Once again, I have had to sideline my life as medical appointments take center stage. It is so hard to trust that I am doing the right thing. I have mostly been doing really well for these past several years and, because of that, I’ve been moving and growing in so many areas of my life. Now, once again, I find myself putting these things to the side so that I can focus on my health.
Lyme and tick-borne infections are so hard to heal from. There is no one, established direct route to health. For me, it has very much been like peeling an onion: I deal with one thing and get better, only to discover another layer beneath that needs an altogether different sort of attention and treatment. I am doing so much better—the years when I spent most of my life in bed are long behind me and I hardly worry about flare-ups anymore. It’s been two really fun things that got me motivated to keep going: a trip to NYC and an upcoming trip to Kenya.
I’ve limited travel in my life for years, even though I love it, mainly because, since I got Lyme disease, it’s been really hard on my body. And even though I climbed Mt Shasta and Half Dome (up Snake Dike) last summer and was fine, when I flew to San Diego a few weeks after my Yosemite trip, I ended up in bed for days. So having many long flights looming made me realize that I needed to figure out what it was about travel that limited me so much. My Lyme specialist pointed out that all my symptoms coincide with a lack of oxygen, so I started Hyperbaric Oxygen sessions and my flight to NYC was fine. The flight was a breeze for me, I had no Lyme symptoms or even any fatigue at all. It was like flying used to be for me: just get on a plane and go. So I am committed to the hyperbaric Oxygen treatments in these final weeks before I head off to Kenya—I am so much brighter and more awake with them—but as I shunt the central parts of my life off to the side to make room for daily sessions (and lets face it, with getting to the office, getting setup, having a 90 minute session and then getting home, it’s a full three hours of my day), I find myself nervous and anxious about all the things that I am not doing: the book I am not writing, the friends and lover I am not seeing, my art projects that sit in a pile in my mind, wondering when I get them done. Schedule-wise, I am back to where I was years ago, when all I did was go to work, go to doctors’ appointments and sleep. These days, I am again running a narrow circuit in my life and the things that give me the most joy, the things that I value so much are left by the wayside. It is true, I know, that without health, I have nothing. I have experienced that already and this is why I am once more fully engaged in treatments that are working (and incredibly, without side-effects, if you can imagine that): because I know that I without my full health, I won’t be able to do the things I most want to do and enjoy and engage in. But it is so hard to be in the middle of letting go of the things that matter in order to take care of health concerns that don’t bother me in my daily life. It is hard to trust the process, hard to trust that I’ll get through these next six weeks and my life will still be waiting for me at the other end.
Six weeks isn’t long, I know, but it’s once again a return to where I was so many years ago. I was living in NYC when I was diagnosed and left to move in with my parents because I was so very sick. I got through so many years of sick with the belief, that somehow, when it was all over, I could just go back and pick up where I left off. And then I visited NYC last month, a full decade after I left, and finally had to face that I still fostered some fairytale belief that this whole Lyme diapause thing has all been a terrible dream. The city has changed; I have changed. I am no longer 24, my friends have moved on. So jumping into six weeks of treatments, six weeks of putting my life on hold, is terrifying. What happens at the end? Do I have to rebuild my life from the ground up? Intellectually, I know that this is an absurd fear, that six weeks is nothing, but in my heart, it’s me once again grappling with the world moving by while I sit and wait for my body to heal.