Lyme: On Being A Lymie

oh the Lyme …. how sour an existence it has been!

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Before beginning to write about my story and listing the symptoms of my unusual lyme condition manifestation, I would like to say that (at the time of this post) I am in the process of reading The Winter of Our Discontent by John Steinbeck, and it is so far proving to be one of my  most favorite reads of all time. Perhaps the timing was right.

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Handsome Young John Steinbeck

So before delving into my story I wanted to include a few quotes that, on their own, capture my experience with Lyme. More than anything, this journey with the monstrous Borellia bugs, admirable and fascinating as they are, have created an introspective experience for me alongside the pain and weird body responses.

Here are my favorites:

“I wonder how many people I’ve looked at all my life and never seen.”

This more than anything made me aware of other people’s struggles. Because I had experienced the devastating politics of Lyme first hand, I began to wonder how many people I’ve come across who were, ARE, suffering but couldn’t access information or treatment. How many who people whose pain I’ve dismissed? My sister was once diagnosed with fibromyalgia, and I so wickedly accused her of chronic “in your head” syndrome. As a child, I was a bully. I beat up on people who picked on others with words. I wasn’t good at expressing myself well, and still am not, so it aggravated me more to see others being picked on for stuttering or for looking a certain way. My career as a bully backfired, and for all the right reasons. There is never a time that physical harm is justifiable. And though I realized how both types of bullying were bad, I didn’t realize how verbal or psychological bullying felt until experiencing it myself. It is as severe, if not worse, than any punch in the face I’ve ever received as 7-year-old bullying veteran. And so, I am sorry to my sister and everyone who I have ever doubted about their pain or for being brave enough to reach out.

“It’s so much darker when a light goes out than it would have been if it had never shone.”

This captures things whose absence leaves a darkness less dark than had they  not shone at all. For me it is the diminishing health of mind and body, and the preponderance of education– after all, ignorance is bliss.

A mind that loses its light is a sad devastating thing. Ask the families of those whose loved ones were stricken with dementia or Alzheimer’s. Likewise, the body that once was healthy and loses its strength is a painful thing to adjust to. My father and grandfather both lost their vision to diabetes and glaucoma. Though they can no longer see, you can still see the light dimming in them again and again each time they recall a memory of seeing.

For Lymies, it is the uncertainty of a normal life. It is the slowness of deterioration that creeps in robbing you of your normal former self. For me, this happened over three years. And I wish, every Lyme-cursed day that I never knew what it was to be fit and healthy. Transitioning from a once graceful and coordinated person to someone who can’t gauge how far the table is from the cup in her hand is a miserable feeling. Likewise, the loss of words to a word-geek or the ability to run from a runner… the list goes on.

At the risk of being melodramatic: the light literally goes out when you have Lyme. You are invaded by something other than you, and are in the ranks of the living dead.

Finally here’s one I am sure most Lymies will relate to:

“No man really knows about other human beings. The best he can do is to suppose that they are like himself.”

And this is where doctors fail to understand that the patient is NOT like him/herself. There is something wrong, and something eating at you ever so slowly, that even YOU yourself do not understand what is going on. But one day, you wake up and look back and see someone completely different and realize the rate of deterioration you had experienced was in fact a speedy one. Like a fox, it goes unseen, but it is fast even though you do not see it.

You will doubt yourself, you will want to believe others, you will be diagnosed with multiple conditions, and you will be called crazy. But you must know this, that NO ONE knows what you are going through but you. So look at those around you, and if they are not like you then accept them for who they are and leave looking for those who are like you and who will accept you for you. Your journey does not have to be fought alone.

Like I said in other posts, I am blessed with the most wonderful person I have ever come to know. He isn’t a Lymie. But he is very much my other half, and I am thankful to whatever divine force there is that he isn’t sick. He has been a rock when those who I have known my entire life stood against me and brought me down when I thought there was no more “down” left to fall.

I urge everyone that comes across this entry to read Steinbeck’s masterpiece. It was written at a time when Steinbeck believed America was facing a degeneration of morals. Perhaps not the case, or perhaps it was. Either way, everyone will come out with something from it….

Finally I leave you with this wonderful quote that captures the impossibility of objective medicine so long as humans are patients and doctors, and patients have ailments, and ailments become stories to be told to the curing doctors that are paid to diagnose:

“A man who tells secrets or stories must think of who is hearing or reading, for a story has as many versions as it has readers. Everyone takes what he wants or can from it and thus changes it to his measure. Some pick out parts and reject the rest, some strain the story through their mesh of prejudice, some paint it with their own delight. A story must have some points of contact with the reader to make him feel at home in it. Only then can he accept wonders.”

and

“In poverty she is envious. In riches she may be a snob. Money does not change the sickness, only the symptoms”

Love,

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