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Wednesday, August 27, 2014

"Love you. Thanks for all the goodies."

It's been a week since the memorial. It was two weeks ago when I last talked to her. I think I am ready to talk about it; but I will never be ready to accept it. Kind of counterproductive in the reality department, don't ya think?

One cannot die from multiple sclerosis. That's what they tell us, but I believe these words less and less. Ironically her last words to me were " Love you.Thanks for all the goodies!" My last words to her were "we don't do this." Real inspirational, huh? I didn't know what else to say to her. I didn't know this was  my last  opportunity to visit with her.

At the memorial service, her family did not wish for anyone besides the pastor to speak. I respect that decision and am actually glad for it. There were so many people there. We had to mourn in our own way. I need to talk about her now, though. She was my friend and little sister; related not in blood but in an age-old bond developed when I was dating her brother years ago. The romance collapsed, but the friendship remained. I became a second daughter in her family. When I went away to college her parents would drop her off to spend a weekend with me sometimes when they traveled out of state to visit their oldest son at his respective college. We had our own age appropriate friends but always managed to seek one another's approval before making life altering decisions. We held hands in church when the spirit moved us and when she wasn't accompanied by her most recent paramour. We stood up for one another at our first weddings.

We were diagnosed within a year of one another. I landed in the hospital for several days and spent an entire summer rebuilding myself. My students created a beautiful hand painted cane for me that was quickly set aside as unnecessary. She learned to maneuver a walker and then graduated to a wheelchair. She sought a variety of professional opinions and experimented with the absence of needles. I remained on my Beta Seron for eleven years before deciding that life was too short to feel so lousy and at the mercy of an experimental drug; I quit cold turkey. She could no longer always feed herself and no longer attended her son's baseball games. I stopped calling and visiting; at a loss for words and guilty that I could still walk on my own steam. I kept in contact through her family, but was not as readily available as I needed to be. Why did I separate myself from the one person who would understand and with which I shared so much?

And now, of course, it is too late. I am the lucky one, I have been told. I can still walk. I can take care of my family. I can still work and drive my car. I have been blessed.

Yes, I agree, even if I do not understand. I see what she went through. All that she had to endure and I hang my head in shame that I could not use one ounce of my blessings to help her fight this thing that "we do not do". I cannot share these thoughts with my family and I have not and will not disclose the details of her death with my son. husband, or even my own mother. It is too real. It is enough to make me want to pack it in, leave my job, head for the hills, and hide away for the remaining days of my own life. In the face of death, we should not be expected to spend our days doing anything short of enjoying our loved ones and living life "large".

I have been blessed. I had an incredible friend. And in her honor, I will do this thing.



Thursday, August 14, 2014

This is a sad, sad day.



When twelve year old Abigail Van Buren Masterson (yep, named after the infamous advice columnist) is told that she is going to attend the same school and live in the same town FOR-EVER, she is thrilled. This means that her BFF might actually take human form and she will no longer need to rely upon her diary to perform that duty. Wow and viola! She and her younger brother will have their own bedrooms and life might be normal. But, then she discovers that the reason for this magnificent life change is that her mother has an incurable disease.

This incurable disease is Multiple Sclerosis.

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.

Forty percent of all sales of my YA novel Abby will be donated to the National Multiple Sclerosis Society in honor of Jamie (Feltz) Riley. 

Thank you, Jamie, for being my friend.




This is a sad, sad day.









Tuesday, August 12, 2014

Y'know, there are no guarantees in life. That is not breaking news, but the reality of it just stinks. No one promises that we will grow old to see our children graduate, marry, procreate. There is no security in knowing that our friends will always be only a phone call away. Our favorite authors cannot be depended upon to roll out our favorite characters on a regular schedule nor can we depend on favored entertainers to perform for us. And summer cannot go on "just one more week."


Two weeks ago I could never imagine such a drastic change in my own life. When I discovered that one of my oldest (not chronologically; she's actually mush younger than I) friends was vacationing in the hospital for her third visit in a month, I immediately hit the highway in hopes of offering positive energy and words of encouragement. Jamie was diagnosed not long after I was, but with a much more emphatic announcement. I actually felt guilty visiting her, knowing that my MS had never reached the level that Jamie's achieved; And I have always been a straight A student. Jamie rapidly graduated to wheelchair status. A former gymnast, Jamie always fascinated me with her elegant physical abilities. Her beauty captured the hearts of many young fellows over the years and she has been blessed with two wonderful sons. Her MS journey, though, lead to conflicts that keeps her away from her son's own athletic performances and has imprisoned her in her own home. And now, after her third stay in the hospital with some silly infection and a severe round of dehydration, Hospice has been invited into her home to "make her more comfortable". I, as does her family, pray for a miracle.

In no way as personal or important to me, my need for a good laugh in the face of this sad news cannot be satisfied with the more recent reports of a death in the entertainment world. The most animated, entertaining man on earth succumbed to suicide yesterday. I needed to listen to Robin Williams. He was my balm when nothing else could lighten the darkness of depression. Ironically the reason for his death is a diagnosis of severe depression. How can the funniest man alive be depressed? It baffles, confuses, and angers me. It doesn't feel right to be angry at the deceased or down trodden, but I just can't help it. It is my sincere belief that individuals who take their life have no idea what effect their actions have on the rest of the world and I also truly believe that they have no right to force reactions upon others. Did Robin Williams actually believe that his life was not important to people who depended upon him for levity? did he view himself as useless to the human race? Did he realize what his death would do to his family and fans? Did he not know how much his existence is needed?

Jamie could use a good laugh right now.

Not many of you will see my next point as equally severe as illness and death, and it is not; but in the world of depression, it is "up there" for me. Yesterday, prior to hearing the RW news, I made my annual visit to the local ERC (Educational Resource Center) to acquire a new grade book for the new school year. I am not looking forward to going back to school this year and I am trying hard to find that first day of school feeling. After 33 years, it is not coming as willingly as it usually does. I just cannot get my optimistic vibes in gear, even with the purchase of new shoes and the promise of a rejuvenating  pre-school pedicure. It's just not coming.

I could use a good laugh right now.

Just needed to vent.

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Wednesday, August 6, 2014

Nasty, wicked bike!


I have fallen twice today. Both the same way, in the same room, and injuring the same body parts. The side of my right foot is bruised, swollen and sore. My left knee, still raw and skinned after falling off of my bicycle yesterday (yep, that innocent looking adult trike at the bottom of the page), is now bleeding anew and my elbows are throbbing. I am very, very weary of falling.

And I do not just fall, daintily to the ground. When I fall I get my money's worth. One minute I am standing just fine