How has Lyme Disease affected your life? What inspires you?
Every moment of my life is saturated in it. There is not even the smallest measure in time when I can steal away from it. My body is smothered in pain and my mind and soul ravaged by heartbreak. I can not even remember what it feels like to not be in pain. Now as I think about it and scan my body I can not find a single space inside me that is not in some form of agony. Not one single breath comes and goes easily. Everything I see, touch, taste, smell, feel, and think are first filtered through this crude sponge we call Lyme Disease. Too weak to lift my own body and too stimulated to fall asleep.
I just turned 29 and as I look back I realize that the past nine years of my life have really just passed me by. The whole decade of my twenties has been stolen away from me. The years when you are vibrant and adventurous, the years you spend going out into the world and discovering who you are and making your dreams a reality, or even figuring out what your dreams are. Don’t misunderstand me I did figure my dreams out but most of them have been shattered or smothered out of me. I did have to find new ones, they are far less exciting and I did not build them out in the world surrounded by my peers. I did it at home, one lonely hour after another.
I had always struggled with my health ever since I was born. I had constant asthma, infections, allergies, daily headaches, frequent migraines, digestive issues, constant stomach joint and muscle pain, poor blood sugar regulation, poor temperature regulation, what appeared to be hormonal issues and so much more. It was even once thought quite seriously that I had leukemia, following serous autoimmune type rash that covered most of my body and lasted well over the entire summer. I visited the doctor many times and went through test after test but when there was no obvious explanation they always just decided I was fine I told me to go home. So I naturally I started to tell myself that if it was all normal then I was obviously just being a cry baby and I needed to get over it. Thinking that was just life and not having a painless baseline to compare what I was feeling, I normalized my pains and just compensated for anything out of the ordinary.
Until I was suddenly blindsided when I was barely twenty years old. I had only one more semester to go before I graduated the cabinetmakers course at Georgian College. I was very fit and active, driven and ambitious with no idea what was really coming. It all started with a series of concussions from horseback riding that never seemed to heal the way they should when after some gains my symptoms again started to regress, thus I began my descent into my own personal Hell. My teachers found me sleeping on the floor in corners of the shop, and my friends noticed my confusion and inability to form full sentences sometimes. Brushing it off and telling them I was just fine I pushed myself to graduate. I moved home quickly and finally let myself unravel, when it was over I crashed so hard I was forced to admit to my family how much I had been suffering. For a few years I chased the diagnosis of Post concussion syndrome looking for help. Nothing was really helping and the whole time we all knew there was something else going on but it was so hard to put a finger on. Lyme Disease and co infections in my body all along were, for lack of a better term ‘woken up’ by the trauma of the head injury. The bacteria was taking full advantage of the damage my body and brain had sustained, using it as a way to really dig their feet in.
I was totally unaware, frustrated with my lack of progress I decided I would have to live with it and move on. I held on and tried to turn down a different path although it hurt me to leave behind my last dream. I turned to something that seemed noble. Over three years I worked really hard part time to get my Educational Assistant Diploma. Two classes a week were extremely difficult for my brain and I had to rely on others to drive me to class twice a week.
During my second year there I suddenly developed severe tremors and muscle spasms all over my whole body which would eventually become what is now a rare and severe movement disorder. Once they came they would not leave and stayed for weeks on end. Not only did I have to fight against the pain it brought I had to fight doctors to convince them I deserved to be tested and treated. It took years and finding someone to listen then, I was finally diagnosed with Lyme Disease. I started needing a cane for support as I was falling all the time. My leg muscle became very weak, and my joints would not hold. The worst part was my body would not respond to treatment. The doctors that would listen to me had no idea what to do with me.
