THE AGGREGATE EXPERIENCE - 08-26-10

EXTRA!
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MORNING EDITION
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"THE AGGREGATE EXPERIENCE"

08-26-10

CROSSROADS


THE ROAD TO RECOVERY

Many months ago I began a journey which would test the very foundation of my soul, spirit and will to survive. September 8, 2010, will mark the nine month anniversary of the onset of my GBS. I say mine because it’s no one else’s. The GBS I have is unlike any other GBS because I am the one who had to deal with it, who had to live with it and who ultimately conquered it despite Rancho’s initial reluctance to effectively treat it.

Yes, I have written about my hell and the daily goings on here at the “Ranch” with the hope of bringing to the reader an understanding and appreciation of what I’ve gone through, but my words could never fully detail and convey the level of frustration and despair which visited me on a daily basis. Nor could my words explain the sheer joy felt when I first touched my thumb to my finger, when I first scratched my head or the intense fear I now experience and battle every time I leave my chair to walk.

While in the hospital I created a structure and working paradigm focused on nothing more than recovery made up of two components: weight loss and strength acquisition. Whatever it took to bring my body to a place where it would thrive and my neuro pathways would rebuild, I did. In the best of circumstances, under ideal conditions, the pathways rebuild one inch per month. Think about, three feet of nerve between my hip and foot translates into thirty six months of repair! That’s what lay before me.

To be sure my recovery has been slow and arduous. It was only a few months ago my doctors thought I would never walk again. I was starting to believe them because it seemed no matter what I did, no matter how many hours I sweated and toiled exercising, I was unable to stand, let alone walk with assistance. The thought of never walking or moving my body most certainly has done something to me I still don’t understand.

To the surprise of all I began to walk beginning on June 29, while surrounded by four therapists. It wasn’t long before I was walking longer distances with fewer persons on watch. Just last week I began walking without the ever present right leg brace and with only one therapist. With walking came liberation and a strengthened hope to regain that which was abruptly and without notice taken from me, my life and independence.

To walk again, even with a walker, is simply the truest form of joy and relief one can experience. By way of measure, regaining the ability to walk can be loosely compared to the feeling a parent experiences after finding their child who was lost in a crowd, a parent’s worst nightmare. It’s probably happened to everyone. When it happens, the initial reaction of fear, despair and wonderment is devastating where your life would be readily given for the safe return of your baby. Then out of the corner of your eye, your child’s recognizable gnome like frame comes into view and you quickly focus on the eyes, searching for pain or confusion to make sure all is well; you see a soft smile form on the smooth still unaffected young face and eyes, hidden behind long hair, grow wide with recognition and love all the while reaching out with a small fat hand to your waiting embrace. For that brief moment all life has stopped around you and sound doesn’t exist with the exception of the pounding coming from your chest which is about to explode while your stomach shudders with a dry convulsive heave. The euphoria brought by the find is too overwhelming even for the dispassionate; emotion takes over and you either cry inside or outside, it doesn’t matter, you still cry because of how relieved and happy you feel.

I lose and find my child every time I walk.

My journey has now brought me to a crossroads in my recovery. I’m going home.

A new odyssey will begin far from the pink hued walls of Rancho where hotel style pictures randomly break the monotony of tunnel length hallways. And despite the frequently sterilized feel and smell of the hospital there is a certain comfort found after nine months of traversing the often dimly lit corridors in my power chair, the only noise coming from the rubber tires squeaking over the waxed linoleum floor amplified by the empty vastness of the space. I know the place and I know the people. More importantly, the people know me.

But home with my son has always been the goal and home is where I belong. While at home I’ll be met with new challenges resulting from a new level of independence and a greater degree of freedom. To help me along I will have both a power and manual chair. Notably absent will be the well crafted paradigm and structured lifestyle it took me nine months to develop. I suspect I’ll feel out of sorts initially, after all, the person who left will not be the person returning. It is imperative I maintain a strong focus on the continued objective, complete recovery and maintenance of health. Recovery will not end simply upon my return home. In fact, as a result of the increased freedom and partial success towards recovery, I’ll have to be extra vigilant to insure marked movement forward. Complacency cannot set in; consequently, I will have to increase my intensity and discipline until I advance another workable routine to see me through December which will be the next turning point in my recovery. (Stay tuned.) Another unavoidable variable is I’ll be coming home to a new place. The learning curve will have to be fast and steep. A new odyssey to be sure. I LOVE IT!

WEIGHT LOSS

The weight loss hasn’t stopped. I now weigh 188 lbs. or 85.5 kilos, for a total loss of 115 lbs. As you recall, my goal was to get to 185 lbs. by my departure date currently scheduled for September 1. With only three pounds left, the goal is very doable. As noted last week, however, I may be here for an additional week receiving another IVIG treatment in which case I’ll aim for 179 lbs. WOW!! That’s a total loss of 124 lbs. We shall see. The effort shall be made, whether the body responds is another issue.

An interesting consequence of the weight loss: I am swimming in all of my clothes. My shirts look like dresses. When I depart, I will donate all of my clothes to the hospital. There are a lot of patients here who simply don’t have anything to wear save the unappealing medical gown. Having something to wear will make the patients feel better about themselves.

I urge everyone to donate some clothing, including shoes, to the hospital.

DEPARTURE DATE

All of the doctors agree that another IVIG treatment will aid my continued recovery. The issue is one of coordination between the respective units or wards. Before the IVIG can be administered I need to be transferred to an unit equipped to handle the administration. I’ll know for certain on Monday whether the treatment will be administered before I leave, although it looks pretty certain. If so, I’ll be here through September 6, just two days shy of nine months since the onset of my GBS.

DEVELOPMENTS

By Monday, Forrest and I will be in our new digs just down the street from our current place. It’s bigger and in a very nice area of Sherman Oaks. It’s a newer building with elevators, a gym and underground parking for both cars. Forrest tells me one of the tenants is Robert Blake of Baretta fame (1975-1978). He also starred in In Cold Blood.

Always remember “It could be worse.” And “There’s always tomorrow.”

I leave you with a continuing proverb:

Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.

In other words, be honest with yourself, be honest with others and appreciate the wisdom and discipline of your age.