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ERIN'S STORY
In 1975 my knees starting hurting badly......then..in... July of 1976, I entered the hospital for what would be one of my many surgeries. Little did I know of things to come..this the first domino being established and forming the pattern of my life regarding my medical problems. Since all the dominoes have not fallen awry I can say that I have learned a great deal which I wouldn't have without all my medical peccadilloes. I can say in all honesty that I now have knowledge and a set of personal standards that would have been very different if my diseases and disorders did not occur! One learns to reach into the depth of your soul, the core of your being and bring out a strength one did know was dwelling there to be drawn upon. Without my dwell or well..., I would have been lost.
My first surgery was on my knee in 1976; second knee surgery in 1977. I had chondromalacia of the patella and my kneecaps (patellas) were not attached and thus floated. As a further complication in 1987, after my first knee operation I had two pulmonary embolisms, two blood clots in my right lung and they both left a memorable scar in my right lung and in some of my blood vessels...different docs have different opinions. After both knees were repaired I tried to resume my dancing career and study dance at the University of Maryland. I had studied in New York at Joffrey..and had been offered an apprenticeship by a modern dance company at the age of sixteen. The Knees..were the beginning of my long...and terror filled story. My knees failed in one of my dance classes at the U of MD.... so I should have known that there was more to come. Still at the U of MD...I received an injury from a drunken football player who tackled me; he thought this was a cute and funny approach to meeting a girl. I forcefully informed him that this may work on the field of play not in the social arena...I suppose there was no discernible difference for him as he looked blankly at me with an expression of absolute befuddlement..he had that silly Duhh Look that a lot of jocks wore on their faces...as if to say "you do not worship me"!
The third surgery was on my neck. An anterior fusion for a ruptured disc at C5-6. This is in the cervical spine. This surgery had far reaching consequences. This fusion led to non-union, much nerve damage which in turn became my major reason for disability.
In my pursuit to find help....I was told repeatedly..that I was emotionally ill..and that the fusion was stable..of course it was not...a crack ran down the center of the fusion...only a bit a scar tissue held my neck together..for thirteen years. After these experiences with medical science I had decided never to see another doctor as long as I lived or until I had a baby.
You see I was told I would never work at all. That I had an emotional illness that caused me to invent these symptoms and act them out for attention. They claim this was due to an emotional or chemical imbalance..they quoted depression and a host of other mental maladies instead of trying to find the root of the problem. Indeed it was a root, at the C5-C6 root there was much nerve damage which caused pain and went down into my arms and hands.
I did learn, however, unless you agreed with docs you got treated in this pompous and up handed manner. This was when docs did not admit they were human a short 20 years ago. So, off I went into life. College was out as I could not sit at a desk for more than ten minutes without wanting to tear my hair out in pain. Some people cry about pain, I was raised that it was something you overcome and triumph over. My mother has had about thirty surgeries to date and she owned her own business and was quite successful until illness overran her life.
Always a fighter and survivor she now enjoys her books and good books. Mom now reads all the wonderful she dearly desired to in the past and watches all the movies that she wished she had been able to watch. These she missed while she while she was raising us and running her business. Quite successfully I might add! She has been a true inspiration on many occasions.
Truly, if I had been raised by two different people I would never have been able to cope with my situation. The many surgeries would have overwhelmed me, but when I compared my list with my Mother's formidable number of surgeries and diseases which include a brain tumor, benign thank God, but still it impinges and causes problems.
So, instead of heeding the docs orders that I would never work in the workplace as I was too fragile I went to secretarial school and learned how to be an secretary. Typing, shorthand, filing and such skills. Very challenging after a failed fusion! I passed and sent out résumé's. The first response was from an attorney and the second from ABC News. I went for an interview at the network, went for a physical hehum which I passed and was hired. My first interview and I took the job. I called the attorney who also offered me a job and said I couldn't possibly turn down this opportunity.
I got married in 1982
and started work at the network a couple of months
before the marriage.
Things went well for awhile but I found that my neck was hurting more and
my stamina and endurance was waxing instead of waning. I was only
25, after all, but I think in my heart I knew the truth and decided I would
wring every precious moment out of life even if I had to strangle the poor
dear thing we call life. My job went well, my reviews were
excellent and since I had no aspirations to reporting or such things in
broadcasting my boss was delighted. Of course, there were many rough
spots as things became difficult with my neck and my marriage started to
falter. I look and see many red flags which should have been glaring
but were not as I was raised to believe on did not divorce. Once
one made a commitment and/or a promise or gave one's word one did not welsh
on your commitment.
I wound up in the ER a few times with horrible pain and the doc gave me some pain meds and it got me over the bad hump. Weather and stress played a major part in my pain, still does, though now I have modified my life according to me, not Garp!
