MY STORY

My name is Grzegorz. I am 34 years old and since my birth I have been suffering from Duchenne muscular dystrophy (DMD) syndrome. I live in Poland, at the suburbs of Wolomin. Through my window I can see meadows and I can admire the nature and its beauty. I‘ve got wonderful Parents, sister - Magda, brother in law (her husband), a niece- Agnieszka and two nephews: Wojtek and Michal.

Since my 10^th birthday I’ve been sitting on the wheelchair and slightly I’ve been losing capacity to do anything (now I can do next to nothing). Since June 2001 I’ve been the patient of the hospice, the reason of admission was huge oxygen deficiency, which appeared because of the weak respiratory muscles. There was no hope for me. At that moment I started to ask myself if the end of my life was coming. Why now, in such inappropriate moment? I don’t want! Those thoughts started to haunt me even though I knew how seriously ill I was and that my life was coming closer to the eternal life.

When I graduated from the high school I decided not to continue the education, but to seize the life. Although 6 years had passed (1994-2000) I had been surprised that it had lasted for so short. I had found out something for every man: “one should be ready for death always, because you never know the day or the hour; you should reconcile God and people, because you can have no time for it later or lose your head. I had lost consciousness because of oxygen deficiency, so my rational thinking was limited.

Now I explain why I‘ve been a hospice patient for so long and why I’ve been living for so long and why I am able to write on the computer. Well, I have wonderful Parents, thanks to them I’ve been living for so long (it means as for this disease).  They don’t make me feel that I am so ill. Thanks to them I could seize each day, I spent summer holidays on the rehabilitation holidays; I visited a lot of different places, sanctuaries of Virgin Mary, etc. When the disease intensified, my Parents couldn’t agree with my dying. Especially my Dad – he looked for help in Warsaw Hospice for Children. He thought that they used the respirator or other equipment.

When from internet and other media I learned how respirator worked and how life of the people on respirator looked like I started to look for other solutions. Respirator is good for the ill who has short term problem with the breathing and after a while he/she is coming back on his/her “normal breathing”. The ill person who doesn’t have any chance to breathe normally, respirator can make his/her life difficult and prolong agony/dying. The ill on respirator can’t say anything to his/her carers. The patient suffers very often on the infections of his/her respiratory system and at the end he/ she dies. Being aware of the arguments for and against respirator for the patients with muscular dystrophies I decided: “I don’t want respirator”. The physicians from the hospice suggested concentrator of oxygen. Unfortunately the attempt at breathing the oxygen from concentrator was unsuccessful. My body reacted with breathing difficulties, so I felt worst. The most difficult for me and my parents was to survive a night: I was losing the breath every 5 minutes; my Parents – on shifts- helped me by pushing my chest. But during the day I was sleeping and losing my breath, even during eating. Because of the sleepless nights I was sleepy and tired (so were my Parents), it made my state worse. Breathing problems were accompanying by the infections of the lungs.

In June 2001 I got the Sacrament for The Ill with the weak faith of improving of my state and in September I felt better.

I am really glad that I am the patient of WHC from which I got different kind of help, care, I’ve ever expected even in my dreams. First of all I have easy, 24 hours per day contact with the doctor. Previously I had problem with it because of the architectural barriers. Now when I feel bad, poor my Parents call the hospice and soon the help – what a help - is coming to my place. Such competent, understanding and nice doctors I’ve never met before. In WHC each patient has his/her own nurse. My nurse is Kasia, who cares of me like nobody else. The spiritual, psychological and material help of the hospice is irreplaceable. Spiritual help is doing by the father Benedykt Mika, with who I like to talk about the most important problems of nowadays world, and these which are important just for me and my family. Thanks to priest I don’t have any problems with confession, because I don’t need to leave the house to do it. Psychological help is providing by Agnieszka Chmiel – Baranowska, with who, too, you can talk about everything or even go for a walk.

I am satisfied with the hospice care.  Thanks to it my life became more interesting, I met a lot of new people,  I was in 5 television programmes and on radio, the foreigners visited me, and I even met via internet one person who saw me on TV. I can’t imagine my life without hospice, every day phone calls, question how I am doing. But I have to confess that my beginning in the hospice was quite difficult. Firstly, even the single though that I was so ill that I could die was unbearable. I remember how I said to my Father to wait with “the admission” to the hospice, that the problems were temporary and that I would be soon in good – normal condition. Secondly I was surprise by the kindness -not seen in other institution – of the hospice personnel. Everybody from the hospice wanted to meet me and get more information about my problems to better help me, and I was thinking what for they wanted to be in touch with such “almost dead” person.

Generally speaking I think my life is successful.