Jean and I have been married almost 36 years and we have two wonderful children who developed into fabulous, caring and mature young women. I was diagnosed with multiple sclerosis nine years into my marriage, and over the course of our life together, have often considered the effect that my diagnosis had on Jean, and also how she sees herself fitting into my ‘life equation.’ So, it was time to ask her.
Declan: We’ve been married since 1979. You were wife and mother for nine years until life threw us a curve ball. At that time, did you see a long, dark road ahead? Did life unfold as you imagined it would?
Jean: I thought that the diagnosis was the worst possible thing that could have happened to us. And yes, all I saw was a long, dark road stretching out into the future — a future that was now so uncertain. We couldn’t make long-term plans with any degree of certainty. Were you (Declan) going to be a ‘lucky’ one with the slowest of progressions? Or really unlucky and have a rapid progression? Were our two beautiful, young girls going to grow up with a dad in a wheelchair? Or worse — no dad at all? Your MS was quite slow in progression, so our worst fears didn’t materialise and we’ve been able to live a wonderful, active life together.
Declan: You have worked your entire adult life. While holding down a full-time, very demanding job, you still came home every evening and continued doing all the necessary housework. Where did you find the strength to continue?
Jean: I honestly have no idea, but the work had to be done. I got the strength from somewhere and did what needed doing…but it was tough going sometimes. We muddled through between us.
Declan: Is there a best part and a worst part to being my ‘carer’ insofar as you have been my carer for the past 26 years?
Jean: When you got septicaemia (blood poisoning) twice, those were the lowest points of our MS journey together. I actually thought I might lose you on both occasions. There were two highest points:when you walked each of our two daughters down the aisle on their wedding days.
Declan: Did you ever feel that you wanted to escape from the responsibility? Did you ever feel you wanted to chuck it and hang up your carer’s uniform?
Jean: There were times that I would have loved a week without MS. That is to say a week that I didn’t have to worry about MS and you didn’t have MS. Our marriage vows said ‘in sickness and in health until death do us part.’ Walking away was never, and will never, be an option.
Declan: Do you feel that it is your responsibility to care for me?
Jean: Yes. But because the progression has been so slow, it has never been an issue for me.
Declan: Do you have a support network in place for you when the job weighs you down?
Jean: Yes. Since our daughters have grown up, they act as my rock and first line of support, which is also augmented by your sisters and brothers.