If you have NOT been touched by a chronic illness, please take a moment to reflect on all that is going on around you. I have only been “out of the loop” for a few years; my tour of duty is minimal compared to most with this disease, but it did give me a taste of isolation and how inaccessible the world still remains for the disabled. At any moment one of us is next to you in a store, restaurant, or clinic. We are tired, sore, and likely panicking. Perhaps we are standing in a long line-up, reeling from POTs and deciding whether passing out is the best option or to simply go home and try again the next day. Everything feels like an assault yet we appear “normal.”
A close Lymie friend had been out of society for sixteen years; his only contacts being nurses and doctors and neighbours. One day he made the comment, out of the blue, “You know, the only people I have seen on the outside this decade have hurt me. I haven’t visited or shopped or had dinner with anyone. I have been in my room or at a clinic where people poke and prod me with needles. Most of the human contact I have is pain-infliction.” For the first few years he spent time in his bedroom, meals delivered on trays (liquid meals at that). He had help getting from bedroom to living room. He was outdoors for a matter of a few seconds, to go from attached garage, into the car, to the front foyer of the hospital. After gaining strength by practicing stairs and pacing in the house, he one day opened the front door to descend down the porch steps and to the street; a big feat. He almost passed out. The sky seemed so high, the sun so bright, the world so overwhelming. Vertigo set in just from the sheer expanse of sky and horizon. Then a few months later, with some newfound progress in strength and stability, he wanted to purchase his own shoes and had to learn what a debit card was and how to use one. His hands shook from anxiety. How does one work this machine? What if I push the wrong buttons and am ridiculed by the clerk? There are all sorts of things that people learn naturally with age and experience, but Lyme puts a person in a sort of time warp, not unlike hiding in a bomb shelter for a decade and emerging to a different, advanced world. These people, if they make it out, feel subhuman and out of place. Everything is new and frightening and overwhelming.
In some ways this journey to health is like war. There are many battles that make up this war of attrition. One step forward often followed by a push back of several meters. The defence mechanisms of the infections are often more intelligent and more advanced than our weapons of destruction. And when a certain concoction of tactics like two antibiotics mixed with cyst-busting herbs does make a kill, the enemy retaliates by releasing uric acid and toxins, making the body feel weary, sore, and defeated. The “bugs” themselves are known to mutate and alter throughout a life span as well, evading the most thought-out attack plan. The battles within the body are made worse by the battles against the system. A sick Canadian often must make Allies with American physicians and labs and pharmacies. Most join underground groups to gain information. Sometimes we surface in protest or a resistance movement, but then quickly go back into hiding before someone in power is alerted. We have our own language, a code of sorts that we use on social media that only fellow Lymies understand. Together we must quietly, carefully determine which hill to take and when to dig deeper into the trenches.
I am not a physician or medical researcher, and some reading this blog will have much to say in their defence and against my views. But I must remind those skeptics that I have first-hand experience, which trumps what rats reveal in a lab. I am living with this disease, I am on the frontlines seeing the damage firsthand, and what’s more, I have the courage to recognize a problem and help people find solutions. Usually the people who tell me Lyme doesn’t exist have not done much research or ate the lies taught by the ivory tower inhabitants.
I can turn the light on so that others help put the puzzle pieces together and form one clear picture. I can ask questions that spark discovery, such as, “Why do fibromyalgia and Lyme have the same symptoms? Why do both MS and Lyme patients have brain lesions, nerve damage, and mobility issues? Why are spirochetes discovered in the brains of many Alzheimer’s patients and IV antibiotics return memories to some, yet Alzheimer’s is not treated as an infection? Is it not odd that Lou Gehrig had a summer home in Lyme, Connecticut where he walked and gardened, and a couple decades later many people in that town became sick with Lyme disease?”
All these questions flow through my mind daily and by asking them aloud maybe the ponderings will spread until a mass of voices are asking for a new way of treating and healing.
I can be an advocate. I can be a voice for those too weak and debilitated by these infections. The entire cover-up of this endemic is a moral issue on all levels. Our blood supply is infecting unsuspecting victims, undiagnosed women are unknowingly giving birth to congenitally infected babies, and those struggling to survive are going to different countries for treatment. Our very humanity has lost its value because of the corruption surrounding Lyme disease.