It happened again this morning. That long walk home that started my adventures with multiple sclerosis.
Fifteen years ago as I strolled my baby on the uneven sidewalk through town, I realized something was horribly wrong. My right foot refused to obey my brain's message to lift.
This morning I was anxious to take in an early morning walk. Thanks to Ampyra, I have enjoyed this activity more and more, but this morning good ol' miracle drug was on vacation.
Only a few yard out of my front yard, I realized that I probably would not make it to my mother's flower garden for a planned "weeding". I needed to head home.
And, so I did that very thing.
And here I am. Complaining to you.
At least I can rest assured that the majority of you understand my frustration.
How can we explain to others when we ourselves do not understand this daily unpredictable crap associated with MS?
After doing some simple stretches to limber the ol' stiff muscles, I felt a little better, but still looked longingly from the living room window at the sunny morning. Guess I'll try again tomorrow.
For now I refuse to wallow in self-pity. This morning's walk attempt was nothing compared to that awful, awful morning fifteen years ago. I never would have imagine that story to become an award winning book. Here's a sneak peak at I Have MS. What's Your Super Power?, internationally recognized at the both the London and the Paris Book Festivals.
Chapter One: The Long Walk Home
Finally! The beginning of summer 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.
I stocked the 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.
I spread a thin 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.
We set out with 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.
An hour later 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.
Life couldn't 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.
And then, as with 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.
The sun was 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
I'll have a 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.
I remember 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.
At least the wheels on the stroller would help pull me in the right direction.
I stepped off that 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.
To this day I do 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.
Someone was 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.
It was as if my 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.
It wasn't as bad, 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.
I got some flak 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.
Upon registration 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.
I finally called a 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.
Eleven days later I returned home to continue my summer vacation.
I relearned how 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!
My real MS adventure began that summer. My first lesson was to find out what MS was and how long I had to live.
Well, that was 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.
Thanks for taking time to read about the day I was introduced to the MonSter.
When did you shake it's hand?