How Illness, Hospitalization and Disability Transformed My Life

In 2009, I developed a rare illness called Bickerstaff brainstem encephalitis (a variant of GBS). Overall, I spent three-and-a-half years in medical facilities: six weeks in a coma, 18 months in bed in the hospital, and two years in rehab and group homes. By the time I finally moved into my own suite in my caregiver’s home, disabled and a wheelchair user, I was not the same person I used to be. In fact, virtually my entire personality had changed, and my life has been radically altered in all areas.

Physical:

While I was non-disabled, I took my body for granted and was rough on it. As a child, I played and practiced sports hard, flinging my body about with little regard for its safety. As a teenager and young adult, I took Tae Kwon Do and played softball. My theatre training was often long hours with little sleep and physically exhausting. I smoked, drank heavily, ate poorly, and tried a vast range of substances. Like most young people, I felt invincible, with no care or forethought of the future of my health. Although I was strong, flexible and graceful, I doubled my healthy body weight by the time I was 38, and I was in mediocre physical health from alcoholism, poor diet and lack of exercise.

The illness and brain injury resulted in a number of issues that contributed to my disability, including dizziness, balance issues and double vision. But the bed confinement and hospitalization also contributed to my disability. I developed joint contractures, kyphoscoliosis, and muscle atrophy that limits my strength and range of motion. As a result of all this, I move much more slowly and carefully to avoid stumbling, falling, injuring myself or knocking things over. I am no longer reckless with my movements or lifestyle. I am also much more aware of the future of my health, recognizing now that physical health is never guaranteed. I am acutely aware of my current physical condition and am terrified of returning to the state I was in the hospital.

Mental/Emotional:

I was diagnosed with depression in my mid-20s, and for most of my life, it has been a massive source of distress, leading to major episodes and suicide attempts. I also have OCD, but for most of my life, the symptoms were fairly mild and I seemed to manage it well. My passion and sensitivity opened me to many moments of joy, but many more moments of angst. I possessed a great deal of empathy, compassion, and a strong sense of justice. I volunteered at a crisis hot-line, was an animal rights activist, and was constantly compelled to “fight for the underdog,” regardless of how many times I was left “holding the bag” in the end.

While I was ill and hospitalized, I spiraled through long periods of grief, anger, fear, and depression. I developed delirium and post-intensive care syndrome. I suffered several experiences of callousness and outright abuse from nurses and care aides, and developed anxiety and PTSD as a result. These experiences worsened my pre-existing mental illnesses and added a couple more. The emotional lability that resulted from the injury to my brainstem never quite resolved itself, so I have a tendency to “overreact” emotionally, and the PTSD manifests most often in either tears or rage. Because of the numerous embarrassing and hurtful (to others) moments these behaviors elicited, I have a tendency to avoid conflict or “harden” myself. I did not return to volunteering at the crisis line because I no longer have the patience, yet watching the news (especially in 2020) often leaves me in furious tears about the suffering and injustice in the world.

However, out of necessity, I spent a great deal of time addressing my mental health and learning to cope with my emotional responses. I have become much more circumspect and mindful not only about how I treat myself, but about how I treat others. My depression still exists, but staying on the antidepressants and engaging in activities that are fulfilling for me and helpful for others has given me purpose and satisfaction. I have not had a major depressive episode in about a year and a half.

Social:

I used to be extroverted: fairly open and outgoing, freely and candidly sharing my feelings and opinions, and enjoying the limelight whenever possible. I didn’t make friends easily, but I had no problem meeting new people, introducing myself to strangers, or entertaining people at parties with jokes and stories. I enjoyed the company of others, and rarely turned down the opportunity to party. Theatre and the Arts was my area of study at University; I spent many hours on stage in front of hundreds of pairs of eyes, and enjoyed every minute of it.

While hospitalized, I endured thousands of hours laying on my back in a narrow hospital bed, accompanied only by my own thoughts. I grew accustomed to entertaining myself by listing, counting, daydreaming, philosophizing, meditating, mental games, anything to occupy my mind while the hours, days, weeks and months droned on. I would pick a debate topic then argue both sides or, because I was severely vision-impaired, try to guess which nurse/doctor/aide was in my room by their scent and sound of their voice. I slowly began to withdraw into myself, growing more and more comfortable with the slow silent solitude I had no choice but to fill for myself.

Today, a decade later, I am a much quieter, more solitary individual: a “lone wolf.” Aside from my husband, who is my best friend, and those few who I have met online, I have no friends. I have difficulty meeting new people, I find crowds suffocating (especially crowds of standing people, as I use a wheelchair), and “small talk,” for me, is tedious and dull. Though I know being friendless probably isn’t healthy, it hasn’t really bothered me so far. I truly prefer my own company, and I spend much of my time happily engaged in activities that are creative and introspective rather than physical or social. Because of the exorbitant amount of time I spent isolated in drab, quiet spaces, I am easily overwhelmed by too much activity and noise. I avoid crowded public spaces, wear earplugs outdoors, and regardless of the weather, wear sunglasses to block the light’s glare.

