Dear everyone,
We have not looked at this website since last December and you can be assured that returning to it today has been very hard. Indeed, the last entry recorded there was intended to be final and the intention was to eventually close down the website completely. Well, as you can see, that never happened. Somehow, we just couldn’t bring ourselves to do it. To us it felt like a betrayal to Steven and his memory to remove this blog and its testimonial from the ether.
This had been fairly indicative of how things have been this past year. Although Steven is gone forever, he continues to written into everything and every aspect of our lives. Literally everything reminds us of him and the things he said and did throughout his life. Steven continues to be all around us. Of course, we can only use our imaginations to guess his reactions to all that has happened to us and in life since his departure. Such is the measure of all that we and he lost – all of his life and living that we all should have shared with him – how much we all had to look forward to and how wonderful that experience would have been. So, as painful as some memories and such thoughts may be, they are inevitable and cannot be avoided, nor would we want to avoid them because, like erasing the blog, that would be the biggest betrayal of all.
Throughout the past year, so many of you have commented upon how well we have handled everything we have been through. I guess there may be some small truth in this perception; however, it has to be said that our appearing generally ‘upbeat’ has been more about self-preservation than anything else and seems to be the only way we can contain our huge loss. I know that people mean well when they want to talk about and share grief and sadness, and that some bereaved individuals may find relief in this: for others it just increases the misery. I think we fall into the latter category. We have no problem in talking of Steven and his life but it is impossible to dwell on last year and those awful autumn months. Certainly to talk about this part of his life’s experience is still impossible.
How best to commemorate Steven has occupied a lot of our reflections this year. We have tried hard to think of what he would choose if the choice were his. I remember on one occasion when he was ‘really ill’ in St. Louis, he mentioned that for his MSc dissertation he had already decided that he was going to study the inequity of the availability of drugs and medical services and the unrelenting cost of drugs charged to health services by pharmaceutical companies. Always a fighter and one for justice and fairness was Steven!
Thinking along these lines, we have decided to set up an association such as an ASBL (abbreviation for Association Sans But Lucratif - in English this means a non-profit making association) in Steven’s name. There are so many people (many of them very young) who have to experience stem cell or bone marrow transplants and endure all of the suffering that this entails. I felt so often, while secreted away in that bone marrow transplant unit in St. Louis, that there is such a feeling of isolation and of being deprived of all of the normal things in life – even when the patient is experiencing a period of feeling quite well and capable. It really is an environment of isolation, sanitization and deprivation – that’s the reality despite the best efforts and highest standards of medical care. Anything that can be done to improve the lot and the chances of survival of young people in this situation has got to be a worthy cause.
We have yet to finalise the details of how this organisation will operate and what specific charities it might support. We had hoped to have this in place by the first anniversary of Steven’s death, but logistically that has just not been possible. As soon as things are properly formalised, we will inform all who are interested via e mail and update this website accordingly. There may even be a brand new website in the offing.
When Steven passed away, it felt like a part of our life had been irretrievably extinguished and nothing will ever compensate for this. However, with hope in our hearts and Steven always on our minds, we hope that this initiative will commemorate Steven and keep his memory strong and alive for all those who knew and loved him.
With love to all our family and friends,
Evelyn, Matthew and Feargal
Thursday, 27 November 2008
Wednesday, 12 December 2007
FAREWELL AND THANK YOU
Dear everyone,
Matthew, Feargal and I would like to take this opportunity to express our gratitude to you all.
Many thanks to all family and friends who attended Steven’s funeral, particularly Steven’s friends who traveled from far and wide to be there. Despite the sadness of the occasion, it was comforting to see you all and spend some time with you.
Thanks for the huge number of mass cards, e mails and letters of condolence we have received. We have been overwhelmed!
Lastly, many, many thanks to all of you who followed Steven’s progress on a daily basis through this blog website. We know that you have been numerous and steadfast in your support and goodwill, and Steven was well aware of this throughout his struggle in Paris.
As this is the final message, we thought it appropriate that the eulogy from Steven’s memorial mass be included as a last farewell. (Please see below)
This website is now closed for comments and will be shut down completely before Christmas.
Love to all,
Evelyn, Matthew and Feargal
Eulogy
When Steven was born in 1983, like all first-borns, he made a dramatic difference to our lives. As parents, we were novices and about to embark on a very steep learning curve – pretty quickly, Steven made us keenly aware of his every little need and had us immediately jumping to attention.
