This week, I got together for lunch and a chat with one of my MS friends, who also happens to be the mom of some of my favorite kids ever to pass through my classroom. When I first met her, a lot of things stood out for me about her. She had a big head of red curls, not so different from my own. She was an actively involved parent who never made any excuses for her kids. It was always refreshing to me when she would say things like “I know my kids”… and even when she didn’t particularly care for their behaviors, she accepted what the teachers said exactly for that reason. As the homeroom teacher for her letter of the alphabet, she and her husband would come to back to school night, tell me who their son was, which was normally followed by “he’s probably the biggest kid in the class”, which was always correct.
I am not exactly tall, but they were right when they said hes probably the biggest kid in the class. I taught this kid for multiple years, and in the long run, I let him sit at my desk because can you imagine how hard a student desk must be for someone so tall?
We became friendly through the years, especially after I was speaking at an event that she and her husband came to, and that was when we learned that we both had this one huge thing in common: Multiple Sclerosis.
Not exactly something you’d like to have in common with someone, but it does cause an instant bond.
On the surface it seems to many that Stacey is blessed with mild symptoms at best, and thus she faces a lot of the same disapproval from others who don’t know what she goes through on a day to day basis. Like all of us, MS is only one part of her life that has been filled with her share of trauma, all of which (as we know) magnify any and all symptoms that we might experience.
The thing that is truly different from Stacey and myself is how we arrived to where we currently are, as she is only a few years older than I am. She had a family young, stayed home to raise her kids, took an active role as the PTSO president, and when her kids were all done with high school she went back to school, earning her Bachelor’s Degree, MS and all. What an accomplishment!
She asked me to be honest with her, since we figure we hadn’t seen each other in person in probably two years, and she asked me if I noticed any difference in the course of her MS. For a second, I thought about not being honest, but that isn’t me, and she knows me well enough to know I would be honest. I looked up at her (she’s tall, and I’m vertically challenged), and I saw the tears in her eyes as they formed in mine as well… and I told her that I did indeed notice a big difference in her word recall and her focus. We are both language lovers and facing a deficit in word recall is devastating.
It’s hard to explain to people what cognitive issues feel like but this is a pretty decent image.
It’s not that I told her anything she didn’t already know. All I could do was give her a hug because I know how cruel cognitive symptoms of MS are to a patient. Even harder was what she said next, and so many of us struggle in the exact same way as Stacey is right now. She looked at me, both of us with tears in our eyes, and she said that she didn’t know what her purpose was anymore. Her purpose was being a mom and raising her kids who are now grown. Then her purpose was going to college, earning that degree. Now that she wants to work, she doesn’t feel capable because how can she explain to a prospective employer that she randomly can’t find a word when she needs it to articulate her thoughts? How can she explain to prospective employers that she uses medical marijuana as part of her approved treatment plan and consequently any drug testing will come back “dirty”? The general public is so misinformed that they don’t understand that having a medical marijuana card does not mean that we sit home smoking weed all day long. We simply use it to manage certain symptoms that can not be managed by tradition pharmaceutical medications.
My heart goes out to all MS patients, or patients who suffer from any chronic illness for that matter. It is hard to find your purpose when you feel like you have been robbed of qualities that would have made your purpose perfectly clear otherwise. It’s hard to reinvent yourself when you feel beaten down by something you have no control over. It takes a lot of introspection and self-honesty to rebuild yourself when you feel like you’ve been torn apart. I cried because I related so well because I experienced the same heartache when I “retired” because I felt lost and useless. My purpose was taken away from me.
This is another graphic that people might be able to relate to where it comes to cognitive difficulties.
My best advice to Stacey, or anyone in this scenario really, is to first focus on self-care. By doing this, we can begin to appreciate who we are, flaws and all. So often when we are driven to a purpose beyond ourselves, self-care goes right out the window. By directing attention to ourselves, we subconsciously understand that we are worth it, and we are awakened to the qualities and skills that we still have to offer despite what MS (or any other illness) has taken away. Then slowly, we can begin to figure out who we are, living life with our new normals that are constantly changing.
Part of my self-care routine includes acupuncture and chiropractic care every week.
It’s not easy, and it is a process that can be extremely frustrating. But what’s more worth working on than ourselves? We can’t possibly give to anyone else until we are comfortable giving to ourselves. After all, as the quote goes, “An empty lantern provides no light. Self-care is the fuel that allows your light to shine brightly.” So shine on, my friends!
… and of course a (non-negotiable) daily yoga and meditation practice!
