Imagine me sitting in front of you with both hands open, palms up in front of me. And in one hand I’m showing you a possible disease that will slowly and painfully wreak havoc on every end of your life, home, body, and mind. In the other hand, I’m showing you the treatment course to this disease and explaining to you that if you take this, you will probably die. Not as painfully slow and tormented, but probably rather quickly. This is my biggest fear right now.
The days are passing and I’m not showing signs of improving. I have my up days and my down days. But even in my up days, I’m far from feeling normal. And in my down days, I’m unable to get out of bed. I’ve gone to endless doctors appointments (sometimes up to six or seven a week) and seen endless specialists. I feel like I’m trapped in this endless circle of self induced hope and inability to find the answers or find relief. Outside of how I feel, there are few things I know— I know I never expected to still be here. I thought by now I would have more answers— and if no answers would be provided, I at least hoped that my body would be past this point— that I would be on the road to self healing. I have learned that it is not— or, rather, I should try to be hopeful and say that I might very well be on the road to healing, but the endless circles of ups and downs has unfortunately shown me otherwise.
A good, handful of doctors have told me ‘lyme’. Many of you have written to me and told me to keep a look out for lyme. My symptoms do match with many of those to lyme. No part of me wants to be okay with this answer. No part of me is willing to yet believe it or accept it. If I have lyme, I am helpless. The treatment for lyme? antibiotics? Go back a few months— to almost the beginning of this all and find the reason I almost died: antibiotics. I’ve tried hard to not over think it, and especially not to read into it— not yet. Everything is too controversial around lyme disease, thats for sure. Some say I’m low risk living in Florida. Some say no way, that it really doesn’t matter, it’s truly a possibility. The reactive bands that appeared positive on my test leave me asking questions. Is this lyme? I don’t know, but if it is, it feels like a death sentence given my recent encounters with c. difficile.
When I think about this possibility I have the constant internal battle of shit out of luck combined with trapped in a hard place boxing an endless reappearing optimism that maybe it’s all simpler this this, that it wont be lyme, and if it is, maybe I can some how overcome it anyway….. somehow. I met with an herbalist recently to start a four part regime of herbs. To treat me for multiple things– an anti-parasitic, anti-bacterial, anti-viral, and anti-spirochete blend, to not only help with the possibility of lyme— but any other possibilities that are still open and lingering. As well as things to help with my digestion and weakness. I’m happy to report I’ve suffered no side effects from the herbs, which for me, is nothing short of a miracle— my body reacts with great sensitivity to almost any medicinal treatments, natural or not. The only thing I can do is believe this treatment will work. And if nothing else , at least hope for some sort of placebo effect.
Over and over, a constant reminder flowing through my ears— that the mind is powerful and I have to help my body fight this battle. Even if I’m not exactly sure what battle I’m fighting. All I know is, there is something there. I no longer believe the hopeful words that “this is part of recovery.” I know my body too well to continue to believe this statement. This no longer feels like recovery. Yes, my gut is in recovery, I’ve seen great improvements, but I’ve been sensitive to this body for years and I know, there is something more. There is something that does not belong inside of me, holding me back from fully healing. An acupuncturist I saw said it best, “at this point, it doesn’t matter what it is, you just need to overcome it.” She followed up her statement explaining that it wasn’t meant to be an ignorant phrase but rather, an intention to just keep moving forward. I’m trying.
I’m sad to say that many of my days are becoming emotionally harder. I’m starting to lose hope more often now. I think of Marlowe and I can’t help but cry. I want so badly to believe that things will get better, that my life will return to what it was— or on the preferable days, I want to believe my life will not only be what it was, but somehow be better than before. But I can’t help dismiss the fear that whatever this is will kill me. I feel helpless in the possibility that I wont be able to watch her grow up. That I might not send her to school, cook her meals, tuck her in each night, or show her the world. That everything I had hoped for this year and every year after this one might not be an option for me anymore. I think about what her life will be like without me. I know she’ll be okay. I know Alex will show her love, art, food, a beautiful life— so many of the things I hoped and hope to share with them. But I wonder what their functional life will be like. He can’t raise a child alone with his career. Chef hours wont allow for it. It was already a big enough concern to what the three of us would do once Marlowe started school with the hours he works— but if I’m not there? Then what? And I fill my mind with endless, sometimes seemingly pointless questions, trying to figure out a future that I might not be part of— all in hopes to still, somehow make their future more manageable, less stressful, and more giving to them both. Life is so far from guaranteed. There is no guarantee in any of it— and each day that passes with no sign of my life returning, well, I don’t know, I’m just fearful and tremendously sad. My life and family has been on hold. On stand by for my health. So much sacrificed. With no promise of an outcome. I want my future. I want my future with my family, and especially with Marlowe. I want the life that I was on track for– the life I worked so hard for. There is so much possibility in that little soul of hers. I want to watch her grow up. I know what she does will be nothing short of amazing and I want to be there to see it.
I spent years trying to find myself, trying to make my life, trying to find a comfort in my own mind, body, and soul, and find joy in my story. And I feel like I finally achieved that place where I was satisfied in my continual growth, within me and around me— for myself and for my family. And now the days come where I feel as if the possibility of future is each day being plucked away. What will my day be like today? I don’t know. Tomorrow? I don’t know. Next week? I don’t know. I just want to feel better. I just want to find joy and comfort in the simplicity of each waking day. I had big plans for this year, for my life and I’m not ready to give those up yet. I am not ready. I want to believe that this will pass. That this is another step in my story. That something will come out of this— but more importantly that I will be there to see it.
I’m not sure what to do this with this space. I don’t want to leave it. On the down days, there is no physical way for me to be present– and on the up days I’m not sure what to put here. Sometimes I just want to go on, fun, colorful business as necessary, but then that doesn’t always feel right. My emotions are scattered and I’m torn between how to act. Sometimes I’m hopeful with a positive outlook and I try to embrace that feeling, looking past this all and sometimes I just don’t have the energy. It’s been a really long time since I just poured emotions into this space. It doesn’t feel like it completely belongs— but thats a good thing I guess, showing me how good I’ve had it. How blessed I’ve been. I’m not sure what or how I’m supposed to feel now, there’s no closure here. For now, life just is what it is. All I can do is hope for the best, even in the moments when I fear the worst.
Thank you again and again to those who have continually been there to support me. Through the ups and this tremendous down. I’ll be sharing those recipes I promise this week— I’m scheduling them now, so no matter what comes ahead of me this week, that promise of a bit of good is there. There are a million more thoughts and things I could write and probably should write, but for now I need to rest my mind. I hope you guys all have an amazing week. Whatever is in front of you, I hope you make it amazing.