When I had my rupture I knew and thought it was rare to have one at such a young age. I was even told that I was apart of the .04% of people who experience a rupture under the age of 26. After joining a few Facebook groups and forums, I then knew it wasn’t all that rare, although I hadn’t yet met a survivor who was a similar age.
It wasn’t until I received an Instagram message from Maddy who connected via an aneurysm awareness hashtag. Maddy is a survivor from a rupture at the age of 23.
She, like myself, has found it difficult to connect and find others who have experienced this traumatic invisible injury. As she put it, ‘it is very rare to meet fellow survivors’ and ‘it is a very isolating experience to live’, which I couldn’t agree with more.
Maddy’s Story (in her own words):
My journey started just before Christmas in 2012. I was on my way to work in Burnaby hauling a heavy bag of gifts over my shoulder. As I was jogging up the stairs to catch the skytrain, I suddenly felt a sharp pain in my neck, and a warm thick liquid feeling go down the right side of my face - like having an egg cracked over my head.
I got on the train, and my instincts told me something unusual was happening, and to keep track of my symptoms. I took out my phone and started writing down what I was experiencing and how I felt. I knew what the symptoms of a stroke were, so I turned my back camera on and looked to see if my mouth and eye were drooping, although they were not. My left arm was also fine, though I knew that the symptoms we are taught to look for are primarily based on studies of men and that women may present very differently.
I arrived at my stop, not feeling ‘bad’, but not feeling ‘right’. My office was not far away, and once I made it there, my colleagues greeted me happily - it was almost the last day of work before the holidays. I said that something was wrong, and they could tell as I wasn't quite myself. Many speculations went around as to what it could be, and I mentioned maybe I was having a stroke. My colleagues noticed my speech was slightly slurred, and a coworker did a visual field test which left me feeling like I was falling into a black hole. A coworker recommended I call the nurses hotline and then head to the ER.
While on the phone with the hotline, I was asked for my care-card. My head went below my heart as I bent over in my chair to reach my purse. I sat up, and my whole world went dark as a violent shock of dizziness and nausea overtook me. My body felt like it was being spun around in a Gravitron ride - centrifugal force spinning me with no way to stop. The phone dropped from my hand and I made fists, clinging tightly to air while groaning - willing the invisible rotations gripping me from the inside-out to stop. I knew I was going to start vomiting, and pushed myself onto the floor and grabbed my garbage bin just in time.
An ambulance was called, and my boss entered the office and stated that I was likely sick with Norovirus or having a brain aneurysm based on my symptoms. I’m uncertain what information was given to the 911 operator and paramedics. Even though I had notes in my phone, and my boss had said ‘aneurysm’, it seemed that no one thought it possible I was actually having a stroke.
I was taken to Royal Columbian Hospital, which is also the top neuro hospital in the lower mainland. Even though I had written down my symptoms, it took the doctors hours to figure out what was going on. They had initially proclaimed a diagnosis of vertigo - unpleasant but not deadly. My fiancé John (who had arrived at RCH) was told everything would be okay, and to go get a coffee. When he came back, I was gone. A Dr found him and said that my CT scan showed I was hemorrhaging near my brainstem and that my situation was now critical.
I experienced a stroke caused by a rupture in my 4th Ventricle, a diamond-shaped area in the Brainstem (which controls your autonomic nervous system, such as heart rate and breathing). It is connected to the rest of the ventricular system, which creates and transports essential, cleansing cerebrospinal fluid around the brain and spinal cord, bathing the central nervous system. Doctors were unable to perform any type of surgery to stop the bleeding - it was a “wait and see” situation if I would survive, be in a vegetative state, or have severe deficits.
I have no cognitive memories during this time frame and underwent various tests, MRI and CT scans. A decision was made a few days later to drill into my skull and insert a drain to help relieve the pressure in my brain, to avoid hydrocephalus. I believe the Drs and nurses were doing their very best to help me survive, and I am deeply grateful for their care. There is still so much unknown about the brain, and they did what they knew to help me survive (though I really wish they didn’t shave an inch of my hair from my forehead - resulting in infuriating spiky bangs that took years to grow back).
I stayed at RCH through Christmas and New Years into January - close to 3 weeks. While I did not suffer from headaches or intense pain, I lost my ability to balance and walk, had thermoregulation issues (I felt very hot), diplopia (double vision - I wore an eye patch), an aggressive sweet tooth (healing brains need glucose), Emotional Lability, audio filtering issues, thought everything was hilarious (the statement “Johns hair is brown” would send me into a fit of giggles), overall Ataxia, and countless other invisible symptoms. I was a pleasant, patient “patient”, but with a background in holistic health and wellness, I knew staying at the hospital was not conducive to healing. John slowly convinced my Drs that he would be able to set our home up appropriately so I could leave on a ‘day-pass’ - living at home but coming back to the hospital each day for check-ins. This way, I could rest with quiet, dark, and comfort, and eat nourishing whole foods at home as much as possible. Hospitals are great for emergency/acute care, but are not conducive for healing; they are bright, noisy, full of harsh chemicals, stale air, and processed food.
