Before John Burke* got married in September 1992, a number of people asked him if his wedding was still going ahead and if he realised what he might be "taking on"?
John, and his then fiancee, Mary*, who live in the city, were in their thirties and were looking forward to spending their lives together. They had a wide circle of friends, an active social life, and successful careers. They were blissfully happy and did not envisage any black clouds on the horizon.
Mary, a former second-level teacher, had been diagnosed with multiple sclerosis earlier that year but even that did not cast a shadow on their happiness. However, others in their life were worried about her diagnosis and voiced their concerns.
"We were in our early thirties and invincible," said John. "We were no different to any other couple, full of dreams and imaginings as to what the future would hold. Everything was positive and exciting. We were oblivious to anything that was not positive affecting us and, sure what if it did, we were invincible and committed to each other and to the idea of any unknowns that might visit us.
"MS was something that was in the knowledge bank, but on the face of it, was something that was having no effect and as Mary's mother used to tell her friends: 'Mary had a 'touch of MS'. I remember laughing at the thought of 'a touch of MS', it was even then like describing a woman as being a 'little bit pregnant'!"
It is 32 years since those halcyon days. In the intervening years, the Burkes had two sons, now aged 29 years and 25 years, who have brought them great joy. The couple's love for each other has been unfaltering down through the years. Sadly, one of the other constants in their lives has been multiple sclerosis and the insidious nature of what he describes as this often, cruel disease.
"I guess hindsight has been our greatest teacher. Amazing, how looking back on the past can make sense of the present. I know every family has individual experiences, but for us, MS was definitely the gift that kept on taking."
John grew up in Dublin and met Salthill woman, Mary, while he was working in Galway. He later began working with people with progressive illnesses. This was a blessing in many ways, he said, because it taught him a lot about MS, a progressive degenerative condition of the central nervous system.
Collective experiences
"It helped our sons realise that Mary's fatigue and cognitive difficulties are not a life choice and are as a result of our unwelcome guest, [MS], and not how she feels about them. This has been a difficult path for them I think, in that we live in a world where perfection is valued over reality - the perfect family, the perfect Christmas, the perfect mother .... Oftentimes, we lose sight of the 'good enough', for we are all imperfect and mostly endeavour to do the best we can with the skills and collective experiences that formed us."
His wife's MS journey began early in 1992 before she and John got married. Her symptoms began with numbness in her big toe which was not improving. She was working in Sligo then and attended the local hospital for tests. These ruled out several conditions but a question mark still hung over her symptoms. She was referred to Dublin for an MRI scan.
"She was called back for a follow up appointment where the consultant met her and unceremoniously said to her: 'Well, it looks like you have the real thing....multiple sclerosis and there is not much we can do'. Remember, this was 1992 when there was nothing like the level of knowledge and treatments for MS as there is now. Not knowing at the time what MS was, Mary was subsequently referred to a neurologist (the deliverer of the diagnosis was not a neurologist ). That was all in May 1992 and the wedding was planned for September of that year. I think that what we did was parked this information in the back of our heads as there was nothing to think about in the now, just possibilities and statistical probabilities.
"I would never have regarded Mary as 'sick or suffering from some illness'. I have always tried to approach life from the perspective of language creates reality and sick, suffering, and illness was not part of our reality or maybe we chose it not to be."
However, as the years progressed, the Mary he knew was gradually but inexorably disappearing, he says. "With us, MS has been an unwelcome guest in our lives that has never gone away. Like all unwelcome guests, its presence has felt, at times, intense, impossible, and at other times, insidiously smouldering away, but always there.
"Life is sometimes too busy [for us] to recognise that the bits and pieces of life are changing constantly and to 'survive’ progressive illness and loss you have to adapt. In reality, the goalposts are changing and you need to adapt. In our case, Mary is redefining herself as insidious changes manifest themselves but the rest of the family is also redefining ourselves in relation to her. So much of this is instinctive but some of it is about making definite decisions.
"Adapting the bathroom, ramping the front of the house, getting a scooter, knowing where is accessible before you set off, purchasing continence pads, all of this curbing spontaneity.......In the early days, there were the delights of two beautiful sons and all that that journey brings - their dreams, becoming the best versions of themselves, and blossoming into creative young men formed by the collection of experiences of our family unit as all children are formed by their collective experiences."
