Strength

Strength

     My husband once told me how he describes me to people who have never met me. He said that he compares me to a combination of Mary Lou Retton (of 1984 Olympic fame) and Linda Hamilton in “The Terminator”. He tells coworkers that I have the lower body of a powerhouse gymnast and the upper body of a machine gun wielding action movie star. Despite the fact that these descriptions date us a bit, I am sure they are meant as a compliment. In my mind, his words conjure up the image of a sort of “herculean” caricature with my face on top. Regardless of the ridiculousness of the image, the concept it clearly brings to mind is strength.

            I can only dream that I was in ever in the same physical shape as either of these remarkable women. (And I do believe he came up with this analogy BEFORE I had three children). Honestly, I think my husband is adding a bit of fantasy to the reality that is his wife. The only similarity I can find between myself and my husband’s imaginary pile of muscle is that I have actually always considered myself to be a very strong person.  You’ve heard of the “strong silent type”. I think that is me in a nut shell. We all know somebody who embodies that description, but the strength in question is not always of the same origin. Personally, I have always thought that I was strong bodied, strong willed and strong spirited but Lyme disease can take even a Retton/Hamilton combination and turn her into a weak, weeping pile of gelatin.

            Most who suffer from Lyme Disease feel constantly weak, physically, mentally, and emotionally and I am no exception.  Add to that the paradox that it is both impossible and completely necessary to work out. According to the current theory, working out helps eradicate the Lyme bacteria because they do not like heat, but aerobic activity is absolutely forbidden until the disease is somehow under control. Weight training is recommended but somewhat limited (for me at least) because of some serious joint issues not to mention unceasing fatigue. So, every time I tried to work out, I would crash. Sometimes I felt as though I couldn’t lift a squirt gun much less the arsenal Linda Hamilton packed in “The Terminator”.  Every time I tried again…and failed again….and a little more strength faded away. 

            Lyme has a way of breaking down other strengths as well.  “Post- exertional Malaise” leads to physical weakness, brain fog leads to mental weakness, the inability to perform at previous levels in all aspects of life leads to psychological weakness, and the constant failures lead to a crumbling spirit. All of this piled on top of one person makes that person feel incredibly fragile.

            I still remember the first time I was referred to as “fragile”. It was at my first meeting with my LLMD (Lyme Literate Medical doctor) and my husband was having a difficult time grasping what this illness and its treatment would do to ourselves and our family. My doctor said “Think of your wife as being incredibly fragile right now”. My husband’s image of me is powerful and strong, not weak and cowering. So, as a result of that profound statement, I felt a combination of relief and embarrassment. Yes, with all that Lyme-induced weakness I guess fragile is a good description and in that instant I knew that my doctor completely understood the enormity of what I was dealing with. For that I felt relief and great gratitude. But fragile connotes something that is very easily broken—and though in some ways I was broken—it had NOT happened easily.

            Therein, I suppose, lies my greatest strength and the strength of all those dealing with Lyme Disease……the strength to persevere….to move forward despite great obstacles, and the strength to get up every day and stand, though wavering. At the worst of this (which I genuinely hope is far behind me), it was so hard to get out of bed that it was akin to having a 400 pound man sitting on me. Every day I would have to find the energy to throw him off of me, and that was just so I could complete my very first task of the day: getting up. The weight of that man was comprised of debilitating illness, nausea, pain, sleeplessness, confusion, fatigue, despair, loneliness and hopelessness. Once my feet, although shakily, hit the ground I would then spend the remainder of each day attempting to dodge a giant wrecking ball. Sometimes I would be successful at evading it, but sometimes it caught me weak and off-guard. Rarely did it knock me down completely, though it seemed hell-bent on doing exactly that.

            If the 400 pound man was comprised of all the internal aspects of Lyme that weighed me down, the wrecking ball embodied life’s external hurdles made 100 times larger and more formidable by illness. It encompassed normally mundane daily tasks, small challenges, lack of energy, lack of understanding, the absence of support, judgmental glares, thoughtless statements, and general ignorance about the destructiveness of this disease. Unfortunately the wrecking ball became exponentially larger by all the doctors who, for years allowed me to suffer because they believed that my symptoms were “livable”, “unremarkable”, and “ordinary”. It was hard enough to throw the 400 pound man off of me every morning, to get out of bed and to work through confusion to get myself to a medical appointment. After years of disappointment it became even more difficult to keep hope alive that this time the wrecking ball would miss. Maybe this time I would not be knocked flat by the very people who I had sought out to help me. So often, though, I did throw the man off, to make it to a doctor who then mowed me down again with the destruction of a callous statement.

            The Lyme experience will teach you that strength is getting up after you have been pummeled YET AGAIN, and continuing to fight because you know (but cannot “prove”) that something is seriously wrong. It is finding a way to reach out with hope and faith when you have been told for the thousandth time that “it” is all in your head. It is pulling yourself up enough times to find a solution, and fighting your way through the hell that is Lyme treatment. It is believing that the weight will be removed, the attacks will cease and the proverbial light at the end of the tunnel will be revealed. Come to think of it, my husband may be right. Maybe I am Retton/Hamilton after all.