Some Thoughts About Living With Disability Caused by Lyme Disease
Disability – physical and mental. Such an ugly word, conjuring up thoughts of being “less than”, “insufficient”, “not good enough” and “incomplete”. At least, this is how I sometimes think other people see me. Partly because of the looks I got in my twenties due to my strange gait, before I resorted to the use of a power wheelchair in my thirties, and partially because of the reception I received when looking for work appropriate to my skills and qualifications in the job market.
Let’s face it. Promotions and fulfilling work for the physically disabled, to the uninitiated or those without a healthy network of well-placed business people, are confined to positions such as receptionists, secretaries, call center agents and so on. It’s as if people see a physical disability and assume you’re your capabilities are compromised. I used to be a secretary, so that’s not my point, but I didn’t expect to qualify with a B.Com Honors, only to be told I wasn’t good enough for promotion.
Times have changed. I’ve moved on. No longer able to cope with the formal working environment, and prompted by an extended bout of diarrhea (funny, but not that funny) brought on by anti-fungal medication at forty-eight, which made a difficult environment even more unbearable, I took a leap of faith and “retired”.
My pension was pitiful. I spent it all on a failed start-up business online. Starting again at forty-nine wasn’t easy but it seems most of my life has been about starting over, so I have lots of experience. One would think that with a business degree, I should have known better. Hope and enthusiasm however, supplanted reason and I joined the crowds of hopeful failures that had preceded me. That’s ok.
I also don’t come from a family heritage known for their emotional maturity. Not that I am particularly immature in this realm anymore at fifty-three, having accumulated some sense and wisdom over time, so I like to think that I have now learned from my mistakes. And, there have been many. I don’t think this separates me much from the crowd. How else do we learn and grow?
Where did my journey begin?
I wasn’t born disabled. I was born a healthy girl in a rural area of South Africa in the 1960s. As with most children raised so close to nature, I reveled in it. Muddy feet from puddles after the rain. Collecting earthworms, tadpoles and crabs from the creek behind our home. Soaking in the pervasive scent of chincherinchees that adorned the massive field adjacent to our house.
Trying to avoid the smell of cow pats from the field at the front in the heat of summer, while relishing the sensation of stepping into fresh, grass green cow dung along the road to the town’s swimming pool with its murky brown waters. Scary to the point where my imagination conjured creepy crawlies that lurked beneath the surface, overcome by the promise of play in its cool brownness. Receiving a walloping from Trevor after he discovered Robert and I red-eyed from having experimented with cigarette smoking (purchased with empty cool-drink deposits back in the day).
Life was glorious. I recovered from a seizure provoked by a high temperature at age one, seemingly with no related side-effects. I experienced a few heavy nose bleeds in the heat of the summer under the loquat tree and some bouts of tonsillitis before age six. Nothing to be concerned about. I was too busy checking to see whether the chameleon I had acquired would turn red if I left him on my dressing gown hooked behind the bedroom door.
Death does not become her
Our father passed away at forty-five. “She is too young to understand death”, one of the old ladies said, who was hosting a get together to support mom. I was six but I knew he was never coming back.
Mom was left to raise five kids on her own. No small task with her lack of skills. We moved to a small town about 200 kilometers away so that she could take up a post as a hostel matron. There, I first learned what fear was. Typical of a hostel situation in a farming area, some of the older girls had to stay on for a few days before their parents could collect them to go home.
Bored, these older children (around thirteen or fourteen), suggested we create a Ouija board. The spooks walked the passages that night. I heard them. The other girls heard them. Never again did I sleep with my head close to an open window. The innocence of my childhood had been altered. The world was no longer as friendly as I had believed.
By all accounts, I was a very healthy, active, fit child. We moved to Queenstown, another small town in the Eastern Cape province of South Africa in the early 1970s. Mom had found a better paid job as a hostel matron. My youngest brother and I were placed in hostels linked to the junior schools that we attended.
Even there, we frequently went out on nature walks. Either over weekends or as part of school activities. One day, I came down with a high temperature and full body rash. It was assumed that I had contracted German measles. This episode followed a year after I had been confined to a dark room with regular measles for a time in Frankfort.
Again, we moved a year later for mom’s work. I was treated for anemia because I had been falling asleep during classes. Three years down the line – another full body rash and temperature. This was treated with cortisone.
Several more years passed. At around fourteen, I began to experience muscle weakness, despite being involved in playing tennis, netball, swimming and walking over five kilometers a day.
“What do you want to do when you leave school”, the medical specialist asked. “I want to be an actress or go into modeling”. The look on his face struck fear into my heart. I knew that none of these career paths would materialize.
I stopped dreaming. I didn’t know whether I would live beyond twenty. More time followed. I became progressively weaker. So inexorably slow in the beginning that it was almost unnoticeable until another full year had passed. Fear of the unknown diverted my attention to boys, parties and booze where I sought unfulfilling comfort.
