I posted this meme on social media last week with the caption “Current Life Status,” hoping a laugh might help matters. I’m sorry to say things didn’t improve afterward. I’m not a Debbie Downer or a Sad Sack by nature, and I don’t often write about my struggles here because, well, those of us with multiple sclerosis are already fighting a pretty tough battle. You come here to be encouraged, to be informed or to be reminded that you are not alone. To that end, I strive to be a source of humor and levity, to brighten your day a little bit with the words I clack out of a keyboard.
Basically, my theme song last week was Monica’s video, “Don’t Take It Personal (Just One of Dem Days),” not because of MS, but because of my kiddos. I’ll save you the drama and just give a précis of the situation. My husband and I adopted two brothers from foster care this year. (For the purposes of this piece, I’ll call them Thing One and Thing Two.) The adoption was finalized this April, but we’ve had them in our home for two years. And, brother, those 731 days have been challenging, to say the least. Thing One is profoundly deaf, so we’ve had to learn how to be caregivers for a special-needs child. Thing Two is highly intelligent and very strong-willed, a combination that — as of now — has proven to be as delightful as orange juice and toothpaste.
Last week consisted of two visits to their school, one to meet with a teacher and guidance counselor about Thing Two’s disruptive and defiant behaviors. The other was an IEP meeting for Thing One, who is struggling academically. After two years of pouring everything I have into them, it’s tough to be told that though they are improving, it’s far less than I expected. In a way, parenting is like growing and harvesting saffron — laborious, tedious, and exasperating. And last week was just one of those times when I was so tired that it was tough to keep an eye on the end game. But, believe it or not, having multiple sclerosis actually gives me a greater perspective on life’s struggles.
MS is no picnic, mind you. When I was first diagnosed, I honestly thought my life was over. Doctors offered cold comfort at best, and the internet was, well, the internet. No, if I’m honest, it was a digital “Swamp of Sadness” that threatened to drag me down like its character Artax. It was other MS patients who gave me true solace, who told me it was going to be OK. One woman, a friend of a friend, took the time to reach out and call me. I can’t thank her enough for her kindness.
Not only did she provide me with accurate information about medicine and therapy options, but also she told me she’d had the disease for eight years and was doing well. “Your life’s not over,” she told me. “It’ll just be different from now on.” I won’t make it eight years, I thought despondently at the time. But I did. Now, I’m 12 years past that lowest of low moments and still going strong. As Langston Hughes wrote in “Mother to Son,” “I’se still goin’, honey, / I’se still climbin’, / And life for me ain’t been no crystal stair.”
Days like the ones I had last week can undo a person who has never faced real struggles and challenges — who has never stared down something terrible and spit in its metaphorical eye. But I have. I’ve been through something worse than a couple of cantankerous pipsqueaks and come through it smiling. That kind of perspective is invaluable, and it’s one of the reasons I’m glad multiple sclerosis came into my life. The transformation I’m hoping with my kids might be slower than I’d like, but one day “a change is gonna come.” And thanks to MS, I know I’m strong enough to see it through to the end.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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