I don’t know how to explain the chronic diseased life. There are only so many words and I think I have used them all. When it comes to living a half-lived life, words fail. This type of disease is tricky. It is confusing since there is quite a bit of false information out there and then sufferers can be misunderstood. Even after all my research on the right treatment approach, the lines are blurred. There are no absolutes. It is the ultimate frustration for my husband, who has the mind of an engineer. He wants black and white, but Lyme Disease is a grey disease. He wants an end date, but doctors can’t give us one. No cure = no promises. It would be easier to know that if we do “A” and “B,” we will get “C” and “D.” Instead, it is constant trial and error.
“Most of my HIV patients used to die…now most don’t… Some still do, of course. My Lyme patients, the sickest ones, want to die but they can’t. That’s right, they want to die but they can’t. The most common cause of death in Lyme disease is suicide. In the current day, if one compares HIV/AIDS to Lyme Borreliosis Complex patients in issues of 1) access to care, 2) current level of science, and 3) the levels of acceptance by doctors and the public, patients suffering with advanced Lyme Borrleiosis Complex have an inferior quality of life compared to those with HIV/AIDS…” –Dr. Joseph Jemsek, Infectious Disease Specialist; Lyme Borreliosis and Tick-Borne infection; HIV/AIDS
To put it simply, let’s take that horrible flu you got last year. The one where you couldn’t leave your bed for days, everything ached, your head felt like it was going to explode and you fantasized about driving to the hospital because you couldn’t imagine living like that for one more day. The only thing that made living like that bearable was the fact that you knew it was temporary. Imagine that life but the pain even worse but this time it never goes away and you don’t get relief. You go to the doctor and he gives you a treatment plan and says, “Do this for as long as you can stand it or as effectively as possible, then go off treatment and see if your symptoms return.” The symptoms return or you have new ones. Imagine this continuing for years and years. That’s kind of how it is, but add about another 30+ symptoms, misdiagnosis’ in the beginning, doctors, friends, and family who don’t believe your diagnosis and there you go. That’s what having a disease with no cure is like. It is a revolving door of madness.
Ryan and I both want and yearn for my healing and full recovery, but we have to see it/get to it in different ways. And that’s okay. He needs to set an “end date.” I know we need the hope that setting a date brings, but I’ve been disappointed so many times in the past with promises of healing and treatments that could bring remission and when they came and went, I was the one left in the wake of the debilitating symptoms that continued and hopes that were dashed. I end up more frustrated and fragile than I was before. I have learned to stop thinking ahead and instead, focus on this day, this hour, this minute. I take each day as it comes. When I do, that’s when I can see the beauty of living even in the really awful days…the life I may have not appreciated otherwise. When I’m not pressuring it to do more than it is able, that’s when my body does it’s best healing.
I have been on IV antibiotics for about two months now. I’ve had energy like my “old self” the past several days. I have smiled, loved, and laughed more than I have in a really long time. It felt amazing. I had my dearest desires – singing, writing, and creating come flooding back to my heart and my spirit. I didn’t realize how important the heart is when the body is in decay. It brings life to the body. It is everything. My personality is ripped from me when I spend day after day in a bedroom by myself with the curtains drawn. When you can’t do the things that make you who you were meant to be, you die a little. You lose “you.” I think the past six months or so, I had lost myself. It is a depressing hole that is almost impossible to get out of without bodily health. I couldn’t write. I couldn’t read. I couldn’t live. Life becomes pretty hollow.
I may not be able to accurately explain this disease very well, but I can describe what the good days are like after experiencing the absence of life. A fog is lifted and it is as if I am waking from a deep coma. Colors are brighter, music is achingly beautiful, food tastes better, every movement without pain is precious, each muscle feels lighter, ears that don’t ring make it easier to hear loved ones, every moment that is not distracted by pain or discomfort is cherished and valued more than ever before. I had forgotten what it was like to have the desire to do something and actually have the energy to do it. After living so long in dark grey, life feels like 3D Technicolor at an amusement park.
I was loving on my little girl before bedtime one night last week. We were tickling and snuggling when she gently grabbed my face and held it in her hands for a moment before speaking. Then she said, “Mommy, I love your smile. It’s the most beautiful smile I’ve ever seen. I love to see you smile.” I realized that probably came from a place in her heart that had missed seeing her mama smile. It dawned on me that I have probably not smiled much in the past few months because of all that I have been dealing with. I have had tunnel vision to get well. Through clinched fists and grinding teeth, I have made it this far and it was a struggle every step of the way. I guess my face showed my pain and struggle more than I thought.
My hope is to continue this path of wellness without the tunnel vision. I want to live, heal, smile, and enjoy life with fists unclenched – even if that may mean a slower gallop to remission. I need to let my body heal on its own time. I have asked so much of my body. I have pushed it in more ways than I ever thought possible. It has walked (trudged) through physical, emotional, and mental trauma and yet I’m still here. I know people will continue to ask when I will be well or how long will I have the port, but I honestly don’t know. I can’t give anyone a timeline. All I do know for sure is that I need to give my body some grace. I hope that others can do the same for me during this season of waiting.