As you may know, I recently found the time to put together the list of all of the Multiple Sclerosis Resources that I have found over the past few years. One of the sections that I was most excited about putting out there for the world to see and use was the list of books about MS. When I was first diagnosed there were a few books out there, but mainly ones that were medical in nature; whether describing what MS is, listing common symptoms or suggesting foods or a diet that might help those living with MS.
I was super excited to find so many more options out there now, especially ones written by other MSers, sharing their stories. I have had the opportunity (and pleasure) to read a number of these memoirs and thought I would begin a new thing here, which is to share my opinions on those books. I have mentioned that I have written what can be construed as a book, that is still in rough-draft form and “gathering dust” up on a shelf. Because of this, I am all the more eager to read about what others have thought and felt while going through the process of being diagnosed and then living with the disease.
Although each author is as unique and individual as our MS is to each of us, I find an immense amount of validation to read someone else’s words, describing things that I myself have lived through. For a long time, I didn’t talk about many of the details of what I was living with because I believed that when it is said that “no two people have MS the same” it meant that no one else would know/understand what I was experiencing or trying to describe. (Like when I say that I have NO feeling from my waist down, but that my legs are in constant pain, feeling like they are on fire from the inside….which is it? Can’t FEEL or FEEL pain?!?!?!? Even I can see the oxymoron-ness of this.) Finding out I am not alone is one of the most valuable things that I have gotten out of this blog (and my many MS friends on social media) – Apparently I am NOT actually as “unique & individual” as I thought….because there are SO many others out there that DO know what I am talking about, and DO know how incredible it is to hear someone else describe those things that you couldn’t put into words or maybe just didn’t think that anyone would ever understand. THAT is incredibly powerful for me. It makes me know that I am NOT in fact “A MeSs” as my book title suggests and that there is strength in numbers. We can help each other – because even if our stories are different, they all have that common thread that made our paths cross if the first place…..this “fantastical” disease, as I like to call it.
The first book that I am going to review is also the first of this type of book that I read:
by Matt Cavallo.
Finding and choosing this memoir as my first to read ended up proving to be very fortuitous for me. There were so many “resonating moments” (when you are reading the words and thinking OMG – EXACTLY) and I immediately felt a closeness (and kinship of sorts) with Matt. Even though I have never actually MEET him, or even spoken to him, I feel like he is someone that I would call a friend. That speaks to the talent that Matt has as a writer and as a story-teller. He opens up his life, for all to see and by the time you are done reading about his journey, you feel as if you just spent the evening with him, chatting over a few beers.
I began to think of him as ME as a dude. Like me, he is not afraid to put it all out there….talking about some of my favorite topics like SEX and PEEING and SHITTING and”URINATION CONSTIPATION!” He does not hold back on stories like losing his “anal virginity” (“I usually like to at least know the name of the person that I am going to be that intimate with”) during his journey to figure out what was wrong with his body. His description of having an MRI (or two) and what he thought and felt while in the tube, were a vivid reminder of what the experience had been for me as well. The pain he experienced after the spinal tap had me cringing. Not only because of my own experience with this but because he does a phenomenal job of putting into words what it actually felt like, which many know, is no easy task.
All of this is shared in a brilliantly humorous and brutally candid voice that you will quickly come to love. From his description of “flailing around like a beached whale” to realizing he is peeing without feeling it (been there done that) he hits home with the realities of what it is like to go from being happy and healthy to learning that you have an incurable disease. Although Matt’s sense of humor rings through in almost every story he shares he also talks about the raw feelings that he goes through while trying to grasp his new realities.
Life changes when you learn you have a disease like Multiple Sclerosis and Matt shows just how strong, resilient and resourceful he is in this awesome memoir. His life has changed a ton since he was diagnosed with MS but as he says in the book…
“the key is going to be to keep moving”
…even if he does “walk like a penguin” sometimes.
My copy of Matt’s book is a bit dog-eared (GREAT pun, huh?) but there were so many moments in the book that I wanted to be able to remember and return to, that I just couldn’t help but mark a “few” pages.
Some of my favorite lines from The Dog Story are:
“best pimp-strut imitation”
“manipulated myself into an uncomfortable wedgie”
“I recognize that voice. It is God. I mean Radiation Man, the radiologist”
“I am lying in the middle of the hallway on my back in a hospital gown with a bag of pee beside me”
“No pain. No pain. They meant KNOW pain. I did not know pain. Until today”
“I got fucking hit by the fucking bus!”
ABOUT MATT CAVALLO