Before I was diagnosed in 2001, I had no idea what MS meant. As an exercise enthusiast and aerobics instructor, my adventures had taken me and my step class to walk for MD, MS, ABCDEFG. What did those letters mean? Were all these alphabet diseases related? didn’t only hold people get them? Were they all a death certificates waiting to be signed?
Love Sick
by Cory Martin (Kindle Edition)
So, You Have MS. Now What?: My Personal Journey with Multiple Sclerosis
by Grace Augustine
Stumbling In Flats
by Barbara Stensland, Janis Winehouse (Kindle Edition)
Faulty Wiring: Living with Invisible MS
by Suzanne Robins (Kindle Edition)
One: The Long Walk Home
vacation. The day that every public school student and their teachers have
looked forward to since mid-August. For me, this summer held an even more
special ingredient. In two weeks my newborn would celebrate six months on this
earth and we had the entire summer to play, learn, and laugh; starting with
this morning’s mile long walk to the public library. He would enjoy the
stroller ride and I could begin to document his academic beginnings.
stroller with bagged apple slices, yummy kiddie cookies and bottled water, my
library card, sun screen and a spare diaper. My walking routine had been traded
in for feeding schedules and mommy duties lately, so I looked forward to this
hike for more than one reason. My legs were getting lazy and my Reeboks were
looking too clean.
layer of extra strength sun block on baby’s face, secured his new Old Navy ball
cap, and lowered the stroller visor to ensure that harmful rays were
filtered. My own sun hat was in place and sunglasses secured.
the sun to our backs and I made certain to comment on the sights of downtown
Fairmont as we crossed traffic and entered the more historic portion of our
small city. The morning was clear and traffic was light, so our journey was the
perfect way to begin what promised to be the perfect summer sojourn from
academia.
with a stroller full of colorful children’s books for baby and two crime novels
for me, I carefully tucked my now sleeping son back into his chariot and began
the return walk home. The sun was a little higher and its rays practicably
warmer, but it felt good. I was on top of the world.
get much better than this, I remember thinking and wished for the umpteenth
time that I knew how to whistle. This just seemed like the perfect moment to
let out a light-heart-ed whistle. I had the perfect child. This was a perfect
morning, very near a perfect library, the perfect distance away for the perfect
morning stroll.
all perfect plans, the bottom fell out and all hell broke loose. Four city
blocks from home, my vision suddenly blurred and my right arm began to tingle
in a strange, limb-falling-asleep manner. For some reason I could no longer
fully lift my right foot and my mouth felt like it was actually pull down in
what I imagined was a comic book grimace.
really beating down on us by then and there were no shady places to rest for a
moment and try to collect myself. This was really, really weird. If it was just
me, I could crawl home. I would fit right in with the street folks who vacated
the empty shop door wells on the upper end of town. But it wasn’t just me. I
looked down at my little miracle and attempted to adjust the stroller visor,
but my arms were becoming strangely useless and I decided to conserve my
strength for crossing the highway
drink. That’s the ticket. I remember focusing on that water bottle with
such an intensity that I had hoped to will it to rise up to me and rinse me in
its refreshing contents. But it didn’t. Remember? My perfect morning, my
perfect plan was no longer perfect; so any magical, lifesaving actions were
safely resting in the stacks back in the fantasy section of the library.
staring out at the four lane (thankfully not polluted with traffic, yet) and
praying to God that I could safely push my son’s stroller to the other side. My
legs were so weak and my right foot had to be practically dragged.
the stroller would help pull me in the right direction.
curb and plunged my son and myself into the middle of the highway, steeling
myself to ignore the angry car horns that surprisingly did not sound. Or maybe
there were none. I really do not know. This portion of my return walk home has
gone to the selective portion of my brain, for which I am grateful. I really do
not want to know how we crossed that highway. It’s more important that we did.
not know exactly how I managed to cross that street to complete my journey over
the uneven sidewalk to my own front porch. One concrete step up to the front
walk and two porch steps to reach the front door elude me. I do remember
sitting on the front step beside my sleeping baby, wondering how on earth I was
going to move that stroller to the front door. I was terrified at the prospect
of lifting my child in my numb arms and actually carrying him the distance to
the door. By now I couldn’t feel the fingers on my left hand and my right arm
hung uselessly at my side.
watching over me that day. Of that there is no question. I think I might have
dozed there in the shade of my front yard pine tree because the next memory I
have is that of my son making small, conversational noises from his stroller
seat. Without even thinking I reached for him and rose from my perch to carry
him inside, away from the heat.
horrible walk home had never happened. I had to stretch my imagination to
recall the frightening events of the afternoon, but I would not be convinced
otherwise. And, of course, as paranormal fate would have it, the
lack-of-sensations returned as soon as I changed and fed my son.
but it was there, what it was. I knew that medical attention was
absolutely essential. The only physician I knew to contact was my OBGYN, who
blessedly granted me an emergency visit. His advice: Go to the ER, straight to
the ER, do not pass GO, do not collect $200.00. This was no post-natal evident,
but I could tell he had his suspicions.
from my then spouse, but I had a new reason to take care of myself. I hadn’t
planned to be a mother at the age of 40. Nor had I any plans to contract some
lethal disease.
into the hospital, I was poked, prodded, x-rayed, cat-scanned, and MRI’d.