John believes there are themes within experiences such as loneliness, aloneness, lack of intimacy, and the need to reframe one's dreams, which link us to others who are coping with life's challenges. "I know that our family experience is not uncommon. But I think what connects us to many is the lonely road that can be the result, especially for Mary."
The stolen child
In her heyday, this once vibrant woman was "the centre of things", according to John. An accomplished English teacher with a love for Gerard Manley Hopkins and WB Yeats (she would recite the Sligo man's earlier poem, The Stolen Child " and Hopkins' The Windhover at the drop of a hat". )
"Ironically she is now the 'stolen child', stolen from us as a family but also stolen from many of her friends who no longer know how to be with here or relate to her and she is now a member of what I call the 'forgotten people'. There are so many forgotten in our midst and maybe it is time to welcome them back from the shadows. I think we need to learn how to 'be' with people, our families, our friends.
"I remember chatting to one of the carers that come into Mary who was telling me that she found it very difficult to be with her because she, (the carer ), was a doer. Her idea of success was caught up in what she accomplished and because Mary was not 'doing', she, (the carer ), believed she was failing in some way. But as I listened to her, I suggested that 'being present' to someone was equally, if not more, important than 'doing'. For when we are present to someone, we 'see' them...."
John stopped stopped working last December, not so much to become a full-time carer for his wife, but more an active supporter for her, he said.
"I have, for as long as I can remember, lived with the maxim that ‘language creates reality’ and, so for me, the language of 'supporter to' and 'carer of' mean such different things, even though to the outside world the tasks may appear the same. But, I am not ready to become a carer in the truest sense of the word. In truth, for all our life together, we have cared for each other and our children but to become the carer of one's wife who now requires assistance for nearly all daily activities, throws such a different light on everything.
"I worked in the area of progressive illness for 29 years and met many people on their journey and also their family members. I was very conscious that the world is very much divided into the perspective of the inside looking out (the person with MS, in our case ) and the outside looking in (family members, friends, medical teams ).
"I met many who had a similar journey to the one that we were on and was also very conscious that working in the area of progressive illness was a real privilege in that it gave me an understanding of the nature of conditions like MS and how they played out, especially in regard to the invisible symptoms like fatigue and cognitive decline."
Circle of support
Fatigue, which can be an issue for people with MS, as well as their partners and children, can be much misunderstood, he said. Sometimes, it is wrongfully interpreted as not being bothered.
"This can lead to much unintentional distancing, resulting in a very narrowing of that circle of support. Cognitive decline, in our case, was the most profound change, where at this point Mary is there but no longer there. The only way of describing this is present absence. The closest experience [to this] is the dementia space but it is also very different to that. In reality, it is what it is and drawing comparisons to other diseases can be helpful and also unhelpful as once you liken it to something else the expectations of how it may play out into the future may also change so we have become a day-to-day family!"
What does he miss most? "My companion", is his answer. "It is so strange to miss somebody who has physically not gone, who looks the same, sounds the same. There are vignettes of clarity which in the moment are remembrances of presence but they are fleeting and the impact of these fleeting glimpses can be both beautiful and frustrating at the same time.
"I miss 'imagining' with my companion in life and sentences that start with 'let’s....' the other aspect I miss so much is intimacy. The intimacy I speak of is not necessarily physical but it is that touch, that glance, that sense of connection, being seen, warts and all, and that feeling of being loved and connected."
Sometimes John feels jealous when he hears couples chatting in restaurants, or at parties, or discussing their holidays or future plans. He experiences waves of "tremendous loneliness" because of this loss of intimacy and adult companionship.
"There is no-one to talk to about issues past, present, or future. This may sound odd but I always thought that the worst thing that could happen would be to lose a loved one to death. I now realise that as painful as that must be, there is an end, and, to some degree, life can go on. For me, watching Mary deteriorate slowly over several years seems so much worse. Death seems to be occurring in an incremental way."
* Anyone interested in speaking to John* can telephone him at (087 ) 2500726.
* The names of the people in this article have been changed to protect their identities.
