This post first appeared in MS & Me on March 9th 2017. Please feel free to visit MS & Me to see numerous other posts
My MS fears have changed over time and yet they have stayed the same. You see I never really worried about what MS would do to me but how it would affect my family.
My first fear, post diagnosis, concerned my ability to continue working; the ability to provide for my family and continue in the hunter/gatherer role. Would my MS progress rapidly, rob me of my independence, confine me to a wheelchair and make me a burden on my family. I was 31 years old with two small children and I just didn’t know the answers and I was worried.
I worried whether either of my two children would have MS; that fear is still with me. As you know more women are diagnosed with MS and I have two daughters. There is a hereditary factor with MS and I have a maternal uncle who lives with MS; the odds were stacking against my two girls. I have twenty nieces and nephews and many of them have children of their own and I have a grandson. I sometimes wonder whether any of them will have MS.
Would I be able to continue with my fair share of household duties or would Jean have to carry a disproportionate load, whilst maintaining her nursing career? We found our level and Jean never complained but I did feel ‘guilty’ for not doing enough. Jean’s proportion has grown steadily over the years as mine has decreased but this is no longer a cause of worry; it is reality.
I had a number of other concerns but most of those only became relevant as an event approached; Birthday Parties, First Communions, Confirmations, Graduations, Holidays. Would I be an active participant or merely an observer? I did play an active part in all of these events. As my MS progressed and my precious girls matured into young women I worried if I would I be able to walk them up the aisle if they decided to marry? The girls did decide to marry and with a combination of grit, determination, pure stubbornness and a massive amount of positivity from the wedding guests I managed to fulfil my role as ‘Father of the Bride’ and walked up the aisle with both girls.
When I heard that I was to become a grandad I worried whether I would be able to play with our grandson Jack? Would I be able to hold and cuddle him? The good news is that this fear/worry was very short lived and Jack will be loved as much, if not more, than any grandson in history. Our playtime together will be different but every bit as enjoyable.
Multiple Sclerosis (MS) is different for each and every one of us and my one piece of advice to anyone diagnosed with MS would be not to be consumed by fear and worry. A diagnosis with MS is life-changing not life ending (although it may feel like that at the time).