My name is Debby, Debs or Deb, whichever you feel most comfortable with. My friends call me Debs, which sounds right in the United Kingdom, but a little strange over here in the United States, I know. I have lived in Greenwich, Connecticut for nearly three years now, which I have enjoyed a lot. The only negative thing about it is that I was distanced from my mum during what turned out to be her last years.
She was diagnosed with fibrosing alveolitis in England around four years ago, just before I moved to the United States with my husband. His career is important to him and it was a new opportunity for all of us to experience living in a different part of the world. Mum found it hard to see us go, but it was always her wish, throughout our lives, that we live our own lives to the fullest.
We talked regularly on the phone, once even discussing the fact that she would not make 'old bones' with this disease. It still did not feel as if she would die soon, and it did not occur to me then that I would be living here when she died.
On a Thursday afternoon I received a call from my twin brother to tell me that she had had a respiratory arrest. My husband had me on a plane that same afternoon and I was by her side by the next morning. She had had three aneurysms, one on her heart, one on her lungs and one on her brain, so she was not her normal self. I am glad to say that she did know I was with her, and she was even able to tell me that she loved me on the second day. In fact, that turned out to be the day she died, May 30, 2004, and they were the last words that she said to me.
She was someone who blessed my life immeasurably, with a beautiful heart and soul. I was so fortunate to get to her on time and to be holding her hand as she departed this world. My dad, my twin brother and her very best friend and myself, were all with her.
I miss her terribly, but am thankful that she did not have to live in a helpless state, which was her greatest dread. When I reflect on the short time that she lived after the diagnosis, just two years, I remember the life expectancy that the web sites I visited suggested and wish that I had returned home to be with her more. I could have given her a manicure, rented a convertible Mercedes for the day and taken her out for tea or champagne or both. That would be my advice for people with loved ones diagnosed with terminal illnesses, to do special things together, and make the most of every moment you have together. My mum would not have wished for me to treat her like a dying person, but I could have shown her a bit more fun, in amongst the major lifestyle adjustments she had had to make, such as only being able to go out in a wheelchair, and needing to have a stair lift installed at home, along with other things to assist her.
One frustration I feel at times, is that it took so long to diagnose the disease. The earlier the diagnosis, the more effective the limited treatments are apparently. It is difficult for doctors to diagnose new incurable diseases, but she had an unusual cough for over a year before a second doctor that she visited finally took it seriously.
What can I do now? Grieve, reflect, allow myself to 'be', not get angry, devote myself to my husband and my children, help my dad, be there for mum's best friend (who never had her own children), visit other people with terminal illnesses, help others and not wallow (only sometimes), research the disease to understand the risks for myself and my brother…and for me it helps me to pray.
Email: [email protected]
Story submitted 09-01-04
Story posted 09-15-04 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.