Archive for Karen Angotti Writings

A JOURNEY THRU LYME ©Karen Angotti

// June 30th, 2010 // No Comments » // Karen Angotti Writings, LymeBites Blog, Mother's Corner

(the following is copyrighted and used with permission)

When Lisa Marie was about two, she asked her daddy where the bus traveling south down Highway 101 was going. Now, she thought she already knew the answer to that question because the only place that she saw buses very often was at our church. So, when her daddy casually replied, “Oh, maybe L.A,” she chortled at the joke she was sure that he was making. You see, she had also heard of L.A. and lots of other big cities. Daddy flew to them all the time in his job as an airline pilot. So, quickly joining in the fun, she shrewdly joked back, “Oh, ho, maybe Tokyo!” Much to her delight, her daddy thought that her joke was hugely funny. Within a couple of years, her knowledge had expanded to include the idea of the Pacific Ocean and the location of Tokyo far across that ocean. This story reminds me much of myself and my ignorance at the beginning of a journey with Lyme disease. But I have come a long, long way. I have come a long, long way since I first asked a lady about a drug called “Rockafin.” She asked me to repeat it a few times then burst into gales of laughter as she gasped out the correct pronunciation, “Row-se-fin” (Rocephin). I had just about mastered Ixodes dammini, too, when the powers that be announced that it was no longer a species and, instead a tongue twister called Ixodes scapularis took its place. Fortunately, the Ixodes part remained the same and soon I was belting it out with the best of the entomologists because part of the mystery had been solved, the mystery of how we came to be ill with Lyme disease when we did not have “the” tick, the tick that causes Lyme disease that is. Borrelia burgdorferi was another quite onerous task to learn. I really thought that these scientific types surely did enjoy naming things with long names until I learned that it was named for Dr. Willy Burgdorfer who discovered the spirochete (college biology had put me on speaking terms with spirochetes). I was so grateful to him for his discovery that I happily learned the name but it would have been a lot easier if he had happened to be a Smith or a Jones. Still, somehow, I do not think that Borrelia jonesi or smithi would have quite the same scientific ring. And even something that simple looks awfully funny italicized and with an i on the end. Erythema chronica migrans was improved considerably when most people started deleting the chronica. Though just looking at it still made me think of migraines. Personally I prefer the abbreviated EM rash or the even more descriptive and comprehensible bull’s eye rash. In a short amount of time I began to comprehend that ELISA was not a character in Uncle Tom’s Cabin and I can even spit out Enzyme Linked Immunosorbent Assay. Nor is the Western blot some test done exclusively in the Western section of the country. Then after a couple of years of these totally maligned antibody tests I heard about the superduper PCR/DNA (polymerase chain reaction/deoxyribonucleic acid). You will note the better the test is supposed to be, the longer the name. This being B.O.J. (Before O.J.) not many people had heard of PCR’s or DNA testing. But through perseverance I discovered that the two are used almost synonymously and should soon replace the impossible-to-reliably-perform culture. There is one word in this maze though of which I heartily approve, a little four letter which shares the reputation of many four letter words, a word that one must purse one’s lips exactly so to say, the word bleb. I must congratulate whoever was instrumental in naming this appalling attachment to the spirochete whose function no one can quite explain, for the name personifies all that I feel about Lyme disease. How can you say bleb without feeling like you are spitting or screwing one’s face into the shape of a wrinkled prune as though smelling a repugnant odor? Most appropriate sentiments for such a disease component. There are other things that I have learned, things that have been imprinted more indelibly on my brain than these multi-syllable, diction improvers. Though I have mastered many mechanical skills such as giving shots, changing central line dressings, clearing blocked catheters, inserting feeding tubes, running different kinds of pumps, and even the dreaded drawing blood (I had to tell myself that if millions of IV drug users could find a vein even in their drug induced stupor, surely I in my right mind could locate a simple blue flexible tube under the skin.), these too are not the things that come upper most to my mind when considering this disease. The thing that amazes me the most is how much I have changed. Could the meek girl who quaked in the face of any disapproval from authority really be me? Could the person who would have tears flowing in the face of the most minor insult now be one who can return stare for stare and respond with, “Oh well, I guess everyone is entitled to his opinion.”? Am I still that person who always finagled some way to have my husband do any returns that had to be made and did not really like to attend any function without him? Maybe, because I still think that any confrontation or disagreement takes more out of me than it does the other person, but I am stronger, more determined, more self-assured. I hope that is good, because my husband also tells me that I am more cynical and skeptical and harsher and somehow I know that he does not particularly like it. Women should never go to war for it is impossible to watch people suffer and die at the hands of greedy power mongers and not change, not lose some of their softness, and still be able to fight. And why is it that I feel more vulnerable, more exposed, more tender than ever before? Is the other just the shell, the tough outside covering the scared me inside? Oh, yes I am scared. Only fools are not afraid in war. I have seen the destruction that this war has wrought for the battleground has been inside my child’s body. And I have watched a once vibrantly healthy, finely toned body shrivel to a painfully thin, exhausted, pain- ridden shell. And I have watched eyes that once shone with the zest of life dull to the faintest ember in the presence of the pain. The casualties in this war are not the scientists with the defeated paper, but the patients with the raging disease. And so I will learn the tongue twisters, and read the medical journals because God has placed me in this fight and these are my arsenal. And because He is just and good, I know that there is a purpose in this gruesome war and eventually Right will prevail. And in the words of one old soldier, “I have only just begun to fight.”