Finding Strength in Surviving an Unknown Fatal Disease
Over five years ago, a tick caught a ride on my cat to inside my home. It bit me on the belly and my life has never been the same since. Most people think of only Lyme disease with a tick bite, which I do have. But I also received a fatal disease, tularemia, in the same tick bite that day. Ticks are carriers of whatever blood they bit, deer, rodents and more. Tularemia is known as “rabbit scratch fever” and attacks the lymph system. If left untreated, it can shut down the major organs leading to death. But if caught early, it can be treated with oral antibiotics.
But when I went to see my primary care doctor after the bite, I wasn’t tested for anything because I had no rash or symptoms. I had no clue about other diseases ticks could carry! If I had the proper testing and my doctor had the proper education during medical school to cover these diseases, I wouldn’t be disabled right now.
So I lived for years with diseases in my own body that are actively trying to kill me, unknowingly. I had many months of health and great times, but also so many times where my body went haywire and I didn’t know why or how to fix it. Now when I look back on those years, it’s bittersweet. I was blissfully ignorant, but I could’ve healed so much sooner if I had adequate medical care.
When my new Lyme doctor told me just this spring I had tularemia, I was so shocked. I had just been seeing an expert in the Lyme field, how could he miss that for the past year? The terror of knowing you do not have control over your own body and how hard it is fighting to stay alive is really more frightening than can be described. My body was a battlefield of life and death. Fortunately, after six weeks of IV medication, my tularemia levels went very high to negative.
Now I’m no longer in the constant crisis mode of survival. I am still alive, despite these horrific circumstances. I’m not just alive, I’m thriving. I’ve moved from going to get IV antibiotics five days a week for hours to now taking one oral antibiotic and herbal supplements to continue treatment. The IV to oral medicine really worked for my body and healing process because my levels of the diseases were so high after five years time, and I have a liver mutation, MTHFR gene, that causes any detox of dead Lyme cells to become very slow and make me feel sicker. I had access to IV detox drips with nutrients and antioxidants, that without I wouldn’t be able to heal. I still receive IV detox drip once a week, and it’s so helpful.
I’m still disabled, unable to work, but my symptoms are so much better. Now I have more time to reflect without having brain fog or dizziness, and the realizations of how close to death I really have been. Any one of the uncountable trips to the ER, doctor or urgent care could have been the last, and no doctor would know the cause. I could’ve lost my life and left no answers as to why or how behind for my loved ones. That reality is so scary that I still can’t really believe it. The falsehoods of being safe because we have great Western medicine have crashed down on me because the CDC doesn’t even recognize chronic Lyme disease to exist, or that other diseases can be passed via tick bite (known as co-infections), like tularemia.
So much has changed and is at stake, it makes me value the people who really stuck it out with me the whole way, and never turned against me. It makes me angry, sad and free of the people who were supposed to love and understand, but used my diseases, symptoms and circumstances against me. My mind and emotions are so sensitive. I feel so much closer to life, and so much closer to death. Being chronically ill, the little things start to mean much more. But actually knowing you might not be here today without a medical intervention creates a whole new intense dynamic.
Before I was sick, the world was much more open as was my future. Now I have limitations that are constantly changing and in need of attention. That feeling of youthful invincibility is long gone, replaced with the body of a 90-year-old. I have some wisdom that most people my age don’t have. Like how much superficial bullshit we focus on everyday really and truly doesn’t matter or make you who you are. You are your decisions, you are your discipline, you are your practice. I don’t fear pain, really at all. I’ve felt the most excruciating nerve pain all over my body, known to be one of the worst, for days. I’ve suffered beyond what I thought was livable, with symptoms I never dreamed could be real. I’ve trudged through a dark and confusing hellish nightmare, mostly alone. It taught me how to live and love during extreme pain and self-doubt. Pain is a symptom, it’s not my identity. It doesn’t have to hold me back completely.
Another change in me has been also less fear of leaving this celestial plane when my time really does come. I’ve spent hours, weeks, staring at my walls and processing what the end really could and will be like. I have no clue where I’m going, if anywhere in the afterlife but I’m not concerned. My respect for the process has grown, and for the people who face it every day in any capacity.
I did have a death of my previous self. I was a full-time Occupational Therapy student. I was a yoga teacher. I had a fun social and dating life. I lived on my own, and didn’t need anyone to help me survive. I could eat whatever I want, exercise or travel at will. All those sacred things healthy people can do, and sick people cannot, change in their meaning and purpose. Losing many friends, with the blame usually on me, was a tragedy every single time. My identity is no longer who I’m friends with, what my job is, where I live, etc. My identity is much deeper, my soul is much louder.
I’m not my diseases, physical or mental. I’m just me, and if I’m not OK with it I’ll never survive. So every day is also a practice of “being me,” what is important to me now, what is positive and achievable now in my current health state. It’s not easy, but the more I go down the path, the more I can see I love who I am and will become.
Going through what I have been and am, it’s hard not to get swallowed in the loss and grief. To getting me through that, I attribute to my fiancé. My one person who loves me unconditionally and will always be my friend and partner. We could’ve broken so many times under the difficult pressure and pains, but it’s only brought us closer and made us stronger. If you have even just one person who loves and understands you, you have everything.
I also believe my steel will to live is the other reason I’m still here. The worse things got, the more symptoms I suffered, the more people turned on me, it fueled this deep rage fuel fire to not only live, but be the best freaking person I can be. When all my immediate family ganged up on me about my disease, abandoned me, blamed me for every problem and tried to manipulate me towards self-hatred and harm, I took the most difficult stand and chose myself. I don’t care what anyone has to say anymore. No one has walked in my shoes. I deserve to live, safe and happily, and I’m going to do everything in my power to make this a reality. I may not have control over my body, but knowing how hard it’s been kicking ass to stay here makes me feel so much stronger.
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Thinkstock photo via moodboard.