My life with Hemi english
My Life with Hemipelvectomy
2012 Symposium in Baumrain Clinic in Bad Berleburg
German translation: Mein Leben mit Hemi
My name is Monalisa Rosh. I was born in 1961 in Eisenach in the German Province of Thuringia.
When I was 13, a tumor the size of a fist was discovered under my left knee. After two operations and due to connections useful in DDR at that time I got transferred to the well known Robert-Roessle Clinic in Berlin Buch that was part of the cancer research center in the Academy of Science.
Here several further operations were conducted but the tumor that had grown on the tendon. though not building metastases, kept re-appearing. From the beginning the question of amputation was raised, but my parents and also doctors wanted to avoid that.
A board of 25 doctors in Roessle-Clinic decided on a less tested method - the radiation exposure to the fast neutrons in an experimental nuclear power station in Rossendorf near Dresden. One doctor expressed disagreement. As I think, he suspected that a benign tumor will be resistant to the radiation.
During the therapy weeks I and about ten of my fellow patients daily went from Dresden Carus Clinic to the well-guarded experimental facilities to Rossendorf. The hall where the radiation equipment was placed was not suitable for the needs of severely ill patients.
Also the psychic pressure that was caused by this highly doubtful treatment method was not catered for, though a team of radiologists that came along from Berlin Buch was trying to help.
On most evenings, as I returned to the six-bed patient room in Dresden Clinic, I had to face the suffering of other, quite old patients, despite of me being just 15 years of age.
The radiation could not eliminate my resistant tumor, only the muscle tissue was deeply burned. I could no longer use the leg. As the tumor appeared again, I started receiving a higher dosage of radiation. The leg was burned up to the buttock, stiff and the necroses the size of a palm went deep into the flesh and later fouled.
It was the worst stage of in the 6 years of my suffering.
Why am I telling you about it here in such detail?
Only this way one can understand that I saw the amputation (then again in Roessle Clinic in Berlin) as a relief.
One day before my 19th birthday it finally took place: the amputation of my left leg at the hip level gave me my second life!
After the years of agonizing pain and the enormous psychic pressure due to the uncertainty of my situation and the distance to my home, I was not crying about the loss of my leg, I literally mean this. In less than 3 weeks I was released from the hospital and took the train back to Eisenach, in the company of my completely exhausted mother.
The wounds healed very fast, and I wanted to start my new life as fast as possible.
In two months' time I went back to Berlin, where I received a prosthesis with a pelvic socket. After a short instruction I could go home, where I attended a gait school with a therapist who had no experience concerning pelvic socket prostheses, so the training brought very few results.
Though I could walk short distances on even surfaces at home without crutches, it was very painful. And to go out to the street, I needed the crutches all the time.
So my dream to become as fast as before with this prosthesis, and to be as if newly born, was destroyed.
I rather felt more disabled with the prosthesis than without it. I still tried it for several months and then gave up.
My desire to be able to move freely and without pain was too big. The walking on crutches was on the other hand much easier. Sometimes I even took two or three steps of a staircase at a time.
I found the balance and my new midpoint rather fast.
Half a year later I got a Trabant car with automatic gearshift – earlier than expected. Before that I had commuted by bus, started an office job and got my high school certificate through attending evening classes.
Shortly after that I received a new two-room apartment on the ground floor. My life went on in a new, but a secure way.
Even though I wasn't a champion of the DDR regime, I felt in well cared for and helped by the government in the early 1980's.
I even got a person who helped me about the house from the Volkssolidarität (civil solidarity) society.
A disability compensation and a nursing allowance added to my wage and granted me a sense of financial security.
Also emotionally I had been stable from the very beginning. I took the new daily tasks as a challenge.
When I was 22, I had to face a challenge of a special kind. When I spoke to my surgeon Dr. Schmidt-Peter before the hemipelvectomy was conducted about the consequences of this extremely complex operation, I expressed the concern about my ability to bear and deliver a child with only half of my pelvis. He said, there had been a woman before me who managed that. It was enough for me to hear, that meant I would manage it, too!
