Awkward Bitch: My Life with MS

On Christmas Eve, my boyfriend's incredible parents gave me a book which I have been dying to read for quite sometime. The book was written by Marlo Donato Parmelee, and it chronicles her journey with MS.

Reading the book made me incredibly emotional because I was finally able to read about another individual who had almost the exact same feeling(s) as I have/had. It gives me hope knowing that, when I put pen to paper and write about my MS journey, others will be able to relate in the same way.

It is an incredibly easy read, and I highly recommend those enduring MS or those caring for an individual with MS read this book.

I copied down some quotes from the book that have immensely useful information and sound identical to what I have been saying for years (be advised that some of the quotes contain vulgar and/or offensive language):

"I left the clinic with two feelings: relief for knowing what I had, and an underlying grief because things would never be the same. I was in better shape than my husband and cousin, though. They walked out with heavy hearts. They kept telling me how brave I was. This was not bravery. This was just life."

"I felt that whatever was going to happen was now set in stone. There was nothing anyone could do."

"I felt like there was a reason I got this stupid disease, and I was going to find that reason. I was not going to let this stop me from living my life the way I wanted to live it. I was not going to let this stop me from being my glamorous, red-lipped, musica-fashionista self. Slamming my glass down after another swig, I declared, I am not letting this stop me. I am going to leave my mark on this city if it fucking kills me!”

"Believe me, I am not brave. I said. Firefighters are brave; people who have choices are brave. I don’t have a choice, do I? I can’t pretend I don’t have it. I have to get on with things."

"Our nerves are like a system of wires throughout the body. They are made up of nerve cells that are connected by fibers called axons. Axons send nerve impulses, telling the body to pick up a glass, for example. Myelin is the layer of fatty lipids and proteins that protects these axons like insulation. In MS, the immune system attacks the myelin, causing this insulation to become inflamed. That inflammation can either heal or leave scars. When these scars occur, there is a break in the nerve impulses. For example, the message of picking up a glass gets slowed down or faulted. What happens? You break half your glass set, like me."

"If you keep a positive attitude, you will not get sicker. Tell yourself what I told myself: I will never be in a wheelchair."

"Some people cannot deal with illness. This doesn’t make them bad people; it’s just the way they are."

"From the days of my diagnosis, I did not want anyone to feel pity for me. I felt that I had a lot going for me and that a stupid little disease like MS was not going to make me any less magnificent. It was not going to make me less talented, less creative, less intelligent, or less anything. Fuck that, I thought. And fuck anyone who pities me. I still think that, by the way."

"I began to feel a loneliness that I had never quite felt before. I had the support of William, family, and friends like Laura and Colin, but essentially, I was alone with a disease in my brain. Knowing that there is a disease trying to debilitate your body is a lonely thing. No matter who supports you, the ultimate person to help you is yourself.

"I am not a particularly religious person, though I am a spiritual one. I believe that God helps those who help themselves, because what God is, we are extensions of him. I don’t believe in sitting around, waiting for miracles. I wholeheartedly believe in miracles, but I believe that each of us has the power to make a miracle happen ourselves."

"In all the weeks of learning about other people, I was learning about the most important person of all: myself. I was just starting to learn that I had an inner strength that up until then, I never needed to discover. I was also learning that I had dark places inside me…"

"I tried to stretch myself too thing. I wanted to overcompensate for having an illness. I wanted to be Supergirl, no matter what the cost. I thought that if I made myself run a high speed, the MS would not be able to keep up."

"…it began with a few nights of bad sleep. I would get into bed, and just as my body started to relax, I would feel a tingle in the bottom of my foot. The tingle was a tightening of the muscle. It would not let up and kept me up for most of the night. Each night the feeling got a little tighter. Then without warning, the situation worsened. It was probably the fourth night when the tingle in my foot started to creep up the back of my leg to the knee. The tingling became a prelude for a pain that became my nightly torturous companion. The tightening had become a feeling of ripping and burning. I felt like my leg muscle was being ripped apart and twisted. After a few more nights, the pains began to sneak into the other foot and leg as well. In the States, the term ‘charley horse’ is used when your foot cramps underneath it and up into the back of your leg. This was like a double charley horse orchestrated by the devil himself."

"Killing myself started to look like a pleasant escape from the hell I was in."

"I was leaning over to zip up my jeans, when a weird thing happened. As I leaned my head forward (chin towards chest), I got a feeling of a zap in my foot. It was not a bad feeling. It was a beautiful jolt of electricity. It tickled, actually. It was the first time I had felt something good in a while…it’s called L’Hermitte’s sign…it’s named after the man who discovered it. It is common in MS. An electrical impulse goes down the spine and possibly the legs when the person brings his or her head forward. Why does this happen? I asked…it says that it’s from lesions on the spinal cord."

"Don’t tell me everything is going to be OK! I would roar. I am in so much fucking pain! None of the painkillers have helped me! I want to jump off the fucking roof! Do you understand? I want to kill myself. I want to die. I want to fucking die…Why the hell does it have to be so hard? I am so tired. I have never been so tired…"

"With this disease, if you give it an inch, it will park a truck in it."

"Then I began an assault of blaring screams at God. 'What the fuck do you want from me? Do you want me to learn something from all of this suffering? All I’ve learn[ed] is that suffering sucks!'"

"I could not see the color red properly. Bright reds looked dark red and slightly brown. I hadn’t realized it until the exam when the doctor showed me a red object and asked me to describe the color. This was happening because I had optic neuritis, a swelling of the optic nerve the runs behind the eyeball."

"You will pull yourself together. You will pick your heart up off the floor, put on your red lipstick, and get moving."

"…relapsing-remitting MS is like being in a bad relationship. Sometimes everything is great, and life is fantastic. Other times, you are treated like crap and wonder how you ever got there. You cry every time, even though essentially you are crying over the same thing. It will never get better, and your friends keep telling you that you are beating a dead horse. It’s a cruel, vicious cycle. Unlike a bad relationship, though, you cannot get away."

"The problem with my scenario was that my bosses continued acting like they were wondering why I was still sick. So many times, one of them would say to me things like, “Shouldn’t you be feeling well by now?” It became increasingly upsetting."

"If I have a disability then I am going to make use out of it. I am going to make lemonade out of these lemons."

"I began to realize how many challenges there are for those people with any disability, not just MS."

"Look at us (people with Multiple Sclerosis). Look what we can do. We are fucking unstoppable."

"Getting MS had given me the opportunity to become more sensitive to other people’s needs. It opened my eyes further and gave me more purpose."

"Through trial and error, I found taking primrose oil to be greatly beneficial to me. I also started eating better. I ate more oily fish. I tried to eat less cheese. OK, I can’t stop eating cheese every day! I love it!"

"I also started to rest when I felt tired. I was realizing that like infections, stress was a trigger for my relapses. Every single time I had a relapse, I was either completely stressed out, had an infection, or both."

"When you hear the word disability, remember to focus on the ability part! You can do anything you put your mind to! Don’t let anything or anyone stop you!"

"I sighed. I was a changed person. Pain had changed me. Experience had changed me. Multiple Sclerosis had changed me. I was not the same girl I used to be."

"I am in fact, better than the girl I used to be. I am stronger and better in every way."

"I would not change my life for anything. I have been through too much. I have learned too much. Now I know what I am made of. I am fabulous, [] gorgeous, [] tenacious…"