Week 5: Piece of myself

Trapped
To be able to do….must be nice. Normal people complain about running their kids from place to place, that they need to do laundry, or they are tired and need a vacation. I truly wonder what is would be like to have a normal life, where my pain doesn’t restrict my ability to do ‘normal’ ‘everyday’ things. I wonder what it would be like to be outside and a have the nice spring breeze, which wafers across my face with the smell of freshly mowed grass, bring a smile to my face instead of a grimace in pain. I wonder what it is like to be able to go into a gymnasium and not feel all the pain from vibrations across the floor, to not notice the sound waves in the air or that the snowplow is about two blocks away from my house. I wonder what it would be like to be able to dress in something that I like because it looks good instead of having to find the right material that will be soft enough. It makes me resentful and it is called RSD.
When you get a paper cut on your finger it isn’t bothersome until lemon juice irritates it. However, you know that it will heal and go away. I feel like I have paper cuts all of my left side of my body and every sensation, a hug, a breeze, a brush of the skin, is my lemon juice. It is 24 hours a day 7 days a week even with narcotics and twenty-eight pills a day. The only way to be able to go on vacation with my family is to have to be on morphine. It is a constant burning pain and called RSD.
The guilt that I feel makes me tormented inside. To have parents involved in the medical field and not be able to help their daughter, to feel absolutely helpless and know that it is my burden. To know that not only do I have a difficult life but I have robbed my son and husband of having a ‘normal life’ as well. I once asked him to leave me and take our son with him so that he could have a normal life but he wouldn’t go. He restated our vows, “In sickness and in health”. I asked, “When does the health come”. I know he loves me but, the last trip to NYC for a doctor’s appointment my husband said, that if something happen to me and he met another women, would it be ok for him to ask if she has any medical conditions. I laughed and told him he deserved the best. When my son was five years old he told me he never wants to have children because he wouldn’t want his future wife to get ill. To know that the only reason my son has to see a therapist is because of the life I have provided him with. To not be granted life insurance anymore because of the health risks associated with my treatments and medicinal exposure. I am a liability not an asset. It tears me up inside and called RSD.
Can you image the freedom of dancing freely with my son or running through the lawn or just participating with his afterschool activities? I tell every one that I try to control my disease and not let it control me. Who am I kidding? I am trapped by this neurological disease. I go through hell every other month, by doing Ketamine infusions, just so that I can continue to teach and be a provider for my family. To get diagnosed after two years and 21 doctors and yet still try to find something that will work long term. Imagine never escaping the burning even in my dreams. I have had this condition for almost half of my life. I can’t remember what it is like to be ‘normal’, to feel the pleasure of a gentle touch, the softness by combing my hair or the refreshing feeling that a shower brings. To know that I have done every approved procedure possible for my condition and I only have one chance left to teach for a few more years before I have to go out on disability again. To know that there is no cure. It has put my life in a cage and it is called RSD.
Silver Lining
I wouldn’t be alive today if it weren’t for the support that I have around me. My husband is a Saint. My parents do the best they can. I had no idea how many people cared until over sixty people showed up at my walk, and we have raised more than $18,000 for my procedure. My colleagues check in on my every block to help me get through the day. My students who want to do anything to help me. My six year old son wants to mop the floor for me. The cards that come in day after day with warm wishes in hope of relief are inspiring to me. It makes me see the good in people and it comes from having RSD.
To realize the smaller things in life as they happen are the parts to enjoy. This disease makes me stop and smell the roses, be grateful for the days that we can sit at the dinner table as a family. It allows me to see the bigger picture and the real priorities in life. I see things from a different point of view than I ever would have done before. It makes me happy when I can get something like the laundry done independently. I see the impact that my condition has on my students faces when I tell them that I could make more money being at home on disability, but I chose to be with them. It is an enlightening experience and it comes from having RSD
I was always a strong willed person but this…this has made me stronger. My determination, will power and hope make me keep fighting. I am a soldier. I will stand on my own. I can enjoy the things that I have. I will see me son grow up to have a happy, healthy life. I will grow old with my husband. I will continue to work for as long as I can. I will live my life to its fullest. And I will win. It is the silver lining and comes from having RSD.