Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Inspiration, Humor, Good News, and Immortality
I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very
mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.
I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.
On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?
When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.
During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and Bill and I had both lost our jobs— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.
It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)
Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.
I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!
Ah, the humor of our MS Bloggers. It pleases the soul and lifts the spirit. Sometimes it even causes bursts of laughter.
Joan caused such a reaction recently with her very simple post...
One photo.
One title.
One cute chick.
Joan of
A Short in the Cord says,
"I Guess They Saw Me Coming!"
I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.
Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.
The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.
I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.
It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.
On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.
Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.
The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.
By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.
I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.
When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.
I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.
*******
At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.
I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.
The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.
Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.
These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.
As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.
I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...
This concludes the 45th edition of the
Carnival.
The next
Carnival of MS Bloggers will be hosted here on October 8, 2009. Please remember to submit a post (via
email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 6, 2009.
Thank you.
Biogen Idec Inc. has essentially received a 13-year patent extension on its biggest moneymaker, the multiple sclerosis drug 
