I have watched my sister die over and over, and I am helpless, powerless! All I can do is sit with her and watch the horror unfold in front of me.”
Twice I was on the brink of death and was yanked back before plummeting over. Why? I’ll never know. And, no, there was no white light, no ethereal welcoming loved ones, and no bearded, long-haired guy in a white robe. Just one long sleep punctuated by images and sounds of loved ones. I have two such memories: The first is of my aunt to from Regina reading The Cricket in Times Square to me. The second is of my mother singing Blue Canadian Rockies to me. And I have one disturbing memory of several white-coated fellows (I’m assuming they are doctors) standing near my bed. I cannot really hear what they are discussing, but at the last second before it goes dark, of those fellows says: “She’s circling the drain”.
When I first came out of the coma, I was completely unresponsive. I was scoring a 3 on the Glasgow Coma scale, no reflexes, no response to pain. My family was terrified and the doctors were not hopeful. After what my brain and body had been through, it was a surprise I was even alive at all.
But one day I opened my eyes, and even with the double vision, I could just make out my mother, sitting and reading by the light. The light was making a halo around her head, and her hair was a rich mahogany. She looked just like a woman from a Renaissance painting. I tried to speak, to tell her that I was awake, that I was okay, but found that I couldn’t. So I tried raising my hand to get her attention, but found I couldn’t do that either. I felt panicked, terrified! I was paralyzed from the neck down, I could not see from the blurred double vision, and I could not speak from the Tracheostomy.
It was such a frightening, confusing, terribly lonely time. My medication doses were very high so I was in and out of consciousness, and each time I woke up, I became terrified again. Nurses and technicians were constantly whisking me away for more scans and tests and procedures. Doctors stood over me and discussed me as if I weren’t right under their noses. Care-aids came and washed me and discussed their lives over my body as if I were simply a load of laundry. I existed and did not exist. I took up space but not thought. I was a human being but not a person. And I could not express my angst. I was a warm body in a bed, nothing more.
Fortunately, after a short period, the paralysis wore off, but I was bedridden, my muscles so weak that I couldn’t even sit up. I couldn’t stand because both ankles were contractured into a pointed toe like a ballerina. I couldn’t move my arms very well because both shoulders were contractured. I was able to print simple sentences which eased the insanity I felt creeping in. I remember the day my husband put that pencil in my hand for the first time. Everyone kept saying: “It’s too soon. It’s too soon!” But he asked me: “Can you understand me?”, and held that paper for me as I wrote: “Yes” then burst into tears. I was finally able to communicate!
I spent the next 18 months at RCH, most of it in ICU and CCU. I relied primarily on my sense of hearing and my sense of smell. I got to know nurses, doctors, care-aids by the sound of their voice or by their scent. It was a small and compact world I lived in. My universe was the hospital, my world the room I lived in, and my home was in my head, the only safe place in my universe. My husband and my mother were my touchstones, the pillars sprung from a solid foundation that I could cling to for support.
My mother left her job to be with me. For over a year, she would come to me in the morning and not leave me until dinnertime almost every day. She washed my hair, read to me, listened to audio books and music with me, massaged my feet and hands when I could stand to be touched, and took me and my bulky wheelchair with oxygen tanks and catheter bags and IVs in tow outside to enjoy the sun. She would sit and talk with me on all kinds of topics, from light and funny to deep and emotional. I don’t think my mother understands how vital those conversations were to my mental health! Without those conversations I would have caved into myself, retreated into my small but safe bubble of self-involvement, and slid into that swamp of angry, lonely self-exile. Without her constant presence, her mental stimulation, her gentleness, her devotion to my recovery, I think I might have gone quite mad.
My husband was my defender and entertainment system. He tirelessly looked for ways to alleviate my boredom and loneliness. Because of the double vision, I could not make out anything too small. So, every month my husband would make a giant calendar so I could keep track of time and important dates. He would also make up a giant Goals and Accomplishments sheet where we would list my goals for the month and list each accomplishment I made, no matter how small (touched my finger to my nose, sat on edge of bed for 10 sec). Each week, he would haul out the National Geographic magazines, and he would cut out images that appealed to me and post them on the wall across from my bed so I would have something to look at as I lay for hours and hours in bed with no capability of entertaining myself. My husband has a mischievous side and would take me to the basement of the hospital, where we’re not allowed to go, just to explore! Or he would take me off hospital grounds to check out the nearby festival. He learned all the machines and procedures in the hospital so that when the nurses were busy (which was always!) he could help me himself. So he would use the ceiling lift to transfer me to me wheelchair and back, use the suction when my trach was blocked, change my suction bag, and any number of routine hospital tasks. If ever I was abused by a nurse (It happens a lot more than you think!) or if my room was dirty, he would be the first to stand up for me because he really understood how vulnerable I was. Without my husband by my side, my time without visitors would have been unbearable, and I truly believe I would have been mistreated far more often.
