Stories to Inspire
Living and Loving with MS
A loving memory, a spouse's experience, with MS
By Linda D. Britton
To all the husbands and wives whose journey has embarked on the challenges of multiple sclerosis in the one you love, hold on tight. But hold on. You are about to encounter the richest human experience you can imagine.
MS at the onset is very frightening for both the individual with MS as well as his or her spouse. It takes some time to adapt it into your life. Soon after my husband, John, was diagnosed, we read an article about MS. This was our first taste of what might come. It was very negative and terrified both my husband and me. Quickly, we gathered more information, and that helped.
Our "normal" became something different. Our lives, perfect as we thought they were, changed very quickly. If you have children, their lives change in an instant as well. Our children were quite young - Jamie and Josh were ages 5 and 4 at the time of John's diagnosis. At the onset of symptoms a few years earlier, Jamie was about 6 months and Josh was a bun in the oven. We wondered for several years what we were dealing with.
John and I got his diagnosis over the phone. I was concerned about John and the family, including the fact that John had a job which required travel. I talked to the doctor after John was finished and I asked, "What am I supposed to do? We have two little kids." The doctor answered, "Keep your life as normal as possible." I thought at the time, "You just dropped a bomb on us, and you are suggesting normalcy." But over the years, I realized that this was the best advice I could have gotten.
To manage, grow, and maintain a healthy family with the presence of a serious chronic illness, is a monstrous challenge for everyone. We didn't tell the kids right away. They were young, and we had high hopes that John would be one of the lucky ones who wouldn't be greatly affected by MS.
Jamie was in first grade when the local MS organization was sponsoring an "MS Read-a-Thon." She got a lot of sponsors, obviously, because John had just been diagnosed. She watched quietly while people with MS did presentations to her class. She felt so sorry for them, and she even won the prize for the most money raised.
Then our daughter overheard the babysitter tell the other kids, "Jamie won because her dad has MS." We hadn't yet told Jamie that her father had MS, and I felt that we were wrong to not tell her sooner. So, my personal advice is to tell the kids as soon as you know, whether you think they will understand or not - because they need to hear that from Mom and Dad, and not from the babysitter.
We spent our life with MS in constant adaptation. We were a team in everything we did. I'd work during the week, while John would shuttle the kids to school, and soccer, and dance. I don't think we ever missed one of their functions, and they were both very active kids.
I had a demanding job, so John helped me with things at home. He would pick up the dry cleaning, take something out of the freezer for supper, hang up the laundry, and do woodworking. Then a change came in our life, and we opened up a small, used and rare bookshop. John was brilliant, and the most well-read person I have ever known. We eventually took our little bookshop online, adapting once again.
Our weekends were jammed-packed with projects at home. We worked on cars, we laid linoleum and tile, we did anything that needed to be done around the house.
Later in his life, John was the brain, and I was his hands or legs. He would sit on a stool by the car, and have me remove this bolt, remove that part, or whatever, and we kept our cars running that way. When we were done, we would laugh and smooch... so proud of ourselves, that we saved that $500.
The spouse with MS has to work hard to make sure he or she is a pleasant and loving part of the family unit. And everyone else has to do the same. As the spouse of someone with MS, you will work harder than you ever imagined, handling your responsibilities, as well as those of others.
The key in my situation was that my husband was always loving, and always did absolutely as much as he was physically capable of doing. What that did, was to keep me in the role of wife, rather than caregiver, for many years. And it was through that experience, that we maintained our "normal."
Here's another thought I have for you. Put MS in the MS box. It is perfectly fine to be mad at MS. (I could think of a few choice words for it myself!) Love your spouse, hate the MS. In order to do that, I found that I needed to recognize when I was angry at MS. Many times I had to stop, take a breath, and realize I was mad at MS. When I did that, I was free to love my husband, as the person he was.
The richness that I mentioned above was incredible. Chronic illness causes one to dive deep into his or her spirit and character. It is contagious to the people around you. I watched my entire family grow to great depth, as we were challenged in this way. We are better people for it.
|Last Updated on Monday, 25 March 2013 12:24|