Eventually, all good things come to an end. In 1987 I was the proud parent of a beautiful baby girl. Children are such a wonder, truly gifts from God, and truly precious! I went back to work after a three month maternity leave full of mother guilt. You see I had turned down a very unusual offer and was informed that my husband should have these opportunities..not little ole me. My husband said he was now coming into his own and since we wanted children and we both wanted me to stay home, this job would be a major interference in our lives. I was crushed but I went on as a secretary thinking things would work out, that my dreams would come true! I took daughter to the doctors as she had a persistent cough for quite a bit of time. Too long in my estimation, so off I found the best doc I could in my plan as I had just joined an hmo not thinking that my husband could afford to pay full medical bills. I had very large misgivings about HMO's which bore fruit. Well, the doctor took one look at me and said that he wanted me in his office the next day. He settled for the next week. He said that day with my daughter that something was very wrong with me and that we needed to correct it. He was a brilliant diagnostician and was the first doc to help me bridge my total lack of distrust of the industry and members of medicine...namely doctors!
Three years later I gave birth to our son. A scheduled C?section was ignored by the standby doc, as my doc was off on a long weekend and my son came three weeks early at almost eight pounds...such a wonder he was and still is, both my children are gifts from the makers of our universe. I had endometriosis which is extremely painful and my tubes were totally blocked ! Yet I conceived after a laparoscopy! My children make the dream of my life real and worthy.
Four years after joining
this Doc Don, the non??union was finally diagnosed and confirmed by a leader
in the field of orthopedics medicine. Both doctors were a new breed
of doctors which was patient care first. Before Doc Don I was never
accorded normal human courtesy or kindness from my docs. So, I had to
assimilate myself
to these great docs and learn to accept their care and graciousness with
graciousness of my own. It was very difficult. When I banned
docs from my life I did so out of distrust and fear so powerful that these
emotions left me petrified and dry mouthed (panicky) in their presence.
According to my good doc I had been emotionally traumatized by these callous
and self-serving men. You see the old group of doc deleted my from
their practice after three years had passed and any chance I had of doing
anything about their negligence was moot. As the statute of limitations
were up in that time period, that is why I boycotted them! The emotional
distress these visits caused me was not acceptable.
After the birth of my son and being forced through a trial labor, when I was scheduled for a repeat C?Section, the whole left side of my body went numb and my right arm. The non?union showed very physically the stress it was under and let me know it was there. In fact, I had this non?union from 1980 ? 1992. Lot's of nerve damage and pain. Physical and emotional. My life seemed to be a minefield, if I did what was right for me others were unhappy. I did finally realize that I must take care of myself because no one else will. I perceived their attitude one of selfishness. They were concerned for me only what I could no longer do for them!
In 1992 I had a hysterectomy due to the fact that the doctor hurried through it as he did not want to do it in the first place! Lack of money from HMO's hurt doc's business's. I hemorrhaged on and off for two years. Then later that year I had a posterior fusion, where they go through the back of neck and the spinal cord to repair the damage. I was labeled a salvage job! The surgery was successful but it could not undo or repair the nerve damage. Of course, the doc told me all would be as it was before the ruptured disc, but there is only so much that the docs could do in repairing nerves. This doc had trouble recognizing this fact! This was very near all the major breakthroughs in spinal injuries! I always said I was born in the wrong time!
I carried and suffered on until 1995. My doc don had left with his own pain which disabled him. I still miss this man, this great doctor, he taught me much about the beauty and irrepressible wonder of the human spirit. I could not have come to this point without his wise guidance. It is a shame he could not follow his own advice. He gave all to his patients and saved none of this generosity of spirit and human kindness' for himself and his family.. His disability finally forced him to do so.
In 1994 I was in a car accident. A man struck my daughter and myself while driving to a birthday party for one of my daughter's friends. Even though there was not much damage to my car the vehicle that struck us hit the front right bumper, bounced off and hit again and caught the chrome runner on the side of our car and slid down to the passenger door. It, the striking vehicle, pushed our car sideways and I sustained further physical injuries.
In 1995, I had surgery
for thoracic outlet syndrome which was successful. My neck and lower
back could not be repaired at this point in time. It would consist
of metal rods; metal plates and screws. My neurosurgeon was
good and decent enough to be honest and tell me that I would be further
limited by this procedure. He stated in good conscience he could
not perform this surgery for/on me until I had raised my children.
I agreed totally as my children are my first priority. I adore my
present group of physicians; they are true healers. They are healers
of the spirit if not of the body in my case as too much damage was done.
My pain management doctor played the largest part in my healing, emotional
and spiritual
healing. This
wonderful man told me even if all my damage could not be repaired he would
help me learn to live with it well. Not just existing nor surviving!
These doctors are a wonder!
My husband left me
years ago after I became disabled as "I did not fit his needs any longer".
Somehow because of my diminished physical performance I became less of
a person to him. Even though I still brought in more money than him
with my disability and I have always carried the family heath and dental
benefits. I suspect it was because he never came into his own and
could not bear the responsibility nor did he have the emotional capacity
to watch someone he loved in pain. My soon to ex-husband told me
once it was my strength that he resented in me. My strength of belief
in myself and in my convictions. I have and continue to try to live
my life to my personal best and always strive to better myself. Just
because all of me doesn't work perfectly and the bloom is off my
youth doesn't mean that I am useless and unworthy of life. People
constantly remind me that it is the survival of the fittest credo that
dominates our world. This may be so but I have carved out my own
little niche and populated it with all the things that I hold dear and
precious. I have found a bit of heaven in that I have found much
peace and joy in this life. Life brings it's own trouble but I refuse
to bow under them. I think of the willow tree that will not snap
with the strong winds but will bend and adapt to preserve itself.
I used to be an oak
unbending but my disabilities
have taught me more of the virtues I hold dear: love, kindness, forbearance,
tolerance and the need to help others. If I can one person find the
help they need so they need not go through my traumatic experiences, I
count myself lucky. My children are much more sensitive and to others
and do not treat youth like a stomping ground. They think things
through, well, most of time!
My triumph is that I decided to make life a friend , a partner and ally. Not as enemy waiting to pounce on unsuspecting prey. I would not permit myself to become bitter and embroiled in recriminations, blame and guilt. I wanted to raise my children in a safe, warm and harmonious environment. I have accomplished this and I count myself lucky. My children are still young but with the help of doc team I know I will prevail and continue to live life as best I may. One experience in my life left me with an unexpected source of strength and hope. After my embolisms I had what they call a near death experience. It was one of the most wondrous experiences of my life. When things get too bad or painful I think back and try to remember how I felt during that experience of leaving my body and traveling on light, the light of God or the maker of our world. With close to ten ruptured discs and extensive moderate to severe nerve damage in my arms and legs, some pulmonary diseases and eye damage from migraines, I now gladly accept help from others and make my attitude an ally and tool so that I may cope in a diligent, sane and intelligent fashion. I do this so that I may embrace all the joys and wonders of life and cope with the more sorrowful events of life.
Constant pain does injury to the body. It is a disease unto itself. It is called Chronic Pain Syndrome. It puts your body in a fight or flee mode, so all your adrenaline is pumping all the time. The adrenaline can burn out your major organs and tissue more quickly as your body thinks that it is helping by protecting itself. In the instance of chronic pain, stress, panic, grief; anything that puts more stress on our bodies such as illness, colds, viruses and bacterial infections, critical people and rude people due us harm.
I try to stay peaceful and harmonious and not let the laundry or a house not in perfect order bother me. I concentrate on life and living and my children. Others find this, my attitude very strange and eccentric, I find them amusing or disturbing depending upon how extreme the measures are that they take to convince me of my folly.
Most of these people who make these rude and unacceptable comments are scared that by being around people life me that somehow they will become tainted or drawn into my pain. The majority of people are repulsed by illness and disabilities. In addition, they feel helpless because they cannot do anything to help the person except being supportive and that gets wearying for most people. Spouses get angry, resentful; a few that I have encountered have stood by their spouse and did it in a wonderful way, so that the ill spouse felt cherished and loved.
I try for the most part to let these people and their attitudes roll off my back, like water on a duck, but sometimes these harmful aspects of human nature are very wrenching. i.e. people's attitude and need to convince us that if only we tried a little more, that our state of body damage is judgment from God for our sins or Karma from our last life. Retribution and judgment are two of the most resounding themes. If you were not at that place and at that time; or you didn't really need to go at that time, you should have known better. As if we purposefully put ourselves in danger and played the largest thus bearing the responsibility for being in an accident or being hurt in some other manner.
I never resumed my dancing career, the nerve damage was too much. I was told I would be in a wheelchair by the time I was 36, I am now 40 something. The human spirit is a wondrous thing. I have not made a history nor overcome odds so that I could resume college or return to the dance classroom. Instead, I am just one of many who have made a conscious decision to make our life as wonderful and joyous as possible by doing the things we are physically able to do. My injuries were too old for miraculous surgery. Thus I believe that when one door, or many doors close in your life, a window, or door(s) open in return. One must be attentive to opportunities like this so that you may use them wisely and to their fullest potential. I do not believe we only get one chance for the brass ring; we get many we just need to recognize them and act upon them. Many people reject there opportunities as they are "imperfect" or not exactly what they wanted. Flexibility and inner peace are the major keys in life; not just for disabled people but for all people..all our lives have disappointments and dreams that have been destroyed by one means or another hurt very deeply and cruelly. So, these people, I limit very much entrance into my life. Let them walk in my shoes for a day or two. I know that they are afraid of my physical damage. On a parting note, I finished this tonight. Princess Diana died last night and it affected me deeply. In an interview she stated that she believed that lack of love was the major disease in the world. I agree with her totally.
With sincerest regards,
Samantha
mailto:sionell@home.com
(c) August/97