Naturally, Steven's needs waxed and waned throughout childhood and adolescence but at no point did we ever foresee how complex, specific and challenging his needs would become into adulthood; and just how much more we had to learn from him.
This was never more apparent than when, in 2005, he was diagnosed with Fanconi anaemia, which carried the very bleak prospect of being a terminal illness. Steven, always the pragmatist, perceived his prognosis as an inconvenience to be gotten over. Instead of feeling down and perhaps embittered by the very sudden and totally unexpected identification of this awful disease, he powered on and refused to be limited or defined by his medical condition. Defiant, he resolved to continue his life and embark on all his existing plans despite the looming medical crisis that was overtaking him. Fully cognizant of the medical dangers he faced, Steven, while always open to discussing and making plans regarding his condition, would never dwell on it to the exclusion of other 'more enjoyable' events.
And boy did Steven have a penchant for enjoying life! He liked nothing better than weekends out with his mates, going on the razzle, followed by long lazy Sundays recuperating. For Steven, relaxation was an art, which once perfected had no parallel. He could spend oceans of time just pottering around his room, listening to his vast array of music, smoking and chatting with friends. Taking most things in his stride, he never exhausted himself, and aspired to being totally laid back – emotional drama was something he did not enjoy.
However, the laid back Steven was not the essential Steven. Steven was always a high achiever, fairly competitive and would not embrace failure easily. Strong in his opinions, it was impossible to sway his stubborn streak when he got dug into an idea or a stance. He was very much an independent thinker, with an ability to be absolutely direct when necessary. Injustice, blatant materialism, and pomposity all crazed him. Conversely, he valued ordinary people with ordinary lives and had a very kind and generous nature. After living in Bangkok for a short period, where he had witnessed at first hand real human inequality, on his return to Europe, he immediately embarked on an MSc in Development Studies to address what he perceived to be overwhelming global unfairness.
Steven always had an informed, refreshing and usually witty view on almost every topic. He was a mine of information on all things sporty and a true football fanatic. A real highlight of his time in Manchester was being able to go see his team Liverpool in action.
In all, this combination of Steven’s total love of life and his strong inner qualities provided him with the drive, steadfastness and clear focus to face up to the most intense and destructive of medical procedures during his stem cell transplant. Steven approached the date of his hospitalisation with a strong belief in his own powers of survival – for him defeat was not an option and this faith kept him going through the many very dark days when suffering was intense.
Heartbreakingly, Steven did not win his struggle. That Fanconi anaemia is a formidable opponent was clear from the start. Ultimately, all of our intense preparation, dedication, love and support, combined with Steven’s strong resolve and fighting spirit, could not prevent this disease from gaining the upper hand. A lifetime without Steven, we cannot even begin to imagine. Our only recourse is to be inspired by Steven’s love of life and tenacity within life. We will take Steven as our role model to heal, to hopefully embrace and enjoy life once again, as he had always intended to do. We will always love Steven and he will dwell in our hearts, thoughts and in the core of our family forever.
Matthew, Feargal and I would like to take this opportunity to express our gratitude to you all.
Many thanks to all family and friends who attended Steven’s funeral, particularly Steven’s friends who traveled from far and wide to be there. Despite the sadness of the occasion, it was comforting to see you all and spend some time with you.
Thanks for the huge number of mass cards, e mails and letters of condolence we have received. We have been overwhelmed!
Lastly, many, many thanks to all of you who followed Steven’s progress on a daily basis through this blog website. We know that you have been numerous and steadfast in your support and goodwill, and Steven was well aware of this throughout his struggle in Paris.
As this is the final message, we thought it appropriate that the eulogy from Steven’s memorial mass be included as a last farewell. (Please see below)
This website is now closed for comments and will be shut down completely before Christmas.
Love to all,
Evelyn, Matthew and Feargal
Eulogy
When Steven was born in 1983, like all first-borns, he made a dramatic difference to our lives. As parents, we were novices and about to embark on a very steep learning curve – pretty quickly, Steven made us keenly aware of his every little need and had us immediately jumping to attention.
Naturally, Steven's needs waxed and waned throughout childhood and adolescence but at no point did we ever foresee how complex, specific and challenging his needs would become into adulthood; and just how much more we had to learn from him.