I went from ICU to CCU then up to the Neurology Ward, and everyone was feeling relieved that I was finally out of the woods. But I still needed to be supervised to make sure everything was okay. It was decided that it was time for me to relearn to tolerate sitting in a chair. So, each day a pair of nurses would come and swing me into a wheelchair using an overhead lift. This wheelchair was a tank, loaded with extra One day, the nurse on duty told me she would come back at a certain time and that she will not come if I shout. So once again the pain and spasticity came and grew and tortured me. I couldn’t see the clock so I didn’t know when the nurse would come. So I shouted and she didn’t come. I began to spasm so bad that I began to slide in my chair. I called out in panic this time. She didn’t come. Slid some more until my seat belt was around my chest and my bottom was no longer on the seat. I could barely breathe. This time I yelled: “Help! I’m slipping!” She didn’t come. All went dark…
I woke up in the ICU. They said I “crashed”. But I didn’t report what happened because I was exhausted and drugged again. I guess I’ll never know whether the neglect caused the crash or whether it would have happened anyway. Whatever the case, the joy and hope my family had been feeling had turned to ash, and I was back at square one.
Again I went from ICU to CCU to back up on the ward. While in CCU, I encountered an authoritarian nurse who took issue with the fact that I was so “needy”. She felt that I rang the nurse bell too often and had no respect for the other patients’ needs. Now, please try to remember that I was bedridden and my shoulders were contractured so I could barely move my arms. This meant that I literally could not reach anything aside from my face and my nurse bell (as long as it did not fall off my chest). Not my fan, not a television, couldn’t hold a book, not even my bed controls. When you are in full control of your mental faculties but nothing else, you tend to find your voice. And yes, I think maybe I did ring that bell for no other reason than just to be able to see another human being. I was so terribly lonely and bored.
I went back up to the ward and once again began physiotherapy and recovery. One day it was discovered there was a hole in my GJ Tube, which was how I was fed and how I received most of my medications. At the time, there was a major incident which had the ER overwhelmed, and there was no one available to replace the tube. I’m not sure how long I went without the massive doses of meds I was on, but it was long enough that I ended up crashing again. Once again, I returned to the ICU. When I woke up this time, my right hand and wrist was horribly twisted. No one had a real explanation, and nothing was ever said about the incident again.
This time, they made an exception for me and kept me in CCU for months longer than is normal because I’m such an “unusual case”. I was starting to become used to being “the unusual case”. My disease was unusual, my response to being brought out of the coma was unusual, my feet were unusual, my dependence on the Tracheostomy was unusual, and now my hand was unusual. So many doctors and specialists came and went I could not keep track of them all. I was an enigma. A puzzle everyone wanted to solve but no one could.
Early on in my recovery, the doctors told me two things: That I would never walk on my own two feet again, and that I would probably have to use a Tracheostomy for the rest of my life. Because my feet were so badly pointer-flexed, I was told that the only way I would walk again is if my feet were amputated and I wore prosthetics. Fortunately, Dr. R Reebye, a physiatrist (specialist in Physical Rehab) happened to be looking at my case. He decided to take on my case and has been with me ever since. In February of 2011, he suggested doing Tendon-Release surgery on both Achilles tendons instead of amputation which I obviously thought was a fine idea! After the surgery, I suffered painful serial-casting and excruciating practice on the standing-frame. By the end of 2011, I was standing and walking unassisted on my own two feet!
The second disturbing thing I was told, that I would wear a Tracheostomy for the rest of my life. To prepare for the removal of the trach, they tried plugging it to see if I could breathe through my mouth and nose. I found that I could exhale, but not inhale. They kept returning to try again and again, to no avail. I was accused of not trying hard enough and of mentally blocking my recovery. They even secretly plugged my trach without my knowledge during a physiotherapy session in an attempt to ‘break my mental block’, which was nearly disastrous. Even so, they scheduled the procedure to remove my trach anyway. It was, of course, unsuccessful, with the doctor having to quickly shove the trach back in. After investigating, it was discovered that my vocal chords were partially damaged and still paralyzed from the illness. Inly then did the respirologist suggest that we simply give it more time; that my body may repair itself. After 11 months, the Tracheostomy finally came out!
Not all of those months in the hospital were spent enduring pain, however. I’m ashamed to say that some of them were spent dishing it out. There was 6 month period when I was angry. Furious! “Why did this happen?” I asked the universe. “Why to me? Fuck man! What did I do to deserve this? I’ve done some shitty things in my life but nothing to deserve this! It’s not fucking fair. I’m so scared! I’m so sad. Oh God! What the hell going to happen to me?….GOD? God doesn’t exist! Not the kind of God I want to meet anyway. A god that turns a blind eye to all the suffering in the world. A god that allows horrible things happen to good people. Some jerk god that won’t even end my fucking suffering if there’s nothing left for me in this shitty fucking life. What are you waiting for? Just kill me already. Kill me. Kill me!! KILL ME!!!…..please.”