Extensive tests ruled out a stroke and there was no conclusive evidence of any
other sensible condition. The entire time I spent in the hospital my biggest
concern was the welfare of my child. My mother was out of town and I didn’t
want to worry my father. Being of an advanced age for a young mother, I didn’t
have any friends around who were free to help me out.
relatively close girl friend whose work allowed her a little more freedom than
others and she agreed to hook up with my husband and lend a hand. (They ended
up married a few short years later.) Until recently I thought that my son was
in her care exclusively until my brother and sister-in-law informed me that
their baby nephew had spent quality time in their hands.
I returned home to continue my summer vacation.
to walk, feed myself, and enunciate words. I couldn’t hold my child without
fear of dropping him. On July 1, 2001, I had a spinal tap and was officially
diagnosed with relapsing-remitting multiple sclerosis. I was prescribed Beta
Seron. I learned how to self-inject and I dealt with it. My son’s favorite movie became my VHS
instructional video on how to inject Beta Seron. To this day we laugh about
this and I fear that I will be forced to convert that old VHS to a DVD for his
eighteenth birthday! If he chooses a career in medicine, I can blame it on that
video!
adventure began that summer. My first lesson was to find out what MS was and
how long I had to live.
nearly fifteen years ago and I am still kicking; but the true definition of MS
remains a mystery to me and will probably remain so until my final breath.
Even when I finally wrapped my brain around my condition, reading about the disease or even, horrors!, writing about it as the furthest thing from my mind. And then this happened: Last night the world lost a wonderful person to the complications of MS. The world is a darker place without the light and joy that my friend Jamie offered with her genuine smile and positive presence.
super Power? is
dedicated to a girl who called me
“sister”. Younger than I, she followed me around and emulated my
behavior as a teenager to the point of humiliation. I had no idea that this
beautiful, popular, magnetic girl never knew how I much I admired her
“picture perfect” life that was very different from what I felt was
the chaotic circus in which I grew up.
to appreciate the wonderful family I’ve been gifted. Yes, we are more than a little nutty, but I
truly believe that my family far exceeds any I’ve ever known. When we love it
is unconditional.
after I received my sentence. We semi-laughingly compared similarities in our
situations. We had swum in the same pool growing up. We had chased some of the
same boys. We had spent hundreds of hours haunting the same dives. Was there a
link to this strange dilemma we were in?
been to read about this MonSter, Jamie was less studious. I would have read for
her had there been a more open means of literary support. All I could find was
technical manuals that spewed medical jargon and boring details that I really
didn’t want to understand.
these pages is just a little iceberg teaser. More and more people are sharing
their MS in helpful, inspirational, informative tomes that I admittedly love to
read. We are not alone in this nightmare and them more confidantes we collect
our world is just that much larger.
that would be it. In misery we look for company, right? In this 21st
century of Star Trek technology we are capable of contacting thousand, millions
of like-minded individuals. Face Book, Instagram, Pinterest, Twitter…the list
is too vast for me. I still marvel at the invention of cell phones. My first flip
phone (favorite cell by far) cracked me up constantly. I always felt like I was
conversing with Captain Kirk. Since the MonS6ter is rather other-worldly, this is rather fitting.
makes us the perfect subject for research. Not research just on our disease but
the perfect researcher of our disease.
Therefore, MonSter Warriors need to read. It is our responsibility to the rest
of the world. WE are the experts on MS. Not one other person on the face of the
earth will ever know how we feel.
Yogi, mid-Eastern dietician, or clairvoyant who will ever truly now how we feel. Our fellow Warriors can sympathize and
encourage, but we only sincerely learn how to deal with MS through the experiences
and experimentation of others.
I hold medical professionals in high
respect and appreciative their consistency in searching for a cure. Living with
MS means constantly experimenting and the more options we have, the better.We had chased some of the same boys.
We had spent hundreds of hours haunting the same dives. Wa there a link to this
strange delimma we were in?
been yto read about this MonSter, Jamie was less studious. I would have read
for her had there been a more open means of literary support. All I could find
was technical manuals that spewed medical jargon and borng details that I really
didn’t want to understand.
these pages is just a little iceberg teaser. More and more people are sharing
their MS in helpful, inspirational, informative tomes that I admittedly love
to read. We are not alone in this nightmare and them more confidantes we collect
our world is just that much larger.
these pages is just a little iceberg teaser. More and more people are sharing
their MS in helpful, inspirational, informative tomes that I admittedly love to
read. We are not alone in this nightmare and the more confidantes we collect
our world is just that much larger.
that would be it. In misery we look for company, right? In this 21st
century of Star Trek technology we are capable of contacting thousand, millions
of like-minded individuals. Face Book, Instagram, Pinterest, Twitter…the list
is too vast for me. I still marvel at the invention of cell phones. My first flip
phone (favorite cell by far) cracked me up constantly. I always felt like I was
conversing with Captain Kirk. Since the MonS6ter is rather other-worldly, this is rather fitting.
makes us the perfect subject for research. Not research just on our disease but
the perfect researcher of our disease.
Therefore, MonSter Warriors need to read. It is our responsibility to the rest
of the world. WE are the experts on MS. Not one other person on the face of the
earth will ever know how we feel.
encourage, but we only sincerely learn how to deal with MS through the experiences
and experimentation of others.
respect and appreciative their consistency in searching for a cure. Living with
MS means constantly experimenting and the more options we have, the better.
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