This was never more apparent than when, in 2005, he was diagnosed with Fanconi anaemia, which carried the very bleak prospect of being a terminal illness. Steven, always the pragmatist, perceived his prognosis as an inconvenience to be gotten over. Instead of feeling down and perhaps embittered by the very sudden and totally unexpected identification of this awful disease, he powered on and refused to be limited or defined by his medical condition. Defiant, he resolved to continue his life and embark on all his existing plans despite the looming medical crisis that was overtaking him. Fully cognizant of the medical dangers he faced, Steven, while always open to discussing and making plans regarding his condition, would never dwell on it to the exclusion of other 'more enjoyable' events.
And boy did Steven have a penchant for enjoying life! He liked nothing better than weekends out with his mates, going on the razzle, followed by long lazy Sundays recuperating. For Steven, relaxation was an art, which once perfected had no parallel. He could spend oceans of time just pottering around his room, listening to his vast array of music, smoking and chatting with friends. Taking most things in his stride, he never exhausted himself, and aspired to being totally laid back – emotional drama was something he did not enjoy.
However, the laid back Steven was not the essential Steven. Steven was always a high achiever, fairly competitive and would not embrace failure easily. Strong in his opinions, it was impossible to sway his stubborn streak when he got dug into an idea or a stance. He was very much an independent thinker, with an ability to be absolutely direct when necessary. Injustice, blatant materialism, and pomposity all crazed him. Conversely, he valued ordinary people with ordinary lives and had a very kind and generous nature. After living in Bangkok for a short period, where he had witnessed at first hand real human inequality, on his return to Europe, he immediately embarked on an MSc in Development Studies to address what he perceived to be overwhelming global unfairness.
Steven always had an informed, refreshing and usually witty view on almost every topic. He was a mine of information on all things sporty and a true football fanatic. A real highlight of his time in Manchester was being able to go see his team Liverpool in action.
In all, this combination of Steven’s total love of life and his strong inner qualities provided him with the drive, steadfastness and clear focus to face up to the most intense and destructive of medical procedures during his stem cell transplant. Steven approached the date of his hospitalisation with a strong belief in his own powers of survival – for him defeat was not an option and this faith kept him going through the many very dark days when suffering was intense.
Heartbreakingly, Steven did not win his struggle. That Fanconi anaemia is a formidable opponent was clear from the start. Ultimately, all of our intense preparation, dedication, love and support, combined with Steven’s strong resolve and fighting spirit, could not prevent this disease from gaining the upper hand. A lifetime without Steven, we cannot even begin to imagine. Our only recourse is to be inspired by Steven’s love of life and tenacity within life. We will take Steven as our role model to heal, to hopefully embrace and enjoy life once again, as he had always intended to do. We will always love Steven and he will dwell in our hearts, thoughts and in the core of our family forever.
Monday, 3 December 2007
FINAL ARRANGEMENTS FOR STEVEN
Dear everyone,
There will be a memorial mass for Steven, followed by cremation, at 2:00pm on Saturday 8th December. This service will take place in Dublin at this address:
Mount Jerome Crematorium
Mount Jerome
Harold’s Cross
Dublin 06
Ireland
Everybody is very welcome to attend this ceremony. We ask that instead of flowers, donations (if desired) should go to the Fanconi Anemia Research Fund in the United States. Donations may be made online, by mail or telephone
Website: www.fanconi.org
Fanconi Anemia Research Fund, Inc. 1801 Willamette Street, Ste. 200 Eugene, OR 97401 Tel: 541-687-4658
Evelyn, Matthew and Feargal
There will be a memorial mass for Steven, followed by cremation, at 2:00pm on Saturday 8th December. This service will take place in Dublin at this address:
Mount Jerome Crematorium
Mount Jerome
Harold’s Cross
Dublin 06
Ireland
Everybody is very welcome to attend this ceremony. We ask that instead of flowers, donations (if desired) should go to the Fanconi Anemia Research Fund in the United States. Donations may be made online, by mail or telephone
Website: www.fanconi.org
Fanconi Anemia Research Fund, Inc. 1801 Willamette Street, Ste. 200 Eugene, OR 97401 Tel: 541-687-4658
Evelyn, Matthew and Feargal
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