I took all of that anger and frustration and desperation out on everyone around me, including the people I loved most in this world. I was demanding and argumentative with the nurses, unmotivated and combative with my physiotherapists and doctors, sullen and hyper-critical of my husband, and mean and ungrateful to my mother. I was the worst patient ever! And I’m sure my brave and unconditionally loving family began to dread coming to see me!
I eventually did start an upswing and really make progress, but not before I went through my dark period of about two months. It felt like the minutes run through me like sand shredding away strips of me until I was reduced to nothing. It was a dark abyss of despair and grief and, quite frankly I’m surprised I survived it.
I was grieving. Grieving the loss of my body. Grieving the loss of my independence. Grieving the loss of my life as I knew it. I did not want to face the future. I did not want to face another day of pain and fear and sadness. I did not want to face the grief, fear, and worry in the eyes of my family anymore. I felt like a burden, and was wracked with guilt. My spirituality had been shattered so I had no source of peace and guidance. I was completely adrift and ready to go. So I tried to leave. I tried stabbing myself with a broken and jagged suction wand, but found I could not reach and would not have the strength. Then I tried choking/drowning myself with melted ice chips, but only succeeded in causing a headache-inducing coughing fit and another lung infection. Finally I tried pulling out my Tracheostomy. That was effective, but the nurses came running. After the third attempt (truthfully, I only remember the one) was foiled by attentive night nurses. My family was asked again to sign a DNR order because they felt I ‘obviously didn’t want to live’. I gave up, and opted to simply wallow in my despair and hope that the illness killed me…
…until Dr. Reebye came to visit. Not just for a check up. He told me that my body was recovering and that I’m not longer critical, that I will live. He said it was my choice now how I wanted to live. I was going to eventually be discharged from the hospital. If I was ready by the time I left, I could go to GF Strong where I would begin serious rehabilitation, and eventually move to a group home, and beyond. If I wasn’t ready, I would be transferred to a long-term care facility and fall out of the system, perhaps never rehabilitating. He said he had faith that I could become independent again one day. He said he said he had faith in me, that I could do it. But he said I have to fight, to work hard, and most importantly, to change my terrible attitude, because the deadline is coming soon.
I think I spent a few days thinking about his words, cycling between irritation at his ultimatum, suspicion that Mom called him, fear that I’ll try hard and find out its pointless, and genuine hope that it’s possible. And then I woke up, had breakfast, and asked if I could start seeing the physiotherapists again. The last 6 months in the hospital were filled with determination, pain like I’ve never felt before, and hope. I was pleasant to my nurses and care-aids, motivated with my therapists, engaged with my doctors, and loving and kind to my family. I worked hard through the pain, pushed myself, and kept making new goals.
In June 2011, I transferred to GF Strong Rehabilitation Center and began my next phase in rehab. The downside to being in the clear and on the road of recovery is that the visits drop away. The crisis is over so everyone is getting back to their lives. Mom returned home to Victoria, my husband returned to work full time, and I was left alone to face the next phase by myself. So I dove into it! This is where I stood up using a sling (like an adult jolly jumper), learn to walk again using a walking frame, and stretch and strengthen limbs that had atrophied and contractured during those long months in a hospital bed. The work was demanding and painful, and progress was frustratingly slow, but I attacked it with vigor and purpose. I WAS going to walk again! I WAS going to become independent again! I WAS going to go home!
This is where I got my first electric wheelchair and started taking myself out. I began to feel more independent, more normal. When I was in bed, I was still helpless, like a turtle on its back. I wore a hospital gown, I couldn’t reach the bed controls, get up by myself, or stand by myself. I slept there, washed there, toileted there, got dressed there, and ate there. It was an extremely compact world. When I got the chair, my world blossomed! I could go where I wanted, when I wanted. I was only limited by where my wheels could take me. I could sit in the sun and read my book, get Starbucks at the strip mall and people watch, go down to the ballpark with my husband and take in a game. I finally began to see that there may be a life for me, after all.
And I slept through the night. I was so exhausted after spending the day upright and attending all my therapy sessions that I fell asleep right away and stayed that way until morning. No more sleepless nights. Hooray! The food wasn’t too bad, so I began filling out again. (I was quite overweight when I was admitted to the hospital, but lost 160lbs in the first year, and about 180lbs by the time I got to GF Strong. I was underweight.) Elimination then began to normalize, and I began learning to use the bed pan. (I still wore diapers.) I began taking showers and brushing my teeth. Do you have any idea what it feels like to sit under a warm shower for the first time in a year and a half? Well, I can tell you, it’s an amazing, liberating, utterly cleansing experience! I looked forward to and bravely faced the pain of those shower days because it meant another chance to feel like a normal human being.