Once I was fully discharged from the hospital, I became an intensive day patient at GF Strong to do physiotherapy, occupational therapy, speech therapy, art therapy vocational counselling, psychology, and more. I enjoyed the majority of my time at GF strong - my passion for wellness, desire to learn, self-awareness, and ability to communicate my bodily sensations made me an excellent rehabee. I appreciated the care and support I was given by my team, and they provided me with the quality of consistency during a turbulent time. When the rug is pulled out from under your feet and your whole life stops, having people you see every day helps save you. Melanie, Morio, Karen, Alison, Tara and others held me while I held myself. I was nicknamed the “Crying Robot” which is what happens when you have Emotional Lability and Ataxia - you cry over literally everything while being awkward and uncoordinated with intense anxiety as you rapidly calculate the safety of every. single. movement. inside of a body that is a stranger to you.
I worked intensely every day and on my own time. No one worked harder than I did for myself. Every part of my life was rehab.
Though I had a great initial ‘recovery’, I was unable to return to work for 2 ½ years as I slowly regained capacities, learned to compensate/adjust for my disabilities, and processed the ‘new’ version of myself (which is still a practice - healing is not linear). I was not assigned a neurologist, nor asked to come back for follow-ups (beyond an MRI a few months later, where my neuro-surgeon asked why I was on anti-seizure medication, and I reminded him that he was the one who prescribed it). I self-advocated to get further care (and continue to do so today) to ensure I got support while living with a brain injury and invisible disabilities. I opted-in to every program or service offered at GF Strong, and pursued alternative, whole-istic modalities and care such as Meditation, Body Talk, EFT Tapping, Breath Work, Acupuncture, Cranial Sacral Massage, and more (and continue these practices today) . You never know what your bodymindsoul will respond to; what will ‘click’ and activate deeper healing. I eventually did a return to work program with my long-term disability provider, Dr, and employer.
I feel very lucky to have a fairly supportive family doctor, but see many gaps in our health-care system and society to support those living with invisible disabilities. Responses to valid questions and concerns about ongoing or new symptoms are often flippant, dismissive, and arrogant - such as “consider yourself lucky”, “well, you look great”, “everyone gets that sometimes”, and “count your abilities, not your disabilities”. This filters out into society as well, with friends, family, and colleagues assuming that since you “look normal” and can seemingly do “all the things” that you are 100% recovered, are never struggling or suffering, and no longer need support. In an attempt to accommodate the (dis)comfort of others (because we are taught to look away from or attempt to ‘fix’ pain), the truth of those living with invisible disabilities is overshadowed and swept under the rug, as we are expected to “get over it”. This leaves us in quiet despair, feeling unheard, unseen, unvalued, and distrusting. Any ‘life’ issues/challenges that arise are exacerbated due to my disabilities - layered in a complex web.
While I have gratitude for the post-traumatic learning and growth, there is also the reality that I live with symptoms every moment of every day, and have to work hard to maintain my wellness through the trauma, losses, and grief of a major brain injury. The deep isolation and the loss of independence within this injury is the most harmful, which is in huge part due to systemic/policy issues and lack of support in our society. I believe we heal in community and have forgotten or ignore the inner wisdom of how to support and hold one another. I am ever thankful for the healing conversations, experiences, moments, and bonds I have with others living with invisible injuries, illnesses, and losses - my dear friends Amanda, Richelle, Sean, and Andrea. I believe that ‘everything we need is within us’, but we can only access ‘everything’ when we are in community. Soft places to land and rest our weary heads and weary hearts. The safety and ease to just be. Nothing to fix, nothing to change; just to be held, loved, and seen as whole. This allows us to recharge and replenish - to become renewable within, bolstering our ability to hold ourselves.
I have the privilege of working part-time to prioritize my wellness, though, like many others with invisible disabilities, I am very cautious in mentioning my disabilities to a new workplace (and to many individuals, especially those unable to hold space with compassion) in fear of ableism, mistreatment, judgement and rejection. I’ve noticed that anyone I know with a chronic illness/injury, or invisible disability work from home regularly, or have started their own business to ‘participate’ in the workforce. Without the visual cue of a physical disability, it is challenging for people to simply believe us when we speak up about our needs. Support is sparse, and self-advocating can be demeaning and exhausting.
I continue to live with grief and gratitude, pursuing the fullness of life. I am always whole, and I am always healing.
As Maddy put it, we are unicorns. We are unique, a rare occurrence that is also vulnerable.
Thank you Maddy for reaching out. You are not alone. I am thankful to have met you and I look forward to working together and bringing awareness to the forefront of peoples minds.
For more information: https://www.atimminsphoto.com/awareness