A question for the Multiple Sclerosis Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

My book would be called “Misfired” as I had a lot of other aims in life before my diagnosis, my professional and my personal life that I was aiming towards that completely went in another direction due to this disease and my diagnosis. My current chapter would be called “Uncertainty,” for obvious reasons in the climate that we’re living in today, in the COVID-19 world, and the fact that my next Rituxan treatment is in a month or so and I don’t know if I can even get it or if I should delay it because I’m in talks with my doctor about further weakening my immune system when there is a virus going around the world. And in addition, I was recently diagnosed with a second autoimmune condition that the treatment would involve medicine that would further lower my immune system. So there’s a lot of questions and a lot of uncertainty about what my next step will be to manage my diseases. So “Misfired” is my book and “Uncertainty” is the chapter I’m currently in.

If it were a book, “Living on the Edge.” Why would I title it that? Because I think of somebody teetering on the edge of something, physically standing on an edge and it’s kind of sink or swim at that point. And to save yourself from falling, you have to maintain balance, whether it’s physical, mental, a combination of both. Chapter I’m currently in? Oh my gosh. I don’t even know just, “When Will It End,” meaning when will summer end? Because the summer heat tends to be for me and for … from what I understand … many other MS patients, heat tends to be quite intolerable. So it’s frustrating when even going from a building to the car or back, you tends to overheat and it gets quite intolerable. Symptoms, re-arise, resurface. And it’s unpleasant, to say the least. And I think that’s really it.

“Surviving Through Hell” would be the title, and I’m currently in the chapter of “Fighting Against My Own Body,” and it’s beating the crap out of me.

The name of the book would be “Multiple Sclerosis: This Is It.” The chapter that I am currently in right now is, “Enjoy Life but Not Too Much.” I chose that chapter title because things right now for me are very well. I recently got married. We want to buy a house soon. We want to have a child. So that’s where I’m at right now.

Oh. I would title the book, “There Is Hope.” And I would title the chapter that I’m currently in as, “Be Your Own Advocate,” which I think is very, very important.

Oh, I think call it “My Life With MS.” That’s what my wife would probably call it. I’m sure she could think of a better title. In any way, I’d say we were in the middle because I don’t believe her life is ending soon, and it’s obviously not beginning. She’s going on 40, but I’d say we were somewhere in the middle of it. A chapter of, I don’t know…”2020: The Year Everyone Went Crazy.” Thank you.

Books. The chapter now? Well, “It Could Be Worse,” I guess it could be the chapter. I do look at myself and think that I’m lucky I’ve been like this for 30 years. Well, it’s been 30 years and I’m still mobile. The title of the book? No, it could be worse. That’s a good question. Yeah, it could be worse. Like I said, I’m better off than many people. Okay. Title. “Don’t Be Scared.” “Don’t Be Scared.” There you go. Yeah, I like that.

My book about my life would definitely be called, “Hot Mess Express,” which is okay because I’m always laughing and I try to smile through everything. I would read my book because it would kind of be funny. So, I’ve been through a lot, but that’s okay. “The Hot Mess Express” means I’m a hot mess. You know what? It is what it is, and that’s all there is to that.

I would call the chapter “Complacent” because I feel like every day is Groundhog’s Day. I wake up and pretty much do the same thing every day and nothing is new or exciting, so I’ve become just very complacent in my life. I don’t really know what to change anything. I still need to work, so I can’t change that aspect of my life, and I’m unable to add anything exciting into my life. I can’t travel right now because of COVID and nothing else really excites me, so it’s like wake up, work, watch TV, go to bed, and then I repeat it every day. So I’m pretty complacent in my life right now, and it’s frustrating for me because I would like to do more things but my physical limitations get in the way sometimes, and it’s hard to even go to the park or outside because I get really hot right now. It’s about 100 degrees outside, so I cannot go outside for very long periods of time. My body just starts shutting down.

“Welcome to the Mouth of Madness,” because it’s what it is, it’s pure madness. What chapter? Probably just “Learn to Laugh.” I’m on the “Learn to Laugh” chapter. At this point, nothing shocks me anymore, nothing depresses me anymore. I’ve just learned how to laugh at the stupid stuff that comes up.

The title of my book would be, “MS: My Strength,” because I don’t feel that MS is something negative. Living with it, I’m basically forced to push through, push through whatever it is that’s bothering me, push through the day, push through with raising my child as a single mom, just push through. And the chapter that I’m in right now is “Uncertainty,” just like MS, it’s uncertain. So life right now is uncertain, but I’m still just pushing through my strengths.

Maybe “The Horrible No Good Condition” might be the name. I’m not sure what chapter or what title I’m currently on. I guess “Transitioning.” There’s a lot of transitioning, whether it be doctors, they’ve decided to quit, retire, moved to California like… So I guess it just goes to pen. It’s ever-changing, whether the condition or the chapter, every day is different.

I would probably name it “What MS Actually Looks Like,” and the chapter I’d be reading would be “How to Support That Person” because I think it’s really important for people to understand what types of support and how to support MS people. I feel like they just need to understand how they can better support them.

The title of my book would be “My Life as a MS Warrior.” Why? It’s the story of my life. Dealing with it, being with MS. And the chapter that I’m in now would be “Four Years Down and a Lifetime to Go.”

Oh, if I had to write a book, I would call it, “The Long Journey,” because it is a journey. I mean, it is part of your life until the day you die. It doesn’t go away. It doesn’t get better. I mean, even with all the therapies out there, the disease keeps progressing very slowly, but surely. And I definitely do feel that it is a lifetime illness. And the scientists, they’re doing a fantastic job of finding cures to… Not cures, but remedies to slow the progression. But nothing has come across that can actually stop it or have some sort of shot that you don’t get it, that sort of thing. That would be wonderful. But basically, when you get MS, you just have to stay positive and not let it take over your life and just take therapy very important because you have to have some sort of control. And that’s the problem with MS, that it’s scary because you never know from one day to the next if something is going to happen. But in the journey in the book, you have to live and have fun and still make the very best of your life and try to stay positive. That’s the key. My journey and my book is not over, but I pray that in my journey and in my lifetime, they will develop a cure.