Long Time Gone

I continue on this roller coaster ride with my health, and on December 12 was admitted as an inpatient to one of the large university based medical facilities after seeking treatment in the emergency department for rapid progression of my symptoms. Eleven days later, I was discharged home by ambulance without a diagnosis and thus, without any treatment plan or improvements. The doctors discharged me because they were unable to determine the cause, and after exhausting their medical knowledge refused to attempt any treatments without a firm and documented diagnosis. My diagnoses upon discharge were malnutrition and failure to thrive, which translates into I am rapidly losing weight and am unable to intake enough food to sustain myself and provide my body with the proper nutrition that it requires. Cause- they could not even agree amongst themselves as to possibilities; I felt like I needed to ask them to huddle up for 5 minutes and vote or something to reach a consensus. I received the ambulance tour home because the muscle weakness progressed rapidly, even while hospitalized, to the point where I am reliant upon a walker for very short distances and a wheelchair for anything beyond about 100 feet or so, and the stairs that are required to access my room at home are impossible. The journey up the stairs in the "stair chair" stretcher being bumped and swung around by the paramedics ranks among the most painful experiences of my life, due mostly to the pressure sore on my lower spine where there is nothing except skin over the deformed bones from occult spina bifida. I am trying very hard to focus on all of the blessings that I have, on the tremendous feasts in my life, but I am not Pollyanna. I would give anything to be able to sit down at the dinner table with friends and family and just eat all of the foods that I used to love without the nausea, without the gagging, without the inability to swallow anything beyond totally pureed. To go to a restaurant, to the movies, to a store, to chase my niece around and scoop her up in my arms, to go hiking again, and of course to go back to teaching my amazing and wonderful kids - this is all I want. I am 27 and have been fighting hard all of my life to achieve a semblance of normalcy that the world takes for granted. I had it. I had never felt as good as I did the previous year or so, and I savored it by exploring places, by hiking, by really getting into my love of photography, by pushing myself far beyond my normal comfort zone and becoming more confident and assured and independent. I had just about everything I had dreamed of - I was teaching children with special needs and loving the rewards of my job (if you love it so much is it a job?), I had amazing friends, I had the ability to use my body to do things I never thought possible and was in love with nature and being active outside, I had independence and confidence and my own identity was flourishing, I had dreams and possibilities and contentment. I feel like that was stolen from me by my body. I can not teach right now, I can not be active or even get outside without help, I have little independence or confidence and no dignity left and I feel like my identity has been crushed. My dreams are not of great things in the future but of simply reclaiming where I was in the past. I find myself questioning God sometimes why I had to know such joy, such amazing health and physical strength, if it was going to be taken away. This would be easier if I had never known the potential I had in this body, if I had never gotten a break from the illnesses and such because not so much would be missing right now. I feel like I have been a long time gone- not just writing here but a long time gone from who I was, who I want to be, and the life I was so thankfully living. I know that this is definitely not one of my most optimistic journal entries, but it is one of the most real and truthful and open. This is a hard journey and one that I never wanted to take; one I want to find an exit from immediately and return to a steadier, healthier, clearer path. I want off this roller coaster, and I would like a refund because this is not the ride I waited in line for. But I will sacrifice the refund if I can just get off the roller coaster and on to something like the merry go round or the swan boats or the ferris wheel. It is exhausting trying to act positive and not frustrated and angry constantly because I do not want to make those around me feel any worse about this or any more uncomfortable. So I lie, I act, I pretend, I say what they want to hear when really I am angry that this is happening, I am frustrated that I have no control over it and that no answers have been found, and I am sad for all that it feels like I have lost. I think these are absolutely normal and valid feelings, but I protect others from them to try to make this as easy as possible for them and be less of a bother or burden. Being strong all the time isn't easy - never crying if anyone can hear or might find out, never admitting fear, never showing anything but a smile, always using humor to put others at ease and lighten the situation. I wish on every single star in the sky tonight that I can just be a healthy, active, independent, confident, joyful 27 year old teacher again very, very, very, very soon. That has indeed been a long time gone.