During my last year in the E.A. Program I continued to decline and was only able to get out of bed for four hours at a time to go to class, where I felt like I was barely there. I spent the other 20 hours in bed. spasming uncontrollably for most of that time. Often the spasms would take over my chest muscles and would squeeze me so tight I would spend hours gasping for air. Soon after graduating I was in a wheelchair. At this time I was getting up to six injections a day into my legs to control my movements as best as I could. My legs became purple and swollen, the nerves began to become damaged and give me pains so bad I can’t think about that time in my life without feeling the tears well up inside me. It was up to my family to give them to me and I tried as hard as I could to put on a brave face and not to cry out because I could see their eyes welling up with tears every time they had to do it. I remember the worst part about all of this was watching my loved ones. They had to see my body give get eaten away in front of them and there was nothing they would do. This was when I started needing 24 hour supervision for my safety against my symptoms that I still have to this day.
It would take forever to explain all the important details from birth until now that just made me the perfect host for Lyme and many other infections. Instead I want to get to the heart of it. I feel as though everything I ever worked for has been taken away. All the things I used to love more then air itself are gone. Part of me feels like I woke up one day and it is was all suddenly a world away. Just out of my reach, and the closer I would try to move to it, the further it would get. I honestly try not to think about my horses too much because when I do my heart just aches so hard and longs to be close to them again.
I have watched people break their own hearts over me while they sit up with me night after night, and day after day. Holding me down to keep me safe and watching me in agony as spasms in my body dislocates my own bones over and over again, tearing muscle, and bursting blood vessels. Or watching me vomit up everything but my shoes as I sweat through my clothes and cry that I am so cold it hurts. Or as I scream and cry like a child because simple tasks confuse me so much I can not tolerate the frustration, because I forget everything I did today or what I was talking about mid sentence. At times my body is rendered paralyzed and even if I am screaming on the inside no words can be forced out of my mouth. Any bit of sensory stimulation (touch, taste, smell or sound) feels as though it has been amplified by ten million. So the world is stuck walking on eggshells around me. I feel like I am in a glass box and often find myself avoided out of love and worry.
My movement/seizure disorder is triggered by literally everything and I have to plan my entire life around it. No doctor can name it and it makes most of the poor doctors so afraid of admitting they have no answers that they have gone so far as to tell me I am just faking it. But then it makes all the good doctors too afraid to try to help me for fear of making me worse. So here I am still stuck in the middle, and just doing the best I can with what I have got.
Like so many others with Lyme disease I am left to fend for myself. With tremendous brain fog I have to do my own research and figure out what I need and how to get it. Then each time I find something that may help I have to just try it and see what happens. Because not everything works for everyone and it is all trial by fire. Then if the treatment therapy is for you, you have to go through what they call a Herx or healing crisis. Which means you are making things inside you very angry and you will suffer the consequences. Each one of these things only makes up a small part of what is going on inside you so after all that you have to go right back to the books to try to figure out what else your body needs.
I have over one hundred symptoms, I do not have them all everyday but each day I can have any combination of as many as I can take of them. I have to force myself to live some dim reflection of some kind of life, for fear of feeling any less purposeless or more of a burden then I do now already, and with no promise of ever really feeling any better. The truth is I believe that I will get better some day, because for my own sake I have to trust that it will happen. Unfortunately though I will always have Lyme Disease on some level. With this disease you don’t really get ‘cured’ you can go into remission but it can always come back. So you have to live your life doing constant maintenance to keep it at bay. So although not everyone will be able to see it, I will always be fighting.
I have been blessed by the good Lord for my passion for art. I am very thankful for the time I can spend lost in my drawings. So on the days that the pain is too much, emotions are out of control, I can not go outside, when I can hardly move, at least I can draw. Even when it hurts, I always draw. It is a form of therapy that transports me to a weightless place. It helps me find purpose on my own. A new dream. It gives me strength and courage, bringing a little light into my life.
Lyme Disease and this journey I have been on has given me great opportunities to gain perspective. I guess the real question is, what will I do with it?
“Strength, does not come from physical capacity. It comes from an indomitable will.” -Mahatma Gandhi