The Lyme Life Merry-Go-Round
by Jennifer Allton
Take this moment to ride with me on a Merry-Go-Round. Drop all the preconceived notions on what you have ever experienced and travel with me today. You are standing on the platform holding onto handles while someone else is spinning the ride round and round. This Merry-Go-Round represents our Lyme journey. For the last few years (decades for some), we have been holding on dearly to this little ride and it has been spinning faster and faster. There is an assortment of emotions that accompany us. Some of these emotions come on suddenly without warning and others stay with us for a while.
Take this voyage on the Lyme Life Merry-Go-Round to learn my very raw feelings. Please note that not all of these emotions are pleasant, but they are the honest truth. Upon stepping onto the ride the first time, please observe the fear and nervousness of a potential relapse. You will also find apprehension that doctors will never understand the severity of Lyme Disease. Others will go undiagnosed for way too long which creates panic of losing Lyme friends over such a devastating illness. I fear what the medications are doing to my body and yet I am horrified about what my body would do without the medications. I experience daily anger over medical boards within the United States of America targeting doctors simply because they believe in long term treatment of Chronic Lyme Disease.
Yet, I find myself feeling surprised every morning when I receive messages asking if I would speak with someone about Lyme. It appears that every day there are more people that are joining the Lyme ride. It amazes me now that I advocate for such a disease and I had barely even heard of it three years ago. I feel distressed about meeting new people and their acceptance of Lyme Disease. I remember where I was before my diagnosis. I felt as if these other people with this disease were insane thinking that everyone had it. Now what I have come to realize is this: is it really paranoia if the ticks are out to get you?
Still on this ride, I find myself feeling anxious because one day is great and the next day is appalling. It is tough to distinguish which kind of day will transpire in order to assemble any type of plans. Old friends understand, but new connections do not since they have never witnessed a bad day. This leaves the incredible feeling of guilt. The guilt stems from not being able to stop the ride for enjoyable moments with friends and family in either spontaneous or planned ways. Eventually, this leads to loneliness. There is sadness that life may never quite be the same because of a single tick bite and depression develops terribly because I miss my friends and family.
There are other truthful outlooks of riding this Lyme Life Merry-Go-Round. These aren't my most defining moments nor do they glorify God. But they were there. This wouldn't be a very candid article if I left these emotions out. There is jealousy. This resentment is for people in my life that have never experienced what I have. There is hatred for all those that don't believe that it really exists. Even through all of these emotions, I wouldn't wish it on my worst enemy much less my best friend. Just because they haven't experienced this doesn't mean they don't understand.
Now you may think there are only bad emotions on the Lyme Life Merry-Go-Round, but there are some motivating feelings too. A sensation of amazement develops when I last the whole day without a single symptom and am simply stunned at how strong I have become in the last three years. There is a sense of pride for riding on this Lyme journey so long without compromising my work life. The pride represents the 100 percent I have given to the children in my care since the beginning of my journey. I get a sense of satisfaction that I know my body well enough to recognize when I need to ask for help. There is happiness for all that I have been able to do even through the worst of times and love for all of those that have stuck with me through this journey.
Lyme gives me the experience of laughter when I do something so insanely stupid that the only way for me to get through it is to chuckle. Who knew that this disease could provide fodder later on? There is the time I asked if they sold video games at a toy store, the time I walked into a glass door or even the time I got into the shower with all of my clothes on. I giggled then and I chuckle now. Then there are the moments that made me cry. Those are the times that I couldn't figure out how to open the gas tank in my car, got lost going home or the instant I fell asleep at a stop light. Despite the fact that those occasions were sad moments in my life, they offer a great deal of comedy now.
This journey is over for now, but I challenge all of you to smile today. I know this is a difficult task, but one that we must keep on doing. One of my favorite poems is by an unknown author and it is about the contagious gift of smiling. The poem in and of itself makes me grin. Come visit me to join in the laughter, the sadness and all of the emotions of the Lyme life. Share your stories with me and maybe we can get the world infected with laughter through our tears.
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