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…"