Truthfully unraveling this MS journey involves talking about loss, about what can no longer be done. My pattern these many years has been to ‘focus on the positive’, to ‘just put one foot in front of the other and march forward’. I am one of those lucky people who had a truly wonderful childhood and have continued to have a wonderful life. As well, I am constantly aware of the many people who are experiencing much more severe levels of MS than I am. The word ‘grateful’ is always in my mind’s forefront.
But today, for this day, I am staring loss in the face and am not going to turn away from it. For today, I am giving it a voice.
This slow degeneration of bodily functions is horrifying to me. It blankets everything, every single thing, with its heavy, heavy weight. Each day becomes a gauging of changes; is it worse today or better? Does that spasticity in my hand mean that my left-sided leg immobility is now moving upwards? Does that slight greying of vision mean the optic neuritis has returned? Should I continue my learning of braille which I began 25 years ago when it seemed my vision would remain compromised? (I thought learning braille was a very creative and proactive solution to my dilemna. My vision returned and the braille was set aside.) Walking to the barn yesterday went smoothly; a new drug for bladder control seems to be working. I am heading out soon to a local community event, fingers crossed for the same success today.
Is this like aging? Is this an experience similar to that of the elderly? I imagine the sorrow of the aged as they live with bodies that are quitting; bodies that are no longer obeying the rules of the past 70, 80 or 90 years. Such treason. A gangplank with boards of varying lengths.
Is there a greater sorrow with this degeneration at a young age or is it all the same? Is this loss more difficult because I am only in the middle of my life, at a stage where, finally, so many things make sense and the future looks wide and inviting? Or are we never prepared for this slow, slow disappearance, young or old?
It is the physical grace I am missing with a tangible longing. I have always been comfortable in my own physical presence, secure in my physical space. But today I leave the house with a cane and a wish. And, yes, I know I am still ‘me’. I know my soul is still my own strong soul. I know that I still breathe in this summer air and am still thrilled by what I see and hear; the eagles and the ravens, the blue wisteria swollen with scent, my dogs running, playing, wrestling. Joyful things that fill me to bursting, still. But with a new sense of being alone. Not alone as in lonely – my life is filled with love. But alone in the constant goodbyes to bits of me. And within that aloneness is fear. Will I summon the grace that will be needed in the face of physical dependence on others? Will I offer the grace that allows others into this experience with me or will I hold them apart, not wanting them to witness the deterioration?
Today is only one day. And tomorrow is another. Looking ahead is only guesswork. The sun is bright, my dogs are at my feet and I’m heading out to an event filled with music and camraderie. And that is all good.
I take a deep breath and I’m out the door. Taking all of me with me. Joy, fear, trepidation, wariness, weariness. The whole ball of wax.