I was diagnosed with MS in 1988, when my two girls were very young, and that mists the memories. I learned so much when I interviewed my wife Jean some months ago and now I am learning more. What comes across in both interviews is that the three most important people in my life are strong; so much stronger than I ever gave them credit for. Following is an excerpt from my conversation with my daughters, Elaine and Mairéad.
Do you think we should have told you about my diagnosis sooner and explained it better?
Elaine: I don’t remember a lot about what was said but I do remember you sat us down to explain it, even if it was seven years after you found out. Would we have understood it at eight and six years of age? Probably not!
Do you think that we, as a family, missed out on a lot of growing up and family stuff as a result of the restrictions placed on me by MS?
Elaine: As I was 15 before I found out, I would say no, we had lots of holidays, day trips and all sorts of family outings before and after we found out! I remember you taking us on Sunday drives without any difficulty, but then we weren’t looking for any difficulties so maybe you found it hard but just never let on? You worked ever so hard to walk both of us down the aisle, (there wasn’t a dry eye either day), so even as grownups we didn’t miss out
Mairéad: I don’t feel we missed out on family time, it just changed the family time that we did have. We had to think outside the box and pay more attention to accessible places. This was not a bad thing as it made us more aware. I have lots of happy memories of time spent as a family.
Have you any fears about the small genetic factor associated with MS?
Mairéad: No, we have overcome everything that has been thrown at us so far—this would be no different and we, as a family, would overcome it (an MS diagnosis) too. What’s meant to be will be – no sense in worrying about it.
What scares you most about MS?
Elaine: What will happen to you as time goes by!
Mairéad: The uncertainty. My main fear was that you wouldn’t be able to walk us down the aisle. I was so happy when you were able to do this for Elaine and then me. Now my main concern is when and if you will deteriorate further.
What is the worst thing about MS?
Elaine: Watching how it affects you, even though you’re a brigilant (our private word brilliant + great) super hero who never gives up!
Mairéad: The times when you end up in the hospital. Also, when your legs get weaker, I wonder if it is deterioration or an attack.
What have you learned along the way and about your selves and the disease itself?
Elaine: You’ve taught me that I’m stronger than I think. Your attitude on never letting anything defeat you and always getting out of bed in the morning has gotten me through some pretty tough times. As for MS, it’s a horrible degenerative disease that you really wouldn’t wish on your worst enemy, but our family is the way it is because of it and together we can take on anything—not that we want to, thank you very much world!
Mairéad: I have learned that we, as a family, are strong. We are there for each other no matter what. The disease is ever changing and no two people with MS will ever be the same or progress at the same rate.
What advice would you give other children of parents with MS?
Elaine: Be supportive when and where you can, help may not always be needed but is appreciated when it is! Be yourselves and don’t let it affect it what you would like to do with your life. I know Dad would have hated it if we ever didn’t do something because he had MS.
Mairéad: Take each day as it comes, some days will be good and others will be bad. On the bad days, be honest with your parent. Talk openly with them about how you are feeling and what worries you. Your parent may be tired or snappy or annoyed but don’t take it personally, it’s not them, it’s the MS. Get annoyed with the disease not the person.
What advice would you give parents with MS?
Elaine: Let your children help you when or where they can! If you’re anything like my dad, you are stubborn and want to do it all yourself, but just let your children be there for you.
Mairéad: Be honest with your children. Nine times out of 10, they are stronger than you think. Don’t push your child away as this will cause resentment. Let them help you when you are down. It does not mean you will lose your independence it just means life will become a little easier.