But think about this for a moment – we are speaking about DDR in the 1980s.
There was no opportunity to get information in the books, to say nothing of the Internet. Dr. Schmidt-Peter who encouraged me to have the operation done was the person whom I trusted to make the most important decision in my life. Some time ago I tried to find that doctor again to thank him, but unfortunately he had already passed away.
I became pregnant with my daughter Cecilia at the age of 22. Though I new that I would have to raise Cecilia without her Cuban father, I was afraid not to be able to fulfill this desire to have a child at a later point.
I was regularly warned by he visiting rehabilitation services that pregnancy would cause fast and severe wear and tear of the joints and muscles.
What I could not imagine then, is that I will get re-married and give birth to other four completely healthy children.
Of course the pregnancy caused some difficulties, since I could not do that much and had severe back pain, But I up to the time of delivery (which was always a natural delivery by the way) I went on crutches and tried to manage my job and my household as much as I could.
Often the kids were born in very short periods of time, so that I was sometimes still breastfeeding a child and was already pregnant with another one. Both of my girls Sarah and Laura and my boys Johannes and Thomas were born one after the other. My now ex-husband helped me a lot. The fact that we separated two years ago had by the way nothing to do with my disability.
In any case I feel that the motherhood has served to balance off my bad luck, so that despite of my medical condition I still could live a very full life. My last son was born when I was not particularly planning for it, at the age of 41.
Today I am very grateful for my kids, aged nine to twenty-eight!
Besides being a mother, I always placed an emphasis on developing myself professionally. After the fall of the Berlin Wall and 10 years of work as an office clerk at a publicly owned company, I became a freelancer at a concert agency in Eisenach.
After moving to Cologne I met my ex-husband there. We built up a bilingual magazine on the topics around the orient and published it 18 years long, until we separated.
Due to this interesting work, I could take exciting trips. I went to Turkey several times. But a very special experience was my trip with a belly dancer around Egypt, traveling by train, by bus, by taxi, or in an auto rickshaw.
I also went on business trips to Cuba twice, where I investigated Arabic influence in Latin America.
Six years ago I founded a dancing school for girls and women who are also interested in oriental dance. There I offer a dancing project for women with amputations. A famous belly dancer would like to teach a mermaid's dance to this group, where our only leg will serve as a mermaid tail.
Maybe we will even be able to present this dance on stage.
This brings me back to an important point. I had felt myself attractive and treasured as a woman with a disability – most of you may think now DESPITE of my disability.
There are a few males (but also females) that find people with amputations quite attractive, but I do not want to describe the topic of amelotatism here further, though it is very interesting and still a lot of education work must be conducted there.
I mean attraction on the whole, influenced thorough human values, humor, common sense, cultivation, self-reflection and being in peace with oneself.
If we, as women (but men as well) take ourselves as the doctor made us, no, as it turned out due to our destiny, we will be taken more positively by others as well.
For the past half year, I have been involved with the organization “beinamputiert-was-geht” (leg amputation – what is now possible), in addition to taking care of the family and doing a part time job.
This self-help group isworking on a number of topics that often are only tobe discussed in the circle people directly affected by the amputation.
Either through visiting patients still in hospital, informational events, or meetings among the members, the organization offers very personal help for self-help.
Considering doctors, I would like the special health aspects of persons with highamputations to become better known. I have always wanted an additional assistance by the rehabilitation physicians to be able to maintain my life quality for as long as possible.
I have described my life in such detail to show, what people with high levels of amputations are capable of, but we do need support for this. Your support, the support ofdoctors, but also prosthetic technicians, physiotherapists...
In the years following my amputation I kept looking for an orthopedist that could assist me with my orthopedic or prosthetic treatment, but also to help me to slow down the wear out of my joints with the right prevention and therapy methods.
Also the coaching how I can grow old still staying healthy with this type of disability would help as well. In the end, it would save the treatment costs!
Finally I received most help in this field from my physiotherapists in Westerwald, who, luckily, has a lot of experience and empathy – even in the direct sense of this word. Because she physically touches almost every one of her patients, thus feeling what needs to be done.
Thanks for your attention!