Multiple Sclerosis: The Grief Cave vs The Pain Cave

I’ve been kicked out of online MS support groups. I’ve been, politely, asked to tone down my “rhetoric.” I’ve been shunned, because I’m, “not disabled enough.” Bottom line, I’m not negative enough. I don’t want to wallow in self-pity 24/7 and I advocate for this very common, yet controversial thing, called exercise and functional fitness. Never mind that most medical professionals will admit MS pain is more likely derived from non-activity over nerve damage; people don’t want to be told what they don’t want to hear, and a lot of people enjoy living in, what I like to call, the “grief cave.”

I wasn’t always this way, though. When I was diagnosed, at age 20, in 2000, I did everything the doctors told me: I took a round of steroids, I went to physical therapy (PT), and I read all the brochures. I believed those brochures, too. I figured I had a set amount of time to do everything I wanted to do before I turned into the immobile and stagnant person on the front. Over twenty years ago, the image of MS was doom and gloom on the path to, permanent, disability.

I tried fighting back, and ignoring, all the MS symptoms, at first. In fact, I went over ten years into my diagnosis before I started to recognize that I couldn’t do a lot of physically taxing things, at the same level I once did. I stopped playing competitive tennis, around that time, because my endurance was terrible, and my legs felt like bricks on the court. I circled back to those brochures. I was on my way to being the poster child. I didn’t care about anything and, without realizing it, I was clinically, and severely, depressed and kept having anxiety attacks over everything. I didn’t want to participate in life, which is something, even those close to me, still don’t know. I felt like the world was moving all around me and all I could do was sit back and watch. Without going into detail, I did a lot of irresponsible things for no other reason than it made me feel like I was in control. Looking back, I needed professional help and, to this day, probably the only thing that sustained me was my family because I didn’t want to disappoint them; even though I, still, felt like a giant disappointment to myself.

During that time, I became, completely, stationary, and overweight. I couldn’t climb even one flight of steps without being winded and I found myself sitting on online MS message boards soaking in everyone else’s negativity. Those message boards were supposed to be support groups, but no one was being supportive. No, we all just sat there, behind our computer screens, and took turns typing out worst case scenarios and trying to one-up each other with bad life experiences. All of us were stuck in the “grief cave.” We were all stuck in a place of despair, mourning our former selves, living in the past, assuming we had no valuable futures. I lived in that “grief cave” with those other people for, several, years until, one day, a switch flipped. One day, I woke up and accepted that my life was hard, but it was going to get even harder if I just kept feeling sorry for myself. Yes, I felt terrible, most days and yes, I experienced odd symptoms and a lot of pain, but that was going to happen whether I sat at home or participated in life. I don’t remember the exact moment I came to realize this, but I thank God, for the epiphany. I don’t think I’d still be alive, otherwise.

I, successfully, moved from a career in politics to one in education. I got a good job, I started meeting new people, I got off those message boards and I, mentally, threw away the brochures. I, also, started reading about things like diet and exercise and their connection to MS. I was, completely, out of shape, but I started walking around the university campus, where I worked. I realized I felt better when I moved around, so I joined the university’s gym. Once I felt comfortable with that, I decided to level up and I found CrossFit. Yes, you read that right, I decided to move to the top, so to speak, when it comes to stereotypes in the fitness community. I looked into CrossFit, extensively, though and two factors stuck out to me, 1) I could adapt all the movements and 2) self-proclaimed unathletic people could be successful with the workouts. People I knew did CrossFit and a lot of those people didn’t even play sports as kids; but they could do CrossFit.

My first few days in a CrossFit gym were ugly and I, almost, quit early on in the process. It didn’t help that the, original, gym I found, started going downhill several years into my fitness journey. There was a revolving door of members and coaches and, most of the coaches, didn’t even bother to Google MS, so I started to feel, incredibly, isolated. I found myself going back to the, original, message board mentality that I was never going to be successful at anything meaningful, ever again. I contemplated quitting, but then I found online adaptive fitness outlets and, slowly, adaptive fitness became a part of CrossFit, on a much larger scale.

CrossFit unveiled the first adaptive divisions for the CrossFit Open, in 2021 and last year, five female and five male neuromuscular athletes competed on the floor, in Madison, Wisconsin (USA) at the CrossFit Games. Brett Horchar won the men’s neuromuscular division. He’s several years younger than me, but we were diagnosed around the same age and, thankfully, in this modern era he had a, completely, different experience. Instead of going straight home, he went straight back to the gym. He refused to stop his fitness routine, but I like to think it’s because no one gave him a brochure. I like to think those brochures don’t exist anymore. As for me, I’ll leave the Games floor to others, but I found a new (and way more supportive) CrossFit gym, a few years ago, and I just completed coursework through the Adaptive Training Academy and can now call myself an Adaptative and Inclusive Trainer. I don’t know if I’ll ever end up using those credentials to train other adaptive athletes, but after everything I’d been through with my own fitness journey; attending that in-person seminar and passing the exam felt like a full-circle experience. As I tell people, I’m still not “good” at CrossFit and there are some movements I will have to adapt for the rest of my life, but I don’t sit around feeling sorry for myself, anymore. Those days are over.

Eventually, my hope is that MS societies will start providing people with as many resources to fitness as they do disability programs. Don’t get me wrong, I’m not suggesting that everyone can fend off MS symptoms with simple diet and exercise, nor am I suggesting that everyone with MS should drop everything and find a CrossFit gym, but you do need to find something; some activity that will ensure you don’t get stuck in moments of despair. You, also, have to accept your “new normal.” Life with MS is hard and the vast majority of people around you, including medical professionals, will never understand, nor do some of them want to understand. The way I look at it, though, if something is hard, then you might as well get something from the hard part; a “prize” of sorts. Is it easy for me to do CrossFit? No. I hit the “pain cave” a lot, but that “pain cave” is a lot better than the “grief cave.” You can recover from the “pain cave,” but you may never find your way out of the “grief cave.” Trust me, I almost stayed there too long. Anything you do to stay moving will benefit you both physically and mentally. Everyone deserves a sense of accomplishment, so find yours and go from there. Let go of the notion that you can’t do things. It’s a new world for MSers. It’s time for us to be seen. It’s time to throw out those old brochures. The face of MS is changing, whether I’m allowed in the support group or not. We can do more than we think. Don’t let anyone tell you otherwise, including yourself.