Looking for love in the wrong places
While looking for love in all the wrong places, partaking in unprotected sex and cheating up a storm, I met my first husband to be, at nineteen. He completed his studies in a nearby city. I was motivated to find lifts to visit him every other weekend to pursue this budding romance. After completing his studies, he found work in the Western Cape. I followed soon after. We bought a home together and married when I was twenty-nine.
Plagued by my insecurities, his parents’ disapproval of me, cemented by disapproval of myself, this relationship was pitted with obstacles. Soon, we moved back to the Eastern Cape for work and to be close to his family.
Tragically one night, two days before Christmas when cleaning his gun, he let off a shot that entered his brain and died several hours later. We had been married for a brief three months.
A fork in the road
Over the previous decade, I had become interested in alternative therapies and positive thinking. After becoming widowed, my quest to find answers to my declining health set in again. I found someone in a neighboring town who dealt with energy treatments and made an appointment to see him.
With his back turned to me and while I was lying on the treatment bed, he asked if I could afford his treatments. “My husband’s life insurance paid out, so yes, I can”. As soon as the words escaped my mouth, my instincts told me that I had said the wrong thing. The atmosphere altered subtly in the room.
I ignored this incident. We began a relationship and were married two years later. On April Fool’s day (again, not funny). I deliberately ignored all the red flags, so desperate was I for love. This desperation was encouraged by having been raised by a mother incapable of showing emotion. A strong woman who sacrificed much, who had herself been no stranger to pain, who had suffered nine miscarriages and lost her husband in her late thirties. I don’t blame her. I mention it simply because I vowed never to be as judgmental and critical as she had been, knowing the damage it caused to my self-confidence and esteem. After her death, I came to realize that the apple indeed, does not fall far from the tree – a time for more change and growth presented itself.
My second marriage had some high points, such as driving across southern Africa for six weeks at a time. He got a Ph.D. out of me, cheated and generally treated me like crap. But not before we went on a trip to Madeira and Thailand together. He moved to Madeira permanently shortly after we separated, was supposed to return for a divorce hearing that never happened and life went on.
Picking up the broken pieces of my heart and life, I moved to the city of Pretoria, found permanent work between year-long horrible jobs and a bunch of other occurrences in between. Here, at thirty-eight, I was finally pointed in the right direction regarding my health.
After years of trips to government training hospitals, with diagnoses of various forms of muscular dystrophy after muscle biopsies (where the surgeon cutting into my upper thigh complained that his work was more difficult because he had to cut through the fat (I didn’t weigh more than 144 pounds at 5 feet and 8”), I found an answer to why my nerve and muscle health had continued to decline.
Q Fever (Coxiella burnetiid), two separate Spotted Fever infections (Rickettsia) and an accompanying mycoplasma in the form of C. Pneumonia.
The cows from my childhood, unpasteurized milk and a love of nature had “come home to roost”.
Devastating to learn that early prescriptions of simple antibiotics could have saved me a world of emotional and physical pain (not to mention the loss of economic benefits); relief that I had finally found the answer, or a part thereof, to my physical condition.
Eight years of antibiotic treatment followed, for two weeks every month. After this period, I began taking cannabis oil. This was the one treatment that reduced my ALS/ALT liver indicators to within the normal range and finally eliminated Q. Fever from my system. I stopped using the antibiotics as I felt their use had come to an end.
My optimism about this antibiotic treatment had been high, reasoning that once the infections had been eliminated that my somatic nervous system and muscles would begin to recover. Instead, I continued to weaken progressively to the point where I could no longer bear the challenges presented by the corporate working environment.
Because I was well-groomed, looked decent, some comments revolved around my taking chances when a manager felt I was taking too much leave. The ignorance. I was in a permanent state of exhaustion. Antibiotics quickly resolved my crippling three-day headaches and improved my energy levels though. Prior to taking this medication, I had gone to sleep exhausted and awoken in the same state, not being able to get any decent sleep in, due to liver toxicity (lab results indicated beginning stages of liver disease). Headaches had lasted for three days at a time, with codeine pain tablets offering little to no relief. Neither had morphine drops provided relief from severe joint pains in my teens.
Upward and onward, or so I thought!
A bachelor’s degree, certificate in business management and introduction to programming were accomplished through a veil of exhaustion prior to beginning my treatment with antibiotics. Here, I had hoped that furthering my education through extremely trying circumstances would be rewarded. My hopes were dashed.
Some other romantic flings took place while in Pretoria. Possessing little self-love and after resigning at forty-eight from my full-time employment, I met a man online – something I had vowed never to do. My search for love was nothing if not persistent. Being pressed for financial resources and having been asked to move out of my home for over ten years to make way for my landlady’s aging mother, I repeated my penchant for risky behavior. A nasty pattern had developed. One that was soon to be resolved in the most unpleasant manner. Of course, it is only through our self-inflicted pain that we must learn the hard way if we fail to discern an easier route. Stubborn!