Spiritual:

I was raised Roman Catholic. Though my family was not devout, my sister and I attended Catholic school, completed our childhood sacraments, and went to church on religious holidays. During teenage hood, having begun to learn about other religions and discovering inconsistencies and contradictions in Catholicism, I became agnostic. I still believed a God was possible, but that it was impossible to know for sure, therefore no religion was “true.” In my mid-20s, I discovered Paganism. This earth-based faith appealed to many of my basic values and ethics, so it fit well for many years. I celebrated the Pagan holidays, observed the moon cycles, meditated on the three aspects of the Goddess, and tried to live a life respectful of nature and all life forms.

Then I got sick. I came precariously close to death on several occasions and endured enormous amounts of pain, debilitation, and mental/emotional suffering. The coma was a long void, occasionally punctuated with brief moments of hazy awareness floating in a bubble of mist that evaporated as quickly as it had formed. When I was on the verge of death, there was no white light, no welcoming figures, no sense of peace. There was just nothing. After the coma, as I lay in my hospital bed, sweating, itching, burning up, delirious, wracked with pain and spasticity, I prayed, I meditated, I called out to, and I begged both the Christian God of my childhood and the Pagan Goddess I had come to respect. The relief (or release) I desperately needed never came. The peace I prayed for never arrived. None of the gods and goddesses of this universe came to my aid. I was frightened and furious and utterly inconsolable.

Today, I am Atheist. Having survived and somewhat recovered from such a torturous and unpredictable experience with the help of science, medicine, human support, and my own strength and courage, I do not believe there exists anything beyond this existence, this life. Besides, if a “higher power” does exist, I cannot possibly put my faith in a being that saw my suffering and had the power to intervene, but chose not to.

When the topic of a god and spirituality comes up in conversation, I have learned to keep my thoughts to myself. It seems that most people, while they may tolerate other’s beliefs in a faith other than their own, they have a much harder time tolerating when someone does not believe in a higher power at all. I see the look of sadness in people’s eyes when I share that I don’t believe in an Afterlife. I’ve heard all the suggestions of ways God might have worked his unrecognized magic through my rehabilitation. I sense the frustration when I counter those suggestions with a realist perspective. So, I often choose to say very little when the topic arises. I am at peace with my conclusions and have grown into a better person as a result of them, opting to live this life as fully, ethically, and collaboratively as I can, while I can.

Not necessarily a bad thing:

Illness and hospitalization, followed by disability, has radically changed me. If you knew me before 2009, you would not recognize me today. I used to be an extroverted, outspoken, socially engaging individual who fought for the underdog and listened patiently to everyone’s woes. I am now an introverted, circumspect, hypersensitive individual who grows impatient with others’ “bitchin’ and moanin’,” yet falls apart over the world’s injustices. Despite my mediocre health, I used to take my body for granted, confident that it would withstand the abuse I subjected it to and perform any task I asked it to. Now, I move slowly and painfully, acutely aware of my vulnerability and fearful of my future health. Unbidden, my mind runs scenarios of terrifying events where I’m rendered helpless. Old OCD symptoms have grown worse, and I’ve developed a new skin-picking compulsion that is painful and disgusting to me. PTSD still rears its ugly head now and again, and each time is as shocking and upsetting as the last.

However, I used to be a severely depressed, suicidal, unemployed alcoholic whose marriage was failing. Today, I am addiction-free, relatively content and, because I’m no longer able to work, I have been free to find outlets for my creativity, empathy, and sense of justice that fill me with a sense of purpose.

During my illness and hospitalization, my husband stuck by me, spent hours hanging out with me, talking to me, reading to me, entertaining me, and running countless errands while I lay in my hospital bed. Old resentments faded away, and the reasons for our separation seemed petty under the circumstances. We developed a much stronger bond, and our marriage bloomed. During hospitalization and rehabilitation, I was forced to avoid alcohol for three-and-a-half years.

During that time, I experienced a tremendous amount of trauma and personal growth, and in the process, healed from many of the issues that exacerbated my alcoholism. Today, I enjoy alcohol in moderation and never in excess. Part of the reason is that I do not want to exacerbate my physical challenges with balance and coordination and end up injuring myself. But mostly, it’s because I’m no longer driven to drink the same way, the same amount, or for the same reasons I once did.

So, yes, this experience profoundly changed me in ways I am not comfortable with, and some of those changes could have been avoided with more compassionate care and awareness. But they also changed me in ways that are healthy and joyful. Some would call these “blessings” or “silver linings.” I prefer to think of them as Phoenixes or new Stars: sparks of life born from a type of sudden death.