- Posted February 23, 2013 by
Rensselaer, New York
This iReport is part of an assignment:
The written word: Your personal essays
My broken path
Being diagnosed with an illness, no matter what illness it may be is extremely overwhelming.
where do you turn?
what do you do?
who will be there throughout all the awful things you have to go through?
who will be there in the end?
Most importantly, what will the outcome be?
There are so many questions racing through your brain, it is hard to keep up with yourself and I only just named a few. The fear of the unknown is very frightening and this was my reality for a very long time. Let me assure you all these questions will be answered in time and in your favor if you let them.
After being sick for what seemed like an eternity, on December 8th, 2011 I got a phone call from an urgent care doctor informing me that I had Lyme disease. Oh, what a relief! I had been sick for months, I can't even remember how many exactly. However, the worst of it started in August of that year. I had so many symptoms. Multiple bladder infections, blood in my stool,severe chills, major issues with temperature regulation, chest pains, extreme fatigue, (if I was not pushing myself through work, I was in bed), massive sudden weight loss. I was 115 pounds when I lost 14 pounds in a 10 days. I experienced major complications with eating food. When I ate anything solid, even liquids that were not water some days would cause swelling in my throat. At one point that year I was forced to shop the baby food isle for food, doctors orders. I had a condition called air hunger that comes from the oh so wonderful confection Bartonella. Otherwise known as cat scratch disease but caused from a tick and not a cat. It's just a different form of bacteria. I experienced major neurological symptoms; sever brain fog or as my fellow lymies would call it, "Lyme brain", slowed process of information, visual disturbances and vision loss, severe anxiety, tremors, losing things, getting lost, complete disorientation, word-finding and reading issues. Allow me the pleasure to read you a big, complicated word from a book or article and hear me stutter. Ya know, like a child learning to read and sounding out a word. yeah that's me. English was my best subject, excelling in reading and writing starting from the very beginning of my education as a preschooler. I have awful coordination issues. Lets be honest, I cannot blame that completely on my disease, I have been a clumsy individual my whole life, now it is just gotten a lot worse. There are so many symptoms that I have experienced that my "Lyme brain" will prevent me from sharing and that is probably a good thing because we could very well be here for an eternity.
Pre-Lyme,I was a lost twenty something year old who read a book and swore it was written about me. I had such a connection to this book, when the movie came out for the first time in my life I did something by myself and experienced it alone. The book/movie is called Eat, Pray, Love and in the movie Julia Roberts plays the part of fabulous Elizabeth Gilbert who after many disposals of relationships gone stale, and feeling completely lost travels to three beautiful countries in a desperate soul search. For me, it was extremely inspirational and just the sort of wisdom I was seeking at that point in my life. The relation between Elizabeth Gilbert and myself was unexplainable, but I had something she no longer did, my youth. While she was in her mid-thirties, I was still a baby in my early twenties and I had already started my search. A few months before I went to see this life-changing movie I rented an apartment for myself and my two cats, which was a first in my life. I had been terrified to be alone my whole life, in any situation or anywhere. The situation did not matter. Now I was forcing myself to face this fear and I did for two years. Not always successfully, I still had a lot of people around but I did make myself face it enough to where I can almost put it behind me. I do not like to be alone, that is a part of who I am and just one of many things I learned in my own soul search. However, I have obtained a strong belief that time with yourself is a privilege and necessity at times. It gives much needed reflection and so many realizations when there are no biased opinions. There is only the sound of your own needs that long to be fulfilled and your own feelings that need to be dealt with that are pouring out of you. There is only the sound of your own voice leading you to the path that you are truly seeking.
During this time, I learned that I have this innate passion to help people. I wanted to educate my community on how to take care of themselves, how to make the right choices, what to do to prolong your life, happily and healthily. I had a plan and there was not a doubt that I was going to make this happen. I wanted a transformation. Who knows, I was so high on life, maybe I could help change the world. In the fall, I would attend Schenectady county community college for two years to earn my associates degree in nutrition. Then I would continue my eduction, working towards a bachelors degree in nutrition at Russell Sage and I was not about to stop there. I planned to finish my educate in naturopathy at the university of Bridgeport. Throughout all this planning I started to really have a passion for cardio, weight training and sculpting. Exercise! Something I had a battle with all my life, mostly because I never gave it a fighting chance. I would work out a for a few weeks and I would make an excuse to quit. This time, I pushed and I pushed myself to transform my body so when I looked in the mirror, the person looking back at me would be imperfectly fit, strong and proud of who she was. I say imperfectly because there is no such thing as perfect, especially for a woman. I could be in the prime of my life and have what I like to call "a girl day." "A girl day" is one full of emotions. Nothing is going right, everything is tragic,and the world and everything in it is against me. Let me hand you a violin and make sure you plays me a sad, sad tune. Fortunately, these days were few and far between for me. I grew to love the gym, to watch the transformation, to feel the confidence and health pouring out of me. I fell in love with my health and I made fitness a personal priority in my life, I grew to need the release it gave me.
Lyme active and unaware started an unraveling destruction and depression that I would endure for quite some time. My grandmother had just relapsed from multiple myeloma, my poppy was diagnosed with bladder cancer and I was worn out, emotionally and physically. I would go to class prepared to take a test and bomb it, my head just was not there. I was exhausted, sleeping every opportunity that presented itself. I ended up dropping out of college my second semester. I thought that I was just under a lot of stress and pressure and that I needed time to regroup and relax. I also thought that maybe I could be depressed and in a result became lazy. Either of these could hold true to the situation, I guess I will never really know but as time progresses, I think that very well could have been the start of my illness or the start of my symptoms rather. As I look back on that time, some of what I have felt like over the past few years post Lyme I experienced during this time, just in a milder form.