After three months of chatting online and one face-to-face meeting, I convinced myself that I was in love with this man. I moved to a small town four hours’ drive away from the city, placing eons of distance between myself and my family support.
Three years of hell followed. A barely functioning alcoholic with PTSD and anxiety disorder, I was subjected to hours of whinging and whining about how much pain he was in. Physically and emotionally. I recognized this. It wasn’t that I was a monster but there was only so much support that I could offer to someone who had no interest in helping himself. Hindsight informs me that he probably wasn’t in a position to help himself either. Neither was I. Resentment rapidly set in, with me reasoning that he could desist from trying to destroy me with his narcissistic behavior even if unable to help himself.
“Bringing home the bacon” fell solely on my shoulders once he resigned from his work, a mere six months after moving in together. Further horror followed as I discovered that he was cheating on me with an old ex-girlfriend. “I’m not having sex with her”. It was pointless debating with an alcoholic. “Who better to take advantage of than a disabled woman”. Indeed!
I recall one year on my birthday, that he stood at the edge of my bed (we had long since been living in separate bedrooms), where I asked him for help to get up. By this stage, I was still able to get myself into a fetal position but at times did not have the strength to maneuver my butt up onto my feet and then reverse wiggle into my wheelchair to get out of bed, from which point I could help myself. He stood there watching me struggling. I could feel the smirk on his face.
Lies, cheating, betrayal, theft. It continued until one day he accused me of doing witchcraft. His extensive alcohol consumption seemed to be causing neurological damage as he sat in his chair, grasping his legs, complaining about shooting pains. He rushed out of the house, stopped a car in the street, jumped in and they took him to the local police headquarters. He returned the same evening, began an elaborate, disturbing display of pretense at shooting imagined enemies until I called security to remove him. By that stage I was in fear of my physical well-being had I allowed him into the house. He spent the night screaming in the jail cell until they finally called an ambulance to remove him.
His intelligence, manipulative, narcissistic behavior had finally caught up with him. He left for Pretoria the next day and died three months later – assumably from an aneurysm, encouraged by high blood pressure, not eating and a bottle of vodka a day. At my expense, both physically and emotionally as I had to work twelve hours a day to keep us both going.
Courageous or a survivor?
He died. My mother passed away a month later in 2018.
For all her faults, I began to appreciate that I had never granted her credit for all the challenges that she had surmounted. The fault finder had taught me well.
With the man of the house gone, the predators set in. A neighbor took to shining his cell phone light through my windows at night, opening and closing these and the garage door until finally I had enough cash to have the lock changed. Sexual innuendos, filthy hands through the burglar bars in attempts to steal my notebook. “^&%^” you asshole, I scream from my bedroom at 2 a.m. Seconds afterwards I hear his front door closing. I check the flimsy strip of the burglar bar the next morning. It is slightly bent, proof that this attempted invasion had not been a vivid concoction of frightened imaginings.
I had to employ two caregivers. I can no longer get out of bed. Every self-imposed disaster or trauma in my life had weakened me further. Help with dressing, a full bath twice a week when my caregivers swap places to sleep in. They don’t have the strength to lift me alone and I don’t have the financial resources to purchase an electric hoist.
To top things off, I lost my regular writing work several months ago. Personal loss caught up with me and I lost my cool. Not an infrequent occurrence when battling with low energy levels and the need to make monthly targets to survive. Not unreasonable after the loss of a loved one either, I tell myself.
I lift my right hand with my left to bring a cup of tea closer to my mouth. A straw extends my reach as this devastating disease/infection has finally reached my shoulders. Stage two shoulder dislocation. Stooped over my keyboard, my head weighing heavily on my shoulders, I am tired.
I lie in bed at night, wondering how much longer before my neck muscles give in. How much time do I have left before I am reduced to a “talking head”?
And yet, I am more than a disability. I have survived the destructive consequences of an intelligent microorganism for over fifty years. Not the rapid decline induced by the Lyme infection, but the slow inescapable decline generated by tick bite infections that remained undetected for three decades. Disability is not pretty – to outsiders or to those who endure its ravages. It is a good teacher though and I am still learning to love myself, to take credit for small victories.
There is hope in these old bones. More than that, there is a will to thrive. Mom didn’t raise a quitter.
Hope truly does spring eternal from the souls of those who have faced adversity (or, they give in and let life consume them. Whole).
Some have called me courageous. Others, an inspiration. I don’t know what that means. My mother raised a survivor. That’s what I’m trying to do. I am physically disabled but continue to make concerted efforts to be a contributing member of society. Even in times when isolation threatens to overwhelm me, I develop cracks, but life forces me to forge ahead.