“It is only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.” Elisabeth Kubler-Ross
I've always had this mindset that I was indestructible and nothing could ever harm me. I had just finished my second year of college and was ready to return home. I had a stressful semester and going home was my serenity. I was looking forward to spending time with my friends and family, going to the beach, taking long vacations and celebrating my birthday. It never occurred to me that I could become so sick in a short amount of time. I felt like I was dying. No matter how hard I pushed, my body just wouldn't budge. I felt my life was coming to an end and, with spending my entire summer in and out of the ER without a diagnoses as to why I felt so ill, I was so sure I was going to die without knowing.
August came and I was so stubborn and decided to go back to school despite how I felt and how much pain I was in. I felt lifeless, but regardless of that I told myself nothing was going to get in my way of finishing school and if the doctors couldn’t figure out what was wrong then nothing was wrong. I just had to fight through it all. In the midst of all this, I pushed myself so much that I began to lose my balance, face anxiety and have severe panic attacks. I found myself driving home three times a week, calling off work and not wanting to return to campus at all.
Throughout all of this I just wanted to find out what was wrong and how to fix this. No doctor or specialist had a clue to what was happening. I was told by many that it was all in my head and feeling terribly ill just wasn’t something I actually felt. Most of them were puzzled and couldn’t give an accurate explanation as to why I was so weak. Over the past two months I had gone in and out of an emergency room over 25 times. I lost over 40 pounds and I had to withdraw from school in October. It took over five months and one amazing neruomuscular doctor to figure out that I had a rare neuromuscular disease. Only 1 in a million people are diagnosed yearly with this disease called Stiff Person Syndrome. I had these intense muscle spasms all over my body that would never stop or leave. They were so bad that certain sounds would trigger the pain, being startled, moving in certain directions would cause a flare up. I barely slept over the last eight months and every moment of my life was in pain. I found myself crying all day every day from pain. I ended up falling so much that I fractured my foot and had to wear a boot. It was such a heartbreaking time in my life and it seemed to only get worse.
The only solution was to have this intense infusion treatment done every three weeks; that was my answer to bring back some normalcy into my life. My insurance didn’t want to cover the treatment and with constant ER visits to relieve my pain by taking morphine, it felt like a brighter day would never come. There was just so much fire being added to the flame and I couldn’t do anything to make it all go away. I wanted my life back. I was missing out on so much and just watching the days go by.
Finally I was approved in December to start treatment and I was feeling all kinds of emotions. Part of me was scared while the other part was thrilled to know I had a chance to get better. Throughout all of this I lost myself, it’s something that has forever changed me. I no longer choose to let life slip me by despite the odds that have been put in my path. I have now been on treatment for seven months and have come a long way compare to how I was in October 2015. I am able to walk on my own, eat and go out occasionally. I still have two more years of treatment but I have learned to enjoy the beauty of life and never miss a moment to be filled with joy.
After all, we only have one life to live.
