By Teresa D. Cochran
What’s the saying, “We’ve all got something.” Well, don’t we? Whether it’s high blood pressure, diabetes, cancer, multiple sclerosis, scoliosis, periodic paralysis (my favorite), autism, leukemia, depression, bi-polar disorder, OCD, ADD, recovering from bodily injuries…the list goes on. We’ve all got something. These are just a few of the things that the immediate people in my life, that I personally know, deal with on a daily basis. I have to say I’m pretty impressed how most of us handle ourselves each day. We get up, we brush ourselves off, and we live our lives to the best of our ability.
I remember at 15 years old after spending the day at a family birthday party. There was cake, chips, and soda. It was a party, so not unusual food and drink for a teenager. We stayed the night at my grandmother’s 1940s bungalow house. You know the kind with one window AC unit in the dining room, and my grandmother believed in waiting until a certain date on the calendar to even “turn on” that window AC unit. So, the smart girl that I am, I decided to put a floor fan on a chair right over me in bed that night to keep the direct air on me. Little did I know that I was about to create the perfect storm. Two of the three “triggers” for a very rare condition that I have would be ignited.
My triggers are 1) high carb meals, 2) extremely cold conditions, and 3) extreme muscle fatigue. My condition is hereditary and I did not know until that evening that I had this very rare condition, periodic paralysis. I awoke in the early morning and immediately realized I could not lift my extremities, body, or head. I was physically paralyzed from my head to my toes. At this moment, all I knew was that I was paralyzed for life. I was scared to death.
My parents ran over and started assessing me. To my amazement, they seemed to know what the problem was. They picked me up, moved me to the back bedroom, and started feeding me potassium rich foods and potassium supplements. I asked what was going on and they explained this hereditary condition that I had. My response was, “Well, you could have told ME!” Turns out there were many other things my parents could have told me, but there are some things we are meant to learn and experience on our own.
I was not paralyzed for life, but I went on in my life to learn that my three triggers would show back up and they could take me down, literally, in any given situation. My ultimate strategy was to learn how to avoid the triggers, and learned that when two out of three triggers were present it would almost always bring on a periodic paralysis attack.
People with my rare medical condition are called “Zebras,” which means that others with my similar condition do not necessarily have the same “triggers.” No two people seem to be alike. When doctors are trained in medical school they are trained to treat horses, but I am not a horse. I’m a Zebra.
Because I have become so good at maintaining my triggers I can go years without having any symptoms or attacks, that when it does happen I’m caught off guard and surprised. You would think I would remember I have this condition. I don’t. I forget all the time because I don’t wake up to a struggle every day, but everyone is not that lucky.
Some struggle each day to get up, but they do it. Some people are in such physical and mental pain throughout the day and it’s not periodic. They can’t forget about it.
I recently started working with a new colleague. We hit it off! She immediately felt comfortable enough to mention her scoliosis. That day I completely forgot about my own struggle, because I am so fortunate that I don’t “have” to think about it every day. The next day, it came up again. I said, “I’ll see your scoliosis, and raise you a periodic paralysis!” I explained my rare condition, and her response was, “You win.” LOL!
I realize now, I do win. Not because I have the bigger “badder” “something,” but because I am not forced to push through my own struggle at every moment of my day. I’m fortunate in that I am able to set my “something” aside on a daily basis. I do have to make sure I pay attention to my three triggers, but I can get up and live my day without constant pain or physical road blocks. Not everyone can say that.
I think when I first learned about my rare condition and attacks continued to happen over the years, until I learned to control them, I felt scared about my condition and the unknown. Having something that no one else seemed to have never heard of, including doctors. Now, as the years have progressed I have the realization that we are all in the same boat. We’ve all got something. We are all getting up every day, finding our Zebra, and making it happen in whatever way works for us.
I’m proud to be a Zebra. No Zebra has the same stripes. This Zebra is one of a kind.