When I tell people I have Lyme disease the first question they usually ask is, "do you remember getting bit?" Of course I don't. I got that sweet blood so I got bit by bugs all the time. In the summer I was covered in bright red mosquito bites, so bad that my pediatrician would have the antibiotics on deck, ready to go. I didn't truly know what ticks were and what they could do until I was told I had Lyme + a ton of other co-infections. When I told people about the diagnosis almost everyone who knew about Lyme congratulated me. They told me I would be completely better in 6 weeks because all the people they knew who got it recovered completely ( I highly doubt that was accurate).
After what the CDC considers "treatment" I was in bad shape. My primary doctor sent me back to all the specialists I had seen a million times, where they had no answers every time. My balance was completely off. At times I'd have to practically scale the walls to keep me up straight. I would call out of work a lot because getting out of bed felt like the most difficult task of my life. I felt like I was carrying a piano on my back. I would get on the computer with the blanket still wrapped around me. Wouldn't even wash up or brush my teeth. I'd eat whatever was there or the quickest thing I could make. Don't even ask me what the hell my husband at the time was doing. It was a really tough, confusing, and lonely time. It hurts to even think about it.
What people outside of the community don't understand is that it's more than just getting bit by a tick many times. For me I had symptoms as a kid. And from the outside I seemed to be functioning normally. As I got older and experienced different traumatic events I started to get worse. Dealing with the loss of people, housing, and other things without ever really talking about it and repressing those emotions really affects your health. As much as we'd like to just ignore it, those feelings live in the body and will show up in other ways.
In high school and eventually college my diet was absolute trash. I wasn't eating healthy and my sleep became non existent. I eventually developed TMJ and I would grind my teeth so bad I would wake up my boyfriend. Sometimes I'd wake up and he was asleep still holding my jaw. With terrible diet my gut was a complete disaster and with sleeping less, while going to school and working my mental health declined, my mood worsened, I was super irritable, and my neurological symptoms became almost unbearable. Doctor after doctor, test after test with no answers will really do a job on you too. You start to question your sanity and wonder if life is worth living. Knowing what I know now a lot of things make sense. Fortunately I have had the privilege of being around and healing enough to learn that. I believe many have died due to this illness and I know many have taken their lives. I can only imagine how many are in prisons or being heavily medicated in mental institutions. I know the number of Black and Latino people in these situations has to be sky high.
If there is one thing I wish I would have been able to do differently it would have been to be able to voice what I was feeling while I was feeling it. It was hard for me to describe what I was experiencing and nobody knew what I had going on. But at the same time I barely knew what I was experiencing. It's such a confusing illness because it's like having a dozen illnesses in one. And I mean at the time there wasn't as much quick access to information the way there is now.
I now try to make space to heal that inner child that was suffering and confused. I still feel her in there and at times I just sit there and let her be. I give her the patience I didn't have at that time. I let her air out her frustration while now having the tools to release the emotions as best as she can. I let her know we are safe now and people are here and aware. I try to remind her she is loved and that many people feel supported by the love she gives.
This photo I was about 3 years old. I got a mosquito bite on my left cheek that got infected. I look at it and wonder if that was the bite that set it off for me. I have a slight Bell's palsy on that side as well. I also had a concussion from an injury on the left part of the front of my skull. But we'll go crazy trying to put all the pieces together.
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