After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

If We Were To Meet

If we were to meet, most likely it would be at my house, where I live with my mother, her dogs, and my service dog, Camelot. I would be on a couch, most likely with a blanket over my legs and a pillow underneath them. I would have multiple pillows behind my back and under my head, leaving me at a forty-five degree angle, my oxygen tubing resting under my nose. If Camelot was not laying on the couch on top of my feet, he would most likely be sitting on the ground where my hand could reach him.

I would smile and say hello, and begin to engage in chit-chat until I felt you had relaxed enough—and thus would be your time to leave—or until you stayed long enough and began to feel comfortable to ask me about my condition. My moxie and more amusing tales that tend to horrify everyone with my next grand adventure— such as creating a wheelchair-friendly zip line in my backyard—can achieve that goal pretty quickly. My mother has always told me that I am often a surprise to people, at least not at all what they were expecting. Why? I'm not entirely sure, except that I can say that I never know what I am going to say, and since I often surprise myself, it would therefore be easy to conclude that I surprise others.

One friend of mine once told me that I had learned the art of conversation to deflect the awkwardness of my inability to move. While after the first couple of years I regained the ability to move all of my limbs, my muscle movement is peculiar to define. My weakest part is my back, and the more muscle groups I ask to work in coordination at once, the faster I pass out and the longer recovery time that I have. I can have strength if the muscles are limited to use in just my hand, or possibly even to my arm. As cheek movement and the diaphragm are muscles, talking has an effect on me as much as if I were doing my leg exercises. Thus, when I have visitors, I move less than if I were alone. My mental endurance is quite as fine-tuned as possible, so I have been known, on adrenaline, to sometimes drag my body to achieve a desired task. However, the toll is accumulative, and that recovery time can amount to days. 

However, none of the toll would you ever see. That is something private (or at least confined to these blog posts - but you, Dear Reader, won't tell, will you?). The art of masking my fatiguing symptoms is one I have pretty much mastered, and that I am quite proud of. I choose—and strive—for my friends and loved ones to know me for myself and my character, and to think of my physical limitations only as an afterthought. It has been my desire since the day I lost all movement, with the exception of one finger, and it has remained one of my foremost goals ever since.

 It is here, though, that I choose to share what it takes to maintain that balance. For, it requires that I never stop hoping, learning, and pushing myself for more, while not falling into the abyss of despair that, at times, my body can drag me towards. As my body defies doctors’ understanding, my daily life is a bit like that of the old west movies: you know there will be a good guy, a bad guy, and shooting. In my world, I know I will have consequences for every physical act I perform. I just never know exactly what the response will be, when it will come, and how long it will take me to bounce back from it.

These, then, will be some of my musings along the way. 

Meet Camelot

An Introduction