My Sub-Lyme Life, (Paperback)

No Regrets

That heading is not entirely true. I do have some regrets, such as not learning Latin American dances or traveling more. I have a curious nature and once enjoyed visiting new countries and meeting people of different cultures. Also, I regret not having had a normal relationship with my mother. Other than that, I don't spend time in sad contemplation, maybe because I have been accused of being highly practical, which leaves room for only occasional bouts of sentiment. When one is focused on survival, as I have been for many years, saving energy with every physical movement is the goal for the day - there is little energy left for much else.

Why? Quite simply - rickettsia infections. Rickettsia, burgdorferi on one side of the ocean; Lyme disease on another side. By whatever name, these miniscule, infinitely small spirochetes, or bacteria in more common parlance, carried by ticks, fleas, and other creatures, are exponentially destructive. They rob health and create enormous fear and confusion, especially when they escape the radar of a precise diagnosis. As a result, I stopped dreaming at age 17 as I had no idea if I would make it to my 21st birthday.

Now, decades later, apparently, I needn't have been concerned. Hindsight is 20/20, as everyone knows, and I have managed to remain employed and, until recently, to take care of myself. Sometimes, I think that I am similar to disabled animals who have little carts to support their useless legs so that they can carry on with their lives, not really knowing or thinking of themselves as being disabled. There is too much to be done, too much living to do or, more accurately in my case, sheer survival that drives my daily activities.

I cannot help but wonder how such tiny bacteria can do so much harm. I remain stunned that they are so incredibly ancient, sinister, and powerful. One small tick bite with a certain volume of bacteria injected into my body managed to all but annihilate a certain section of my nervous system that controls physical movement. Those few bacteria needed only a short time to produce nasty symptoms like full-body rashes, pins and needles, headaches, hair loss, anemia, poor sleep and brain fog, liver toxicity and, most inconveniently, a loss of the use of the vast majority of muscles in my body. Simple, effective, destructive, and deadly.

My hands still work well enough to type. So, every day, I sit at my desk, shoulders bowed. My head is heavy, weighing me down as I attempt to remain upright enough to continue typing away at the freelance projects that pay the bills. Difficult but still doable. I can move my legs outwards and inwards when sitting. Even if working for myself has not been easy, I count myself as lucky to be in this position, which brings me to another regret - that I didn't leave the corporate environment sooner to find online work.

Perhaps part of my will to battle on has been prompted by flashes that my mind and soul were somehow separate from my body. I felt that way long before any parasitic bacterial infections decided to squat within the realms of my flesh. This disconnect has been with me for as long as I can remember: my soul, mind, spirit have never felt integrated.

Despite my occasional fantasies about overcoming Lyme, I have become resigned to the idea that I will never recover my physical strength or experience the joy of corporeal movement again. I do ask myself: where did it all go wrong?