My need for the gym became a burden. Although I still pushed myself for about six months, give or take, it had become too much. Even with my best fight, I slowly gave it up to exhaustion. Eventually the only thing I had left was work and sleep. I thought I was losing my mind. Throughout that summer, I tried to keep up with my friends lives which I once lived as well; staying up all hours of the night on the weekend, going to see our dear friend sing his heart out and soothe our souls, as we danced ourselves silly until they eventually kicked us out. Believe me, this was not my issue. I did this while I worked full time, took four classes and had a 3.6 average. I worked hard and I treated myself to some release on the weekends but it became too much. While I tried to keep up with the activities, I was asking to be brought home early and eventually my party pooper ways got in the way of wanting to have a little much deserved fun and I stopped going and consequently stopped being invited most of the time but i did not feel rejected. Instead, I felt relieved. I no longer had to feel bad about being standoffish to my friends and making excused on why I couldn't hang out with them. How is anyone supposed to understand that much exhaustion and the need to just lounge around and do nothing when you are supposed to be a young healthy person? Believe me, no one does, not even the person experiencing it.
Post-Lyme and still diseased has brought many challenges to my life throughout the past two years. The emotions of having an illness that debilitates you and takes over your life is a really tough acceptance one has to come to and believe me, it is not easy. In the beginning, I had so many tests, there were so many doctors and so many unanswered questions. It was very frustrating. After a few months of dealing with that stress, I had the pleasure of taking care of an ailing woman and with that brought a lot of free time on my hands. During this time, I experienced one of the very lows of my illness and my doctors did not believe I was still ill and were unwilling to give me their guidance and support. The doctors who are out there, that were willing to help came with a price and it was a price I could not afford at the time. Once again, I felt lost and hopeless. I used this time to renew my faith. The faith that had been instilled in me since birth and I prayed. Everyday whether I could find the words or not, I made sure to pray for wisdom, strength and more faith. Faith is something I struggled with my whole life. Of course, I believe in God. I believe in heaven and hell and all that goes with my Christian upbringing. I guess when things go wrong in life, the battle is keeping your faith. In my personally experience, that's when your faith should be the strongest. No, we never understand why things happen.
Why did I get this disease?
Am I being punished?
Why is it every time I get more blood work and go back to the doctor I have another virus, a confection?
God, why are you making it harder and harder for me to get well?
Why are you challenging me?
Why did you take another one of my friends at such a young age?
Why wasn't it me?
What is my purpose?
These are just a few of the many questions I have asked over the past few years. I have learned that I will probably never receive an answer for most, so why be focused on them. It is just going to drive me crazy.
Have I let this disease take my happiness?
Have I let this disease dictate my life?
Have I become extremely depressed and lost and confused?
Like I said, this is challenging and every day is a new challenge. I have asked and asked and asked for wisdom and maybe this is my wisdom. How determined I was to follow my plan, exactly the way I planned and what happened? I'm not living according to my plan. God has another plan for me. I strongly believe I am in the right place at exactly the right time in my life. That's what faith is, believing and while I have questioned my faith many times in life, during my illness has not been one of them. If anything I think my faith has become stronger. When there was not a doctor available to me when i needed one, i decided to be my own best advocate and find the answers myself. I have to say, I have done a pretty job with this and i continue to educate myself on this disease every day. I want to learn everything i possibly can to help others who feel hopeless, like i once did. I finally have a doctor who is my partner and we work together to find what my individual needs are. Everyone is different and this disease affects everyone in a different way.
My life has not been easy for the past few years and for a part of those years and inconsistently I have felt like I have been cheated and treated unfairly. I felt completely sorry for myself. I guess that's a natural reaction when you have fourteen different viruses and two different bacterial diseases making your body their nesting place and making home of your organs. What is fair about that? I had a plan and I was just starting to really live my life. So suddenly things can change. When I was at the happiest and most surest time so far in my life, I was dealt a challenging hand and maybe this whole time I have just been playing it wrong. I have looked at the glass half empty. It is easy to have a half empty glass when you are forcing yourself to stay awake at night because you are afraid you will not wake up. It is hard to see things half full when you are so unsure of your fate. I have been walking down the straight healthcare path for about five years now and maybe I needed to find a broken road, leading me to where I am now. I have Lyme disease and like most people, I never thought Lyme disease was anything serious. You take a pill for a few weeks and get well. Maybe if you are lucky enough to just get Lyme disease from these little blood suckers, but I am not sure how much of that I even believe. I have been unluckily lucky because while I have many viruses and two debilitating diseases, throughout all the challenges I am not in that bad of shape. I definitely have my days, my weeks, my months but I can walk, I can talk, I am not paralyzed, I can work, I am not blind and the list goes on. In case you were wondering, all these things can happen to you with this disease, with the worst resulting in death.
I believe you have to make your own challenge for yourself and that is seeing things in a different light, seeing the glass half full. It's about changing the conversation. I have allowed this disease to take over my life and that is just not ok with me. I have a great support system of people who try to understand what I am going through, and while I don't believe they will ever get the whole picture unless they experience it themselves and I pray everyday God spare them of this illness. Those very few people I have in my corner have chose to fight right along side of me and I am not sure i would be able to do this alone. I appreciate you and love you and probably do not tell you enough but thank you for fighting this battle with me. Support says a lot. It mainly speaks unconditional love because when life hands you a storm, most people run for shelter. They don't wait with you for the rainbow and I will get my rainbow. The ironic thing is what I have gained through all of this is wisdom, strength, and faith. Is that not what I have asked for this whole time? God is truly good.