This is part of the Brejcha Personal and Disability Resource Site. Welcome to:
©2001 F. Alexander Brejcha
I have just gone through an experience which would make many people suspicious and cynical regarding life, people, and the world of medicine. The reasons begin with my extensive disabilities – which are a legacy of twenty years with multiple sclerosis (fifteen of those in a wheelchair) – and are compounded by recent complex surgery which stranded me away from home for over five months. I was bounced back and forth between hospital and nursing home, and then sent off to a nursing home to recover (and then out of work at home recovering further for another six weeks). It was an experience that cost me over $12,000 between lost or reduced pay, plus deductibles and other fees. And after all this I am too weak to be fully independent, I will soon be forced to move because my apartment complex is re- building, and to top it off, my fianceé had to go back home to Russia for several months for medical treatments for her own M.S. unavailable in America and to tie up loose ends at home – BUT, I am a very lucky man!
And no, I am not a masochist or insane (well, not certifiably). But I am a very lucky man who has a great deal to be grateful for.
I am back at my secure full-time job, I have the love of an incredible woman who will soon become my wife (Note: became my wife on April 17th, 2001); and in addition to emotionally rewarding volunteer work and an award-winning disability resource web site where I get great letters of appreciation (the Brejcha Personal and Disability Resource Site at http://www.netreach.net/~abrejcha), and I have a freelance sideline as an award-nominated author of fiction and non-fiction ( see bibliography with some reprints).
My life is good! But I am writing this because in today's cynical, impatient, and jaded world, everyone moans, groans, and complains, but few bother to appreciate good things and good people who help. I could be like those people - or I could try suing those who were partly responsible for my extended hospitalization - but that's not my style either.
Aside from the fact that suing doctors is often more trouble than it is worth (since they can bring in a dozen experts to swear their treatment was proper), there was no intentional malpractice involved; just ignorance on both my part and that of the doctor – an excellent surgeon I still respect and will leave unnamed.
Instead, I wrote him to explain the shortcomings of his ?treatment' and what I have learned – in the hope that others be spared what I had to endure. And in addition to this essay, I am writing an informational "care and prevention" article for an excellent magazine aimed at people with disabilities, and as an educated ?consumer' who works at a hospital, I am also doing a clinical commentary article for a surgical journal to educate other doctors.
But, with the negatives addressed in a constructive manner, it is time for the positives – along with a few tips on attitude adjustments in difficult times.
First of all, I need to say that this experience would have been difficult to survive were it not for my supervisors and the administrators at Tenet's Graduate Hospital in Philadelphia. They were incredibly patient, though during my long absence they could easily have let me go and filled my position with someone else.
But Graduate, my incredibly loving and supportive fianceé (now wife), and my unquestioned return to work and the multiple happy greetings I received when I started back, all served to bring home how much I had to be grateful for. Consequently, I wanted to acknowledge some other fortunate experiences and terrific people I have encountered through this difficult ordeal (and my apologies to any who get edited out because of space) – with the hope that others look at people and situations around them a bit more appreciatively.
Along with the aforementioned, I have to extend a resounding "thank you" to Dr. David Kim, a wonderful plastic surgeon at Paoli hospital who, through extensive and sophisticated surgery, repaired a major pressure wound skillfully while keeping me comfortable without the need for any pain medicine. And my gratitude also goes out to the wonderful nursing and physical therapy staffs at Paoli Hospital and Manor Care Nursing Center in King of Prussia where I went for preparatory surgery, recovery, final surgery, and then more recovery. And I have to commend the incredible staff at Bryn Mawr rehab who helped me recover from those previous months of lying non-stop in a specialized bed, in order to get me reconditioned and ready to go home.
I want to point out that in these days of supposedly 'managed care', reduced numbers of nurses and support staff at hospitals face a daunting task of caring for more patients and with a higher acuity than ever before. It is easy to criticize an apparent ?lack of care', but it is also important to realize how much more is expected with so much less support and fewer resources. Instead of complaining, I call on people to approach their legislators to support attempts to eliminate the inequities and compromises forced on more and more people.
And, once in a while, appreciate the sincere efforts of those who do try to do a little extra despite a system which discourages such behavior.
On that note, I have to thank the state Vocational Rehabilitation office and the people at Quality Coach who have provided me with and kept two wheelchair converted vans riding well past the century-and-a-half mark (and are right now converting a third one); the United Disabilities Services of Lancaster and the Chester County Cerebral Palsy Association whose joint attendant care program is helping me to keep working again now that I am back home. And emphatic thanks to Residential Living Options, Inc. a non-profit agency which is helping me in my search for a new home – and Open Hearth, Inc. whose generous grant is making it possible.
And finally, I wish to add personal notes of thanks to a few people who will recognize themselves and who helped me get through a frustrating, expensive, and prolonged experience (there are others also, but too many, I'm afraid, to list all of them): But I must thank my late step-father's cousin Alec who has taken on a paternally caring role now that both my birth- father and mother's husband of thirty years recently passed away; my ?brother' Joe, who is helping me at home immensely while my fianceé is away; the staff of Good Fellowship volunteer ambulance company who quickly and amiably responded when I got stuck somewhere at home; Marge and Tony, who frequently brought my fianceé by to visit me and have helped us in so many other ways; and Louise, who has helped me in my efforts to help my Alzheimer's-affected mother – whose superb care at Tel Hai assisted living is provided by Eric and Kirsten, my step-brother and step-sister who are managing my step-father's estate.
All in all, I want to let people know that there are still resources, agencies, and people out there who care and help – many not for self-serving reasons, but because in helping people, they do more than help those individuals, they help our society retain an air of humanity in a time when it can all too often seem as if there is no hope. But there is – even if at times that help has to be sought out. And sometimes the key to getting that help is to offer what you can of yourself. Personally, I have found that my years of helping other people have had a way of coming back around (even from strangers). As a rather well-known book recommends: "Do unto others as you would have them do unto you". It works!
To comment or respond, write to abrejcha@netreach.net and read more at http://www.netreach.net/~abrejcha .
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