The hard work paid off, and in 10 weeks I was strong and independent enough to continue on to the next phase. While I waited for my room to be prepared at the group home, I was transferred to Queens Park Care Center for 8 weeks. What a hideous experience! Most of the residents were elderly, many in palliative care, and were terribly unhappy. The nurses were hard and impatient and treated the patients with little respect and dignity. I suffered several instances of neglect and outright cruelty, and sometimes had to call my husband away from work to help me.
In Oct 2011, I arrived at Connect Communities, a group home for people with Acquired Brain Injuries. There were six people living in the home with 3 caregivers at any given time except at night. Meals were freshly prepared, there was a gym, a lovely yard with a garden where I grew flowers and vegetables, and all the amenities. It was the home where I made the most improvement and allowed me to enjoy the life I have today.
This is where I stood up with no assistance for the first time. I learned to walk again, first with massive cast boots on, clinging to a walking frame, then with ankle braces, clinging to the physiotherapist, and finally in plain old runners, holding on to nothing. I practiced walking every single day, without fail, until I could walk around the house easily and with no supervision. I religiously stretched my contractured shoulders and neck twice a day to improve my range of motion. I worked in the gym twice a week, strengthening my legs and arms. I learned how to organize my own meds, make my own coffee, find my way to appointments through Handi-Dart, and navigate my way in the world without a companion. This is where I finally, after 2 1/2 years, learned to use the toilet again and stop wearing diapers! Hallelujah! The first time I managed to squeeze out some pee while sitting on the toilet, I cried. Just sat on the toilet and bawled. That simple private act healed something in me I didn’t realize was broken until then. I was whole again.
While at Connect Communities, I had the surgery on my right hand. Now my hand is open and facing toward me so I can use it as a helper hand. I had to learn to use my left hand as my dominant hand and writing hand. This wasn’t as difficult as it may seem because I was forced to use my left without help from my right for two years already. I also had a right shoulder replacement in the hopes that it would relieve the pain from the contracture and improve range of motion.
In June of 2013, I moved into my new Family Care Home with Mira and her lovely family. I have my own suite, with a bedroom, bathroom, living area, kitchenette, and a large patio and yard where I grow flowers and vegetables. All the amenities are within wheelchair driving distance, and Mira provides me with cable, Internet, Netflix, and WiFi. Since arriving here, I’ve continued to push myself, practicing walking on the treadmill, stretching my shoulders, and most importantly, always trying to do things for myself before calling for help.
This strategy has helped me improve my life in all kinds of ways, from my independence to my ROM. And being willing to try new things has allowed me to learn to use transit, to travel the ferry to visit my parents, to get into a car, to go to dinner without my chair, and to have the confidence to go anywhere in this world and do anything in my imagination that I set my goals for.
Today, my back and neck are twisted, I cannot raise my arms above my shoulders, I can’t walk for long distances, I cannot make a fist with my right hand or carry a cup of coffee, I have chronic pain in my shoulders, hand, knees, foot and hip, I have neuropathy in my lower legs and feet, I have constant daily headaches, and I have chronic spasticity in my abdomen. On the other hand, I can turn my head from side to side, I am able to reach most things in my own environment and people are usually very helpful, I have my wheelchair and I can stand and walk despite the doctors’ prognosis, I am able to use my right hand, and I have meds and cannabis to manage the pain and spasticity.
Don’t get me wrong, I didn’t just suddenly turn a corner while hospitalized, and forever lived a joyous existence after that. I have had extremely motivated moments where I’m inspired to push through and work hard. I’ve had days filled with joy and hope for the future. But I’ve also had dark sorrowful times when I just can’t stand it anymore. And there are days when I’m furious, raging at god, at the universe, and any deity that can hear me. But this is just life, is it not? And it does go on, whether you’re on board or not. The universe does not stop turning, the world does not stop spinning, people’s lives do not stop marching forward because I’m in pain. When I accepted life as it is now, instead of simply resigning myself to it, and dreaming of all the things I can never do, I began to accomplish more things than I thought possible.
Today, I live almost completely independently and autonomously. I run a Facebook page dedicated to celebrating the “giggles and gripes” of life with a disability. I write stories about my journey, many of which are published in The Mighty, and I am currently writing my first play called Riding the Dragon. I have a BFA in Theatre, and in 2022, I returned to the Theatre community and enrolled in the Realwheels Acting Academy, a 3-year pilot program for disabled actors. In 2023, I was the Assistant Director for the Arts Club’s Teenage Dick, which has reignited my passion for directing. I am living a fulfilling and creatively stimulating life. In fact, to be perfectly honest, I believe my life is better now than it was before I got sick.
