Ethan – “No winter lasts forever; no spring skips its turn.”
Growing up, I had sporadic skin issues that caused me a lot of pain. My skin would get deep lesions that cracked and bled. Sometimes it was so painful to walk, I would limp around trying to walk on my heels to avoid the lesions. My mom took me to several doctors, but no one seemed to know what was causing it. None of their prescribed treatments did anything to help.
As a kid, I performed inconsistently in school. Some days I could do the work with ease and other days I couldn’t. These cognitive issues affected my day-to-day and were very frustrating. Sometime my personality felt “blank” and I was not myself. This would last for days or weeks and really concerned my parents. My mom knew something was wrong, so she kept searching for answers. She took me to try many different therapies to help with these brain-related issues, but things only got minimally better. It seemed like we were always chasing bizarre yet familiar cycles that never made sense.
My mom was the first in our family to be diagnosed with Lyme disease. She was horribly sick and bed-bound for a while. It took a lot of searching before she got the right diagnosis. This was a very hard time for our family. My dad and my three siblings were also struggling with various symptoms and all six members of our family were eventually diagnosed with Lyme disease. My siblings’ symptoms were more severe than mine, so for a long time the focus was on them. However, our LLMD kept one eye on me and kept urging my parents to treat me.
I understood that the expense of Lyme treatment made it impossible for all of us to be in care at the same time. We had a phrase, “who’s worst goes first,” and so I went last. It’s not that my symptoms were easy; I was just more functional than the others.
I formally started care with our family’s LLMD in high school. It was scary because I got even sicker once treatment started. I began having debilitating stomach pains. Even though I was already a thin person and my appetite had tripled, I lost a lot of weight very rapidly and became underweight. I did not have strength or stamina and had to take a year off basketball. I constantly had an overall sensation of feeling sick and this was hard for me. My white blood cell count dipped dangerously low to the point my family had to quarantine in order to protect me from exposure to new infections.
All my previous brain issues from when I was younger returned. Feeling “blank” again was especially scary for me. We learned that what I felt is called depersonalization and can be very common with Lyme. My rapid decline made my parents question whether they were doing the right thing by treating me, but I’m so grateful they listened to our LLMD and just kept going. Treatment was a lot of hard work for all of us, and I’m truly grateful I was given the chance to heal.
During spring of my senior year, my symptoms began to normalize. I started putting weight back on, the stomach pains stopped, my cognitive symptoms normalized, my personality returned, schoolwork became easier, and I was feeling healthier and more energized than ever. It still amazes me how complex the process was and how rapidly I made improvement at the end after such a long, dark time.
Receiving the LymeLight grant was a true blessing I can’t adequately express. I don’t think our family could have kept going or that all of us would have gotten care if it weren’t for the financial support given to us by LymeLight. I can’t imagine if I had to stay sick! Because of LymeLight, I am now the healthiest version of myself I can ever remember. I have stamina, no stomach pains, no blankness, no lesions…it’s awesome! I work a physically demanding job with no problem at all. I am able to go to college and was recently put in Lyme remission status—the first in my family. I’m so grateful for all the healing I’ve experienced. Thank you LymeLight!! You literally changed my life.
Lastly, Lyme disease can be a very difficult journey that most people cannot really understand. Please try to endure through all the ups and downs and know that full recovery is possible. It’s probably the hardest thing you’ll ever have to do, but you’ll be so glad you did!
“No winter lasts forever; no spring skips its turn.” – Hal Borland