I haven’t written a blog post in over a month. I haven’t picked up my guitar since January. I haven’t done a whole heckuva lot that doesn’t involve keeping my head above water in the past three years, but this last month was worse, way worse. It’s completely deflating to experience progress when it comes to your health and then have one setback after another… bad reactions to meds, denied insurance coverage, pulled out PICC lines, abnormal blood tests, and a broken port make me feel like I’ve taken 50 steps back after I had finally gone forward a few steps.
There is a fear that creeps through my mind lately every time I open one of the four dresser drawers that I converted to my IV supply storage. The fear is that this disease is becoming my normal. I’m getting used to this hardly living, battling to have a better quality life, revolving my days around IV poles and dosing schedules – way of life. It’s just another day to me now. I go to the store and don’t even notice that my line has fallen out of its hiding place in my bra and there’s blood on my shirt from my needle change earlier that day. Days when my Chloe climbs in my lap and announces that I always smell like a hospital. I can ignore the buzzing in my ears, my palpitating murmuring heart, and the radiating nerve pulses that come and go. My family graciously overlooks my memory lapses and pauses in conversation because I forget what I’m talking about and my brain just gives up. I’ve learned to stop making plans, because I can’t trust my body from one day to the next. I have a ridiculously high pain tolerance that keeps getting higher. I can ignore pain that would knock most people down for days. Each new bruise and scar is a constant reminder that I fight this disease every day and that giving up is not an option.
I have learned how to adapt to a life of chronic pain and fatigue. I hardly flinched when anesthesia tried four times to find a vein for my port replacement surgery. I’m used to needles, blood, and everything that comes with it. No one should ever get used to that. The anesthesia doctors always say the same thing after ignoring me when I warn them that I’m a hard stick, and my veins probably won’t cooperate. But they are still so surprised when my veins blow and blood flies in every direction.“Wow, you really do have bad veins.” My inner smart ass always wants to say, “No? Really? Thanks for informing me. It’s why I have a freaking port, it’s why a PICC line didn’t work for me, it’s why I’m in the hospital for the fifth time in less than six months.” Seriously, though.
There is a haunting idea floating around the chronic illness crowd that we must separate ourselves from the disease or disability before it becomes who we are. Some people get really angry in the online Lyme community about this notion, and I know the frustration. Some call themselves “Lymies,” while others are appalled that we would want to identify with our disease in such a “cutesy” way. Some sufferers have come to terms with the fact that this is their reality right now and remission or not, Lyme will always be a part of their story. Some bring awareness to the disease by taking a picture and posting it with the caption, “I am Lyme Disease” or “This is the Face of Lyme Disease.” Personally, I went into this with the flippant and naive notion that I could control it. I believed that I would not be defined by Lyme. I even wrote that “I have Lyme, but it doesn’t have me.” I think that in some ways, I was very wrong.
Because, eventually it does have you, so to speak. Inadvertently, Lyme does become you – maybe not permanently, but when you go through something day after day and year after year, with no real end in sight, it has a tendency to get on you. It leaves its mark. It leaves its mark on your relationships, your spouse, your faith, your friends, your passions, your kids, even your pets. It can’t help but become a part of you. And maybe we have been looking at this all wrong.
Maybe we have to become it, to overcome it.
It’s kind of like when the good guys learn everything they can about their enemy so there will be no surprises later. They do these long-term covert operations to hang out with them, spy on them, and live with them so that they will know the absolute best way to defeat them. I’m suddenly realizing that this is where I am these days. I’m hiding out with the enemy, sleeping in his bed, wearing his clothes, learning his language, and reading his books so that I will have everything I need to put him to rest someday. I hope the next couple months of treatment will be my final covert mission. I would love to put Lyme to rest, once and for all so this struggle can just be a few chapters in my story, not the whole book. As Maya Angelou puts it so eloquently,
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”