Two years ago, just after I got married, my husband Greg was diagnosed with Progressive Multiple Sclerosis. Most people don’t realize that there are two types of MS; Relapsing Remitting MS, which is the more common type and, as the name implies, offers some times of remittance, and then there’s Progressive, which my husband has. Progressive is less common and the really bad one. There are no drugs for Progressive MS. There are no “remitting times.” It’s simply degenerative and constant.
When we first met, Greg was extremely active. He went to the gym everyday and he was a former pro-golfer. We would take long walks and he was teaching me to play golf. All that changed once he was diagnosed. For years he had been misdiagnosed with Lyme Disease, something that happens frequently. Ironically, one of the first really bad days he had was the night before our wedding. We were hosting a party at a beautiful winery for our friends and family and our photographers were having us walk through the vineyard. It was extremely hot and humid and Greg could barely walk without me supporting him. What I didn’t know at that time was that he was dealing with two of the worst factors for MS sufferers – excessive heat and stress. Regardless, the evening was still magical and our wedding the next day was absolutely perfect.
Over the past two years, Greg’s MS has progressed. Neither he nor I know what our future will look like. He often apologizes for the “situation” he has put me in. As I tell him constantly, I love him no matter what. Just as I’m certain he wouldn’t have called off the wedding if I was the one with MS, the thought never crossed my mind. True, the plans I had for our retirement will probably look different but that’s OK, we simply need to create a new reality. I also remind him that no one’s future is certain. Any one of us could face some physical disability or life-changing catastrophe at any time.
Does that mean I’m not scared sometimes? Of course I am. I worry about how I’m going to support our family when he can’t work. Last year, when he could no longer snow blow the driveway and I had to do it, I had a bit of a pity party that I needed to handle all of the chores around the house myself. But I’m not really doing it myself. My kids have learned that they need to help out – way more than most of their friends do. At 7 years-old, my daughter is in charge of doing the laundry and cleaning the bathrooms. My 15 year-old son, despite being intellectually disabled, is strong and puts in and takes out the air conditioners, rakes the leaves, takes out the garbage and empties the dishwasher. My 11 year-old daughter cooks, helps her siblings with homework and is my “second in command.” And Greg has become air traffic control – getting the kids where they need to be, managing the family paperwork and picking up the slack where ever he can.
We’ve created a new family reality – one that works for us. I’m learning that Greg will have good days and bad days, that there are instances that I can’t possibly imagine how he’s feeling. I’m also learning that I too will have good days and bad days and, as the caregiver, I’m entitled to that. Our lives might not look the way either of us imagined but we’re in this together and we’ll figure it out. People often say that they don’t know if they could do it. Well, there’s really not an option when you love someone – you just do it. The only choice you do have is how you will deal with it. I’m choosing happiness. It’s a heck of a lot better than the alternative.
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