I pulled the infected tick off of my best friend Lindsey while camping Memorial Day weekend 2014. Little did I know the journey to hell and back we were about to experience. Not knowing and fully understanding a disease or illness is like entering a room filled with strangers, but you are supposed to know their names, faces and backgrounds. It’s overwhelming. It’s frightening.
We were used to leading full lives filled with family, friends, work and travel.
Busy, busy, busy.
This girl, she could do it all and twice on Sunday. Her love for life and family was contagious. She was always the life of the party and a brilliant business woman. She’s my magical friend.
As I watched her diagnosis unfold, I saw a beautiful friend morph into something I’d never before seen or experienced. Rapidly her body turned against her. Every day a new symptom would take the place of a normal function. She was, within a month, immersed in a fight for her life. These bacteria were wreaking havoc on her body. Seizures, muscle spasm, facial drooping (like someone who’s had a stroke), high fever, meningitis–like symptoms, flu–like symptoms, migraines, vomiting, memory loss, and on and on. It happened so fast and just got worse. There were times I couldn’t believe she was able to stand or eat. What the hell has this stupid tick done to my friend?
When she couldn’t remember day to day tasks or symptoms from just hours before, I knew I had to become aware of what we were dealing with. I had to become what I like to call an amateur expert on Lyme disease. I had to understand what this was doing to her body. I was fortunate to accompany Lindsey on Dr. visits. I took notes for her so when her memory failed her, she would know what the Dr. said. I learned so much from this Dr. He was the only person who knew and understood exactly what her body had to fight off inside her. She was definitely in a serious battle for her life.
I started following Lyme update sites and survivors. I couldn’t believe so many people were left to deal with this on their own with no help from the community or medical field. I came across a post from a Lyme disease survivor, Patrick Plum, who now spends his every spare second spreading awareness, prevention and most of all kindness and support. He said “Chronic illness will show you two things very clearly: The amazing compassion of some people you hardly know at all and the disgusting selfishness of some people you thought you knew very well.” This rocked me to my core. Lindsey was facing the same things in all facets of her life. I was stunned. How can this be? I’ve seen it with my own eyes. These people were all alone except for the few who stopped to listen and acknowledge their plight.
I’ve heard so many times Lyme disease being referred to as an invisible disease. Invisible???? I have to disagree. When you see your friend deteriorate mentally and every physical part of her being change, it’s only invisible to those who turn their head or are left outside the safe circle of self-preservation. She was only invisible to the public because you are no longer able to be public. It takes too much energy and there is no time when your days are filled with hours of treatment morning and night. If you’ve seen what I have, there is no denying this disease eats you alive from the inside out. Lindsey became very good at hiding her pain. This was easier for her to do instead of dealing with judgment and disbelief followed by the same questions over and over: “So, you are better now right?”, “You look good today, I thought you were sick?”, “Can you even get that disease in Arkansas?”, “Is your immune system just really weak or something? “, “Shouldn’t you be better by now?”, “Aren’t you thankful you don’t have cancer?”
I couldn’t make the pain go away, so I started anticipating her needs, repeating conversations as though it were the first time we discussed something, making her laugh, staying positive in any way possible, listening to her, encouraging her, thinking of distractions, healing distractions.
The best distraction for her was to take an air mattress outside and soak up the sun while either getting some much needed rest, listening to music or playing guitar. Vitamin D from the sun saved Lindsey on some of her darkest days (some terrifying times but I won’t get into the details). So thankful for the sun!!!! We started calling our time together Mop Girl moments (long story but the name has great meaning to us). We would take off our shoes and walk through the neighbors grass. If her legs weren’t moving that day, well, we sat on the couch and played Yahtzee. Many a night we spent sitting in her carport, listening to music and dreaming of what we wanted to accomplish with our business. Anything to keep the positive force running through her we did.
My job as a friend became clear. Support, support, support. We were now hearing from small groups of strangers, clients, friends and kind local businesses that wanted to help her. She thrived on the positive. She pushed forward through the motivation of others. I had to help keep the momentum going in the quiet times. I was now reminding her of her old self and what she was capable of doing in hard times. I wanted her to know she was still the full-of-life friend I loved so much. Her husband Aaron, is the coolest most caring dude I know (she won the lotto with that guy). He literally cared for her every single day. Flushing the central line in her chest, administering antibiotics, bathing her, cleaning up vomit on the reg. True unbiased love he showed.
This guy is one hell of a human. He likes a good Mop Girl moment too!
And if I talk about her parents, I’ll get all teary and lose my place while writing. Let’s just say these folks have a special kind of love and compassion. The strength and character they show in the toughest of times is profound. I see where she gets her tenacity and drive.
When finally the fog started to lift and her treatments were now starting to make a significant difference, she was on the move. She asked questions and followed everything her doctor said. Because of her strength and perseverance, Lindsey mustered up more positivity and hope for her wellness. She started this blog to spread awareness but really she is sharing the light she has found in the dark. She is the smartest, bravest and strongest person I’ve ever met. This chick is a bad ass.
She was on to something you know. When you think about it, negative thoughts will feed any disease. Negativity and loneliness are the enemy. She needed positivity. She needed support. She needed what she had given me numerous times before, action without expectation.
I’ve told more people than I can count about Lyme disease, ticks, prevention with DEET, what action to take if you have a tick bite. I got kind of crazy about it. Spreading awareness was the one thing I could do to make a difference.
I did this for her not because I’m selfless; I did it because of my selfish need to have my friend back and well. I didn’t want this to kill her. I couldn’t afford to lose her. We have plans for the future. We have more to experience. I’m so thankful for her health. She has never let Lyme disease define her. I’m amazed by her willingness to find the truth, her power alone and singular, her drive to live. She has no idea how much her journey has impacted me, but I’m inspired to live my best life because of her. Be there for the people you love even if it’s hard and not ideal. Some of the best moments in life can come from experiencing some of the darkest.