Do you consider how your mind and body functions to allow a day in your life to happen?
I did not, my well established routine happened independent of my conscious thoughts until Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO) provided a mind-blowing clarity on how every simple and minuscule detail morphs into an expansive thing.
It takes less than 5 minutes to properly brush and floss your teeth (I googled it!), it takes me a minimum of 15 minutes. Firstly, my fingers need to be coaxed into bending around the toothbrush handle, then they need to be convinced to hold the toothbrush throughout the entire process. I have to factor in the 2-3 minute break I take because my forearm literally gets tired while I am brushing and my fingers start to cramp. On occasion, I may need the strength of both hands to remove a floss stick but the “fun” part, is to swish water to rinse when my lingering facial paralysis prevents me from actually being able to hold water in my mouth. I usually have to resort to pinning my lips together with my fingers and moving my head from side to side (I’m smiling inwardly because I am a 100% certain that is hilarious to watch). I was once capable of preparing an entire meal in 15 minutes, now I can only manage to brush my teeth…
Before GBS & NHO, I occasionally enjoyed a bathe but preferred a shower, the feel of water spray was both refreshing and relaxing, in contrast, regardless of how much water is used a sponge bath just does not have the same effect and it was months before I was physically strong enough to take a sitting shower. Even then, I had to be lifted to and from the bathroom as well as in and out of the tub, it was impossible to cup water to wash my face as my fingers could no longer bend at the same angles or fit together, I did not have the flexibility to reach my back or below my knees and I was not certain how hot the water actually was. I also have to mention the back pain and tiredness that came afterwards, there is a meme that reads ” you do not know what fatigue is until you have to rest after taking a shower”, it’s true. It’s also true that taking my first shower (albeit sitting) post GBS was a milestone in my recovery and a highlight in my year; I never considered that at 38 years old I would be using milestone, highlight and first shower in the same sentence…
I have heard of amputees falling because they forget the limb is missing and they attempt to stand and walk, the same holds true with me. The action of walking requires a thought and five basic steps, take away the ability of your brain to communicate with your legs and for your hip joints to be able to rotate and the entire process becomes impossible. There are times when I first wake up or I am in a brain fog that I think to swing my legs off the bed and start moving, it takes a few seconds for me to process that I cannot get that done in one fluent movement, then I think of all the times that I did without giving it a second thought or being truly grateful for the ability…
My wardrobe has undergone an involuntary make-over. What once was 4″ heels, sandals, skinny jeans, dresses and strappy tops has become light weight sneakers a size too big to accommodate for my constantly swollen feet, cotton shirts to counteract the fact that I am always hot and perspiring, tights and shorts. I have occasionally insisted on being fancy and wear a dress but it is not practical as short ones can be revealing and long ones get caught in the wheels of the wheelchair. Regardless of the outfit however, I need help putting it on and taking it off; I previously took pride in how I dressed now I just want to take pride in being able to dress myself and put on my shoes…
I could go on indefinitely, I have not mentioned that even though I can no longer sit cross-legged I still get the urge to tuck my legs under and settle in or that I am unable to pucker my lips to kiss the ones I love or that I cannot stop thinking about my health for just one moment. I have not admitted that I long to be able to get in my car without help and drive myself (my destination does not matter) or that I want to take back all the times I did not want to go to work or that I miss being able to braid my daughter’s hair or watch the sunset from my drive-way. I have not shared that I would love to have a conversation which does not include my health or that I wish I could start yoga even though I never found the time to do so when I was physically able to or that all my meals, including my favourites have the same underlying metallic taste. I have not related the joy I felt when I was able to sneeze for the first time post GBS or the devastation and humiliation I faced when I was forced to ask my daughter for help changing my diapers. I have not implored you to take the time to cherish every moment of your life. If I had, I would not regret that I cannot remember details of things I did before I became ill not knowing it was the last time I would be able to do them.
April 30th, 2017: 451 days with GBS & NHO and I undoubtedly appreciate all that I once took for granted, I now understand that my life was not automatic but that with each breath and every movement my thoughts and the cells, nerves, muscles, organs and systems in my body were at work and contributed to my survival and existence as I knew it.
little or BIG Things? Both, all big things are born of little things and I have never wanted the little things more.
*** little things become big things, cherished moments and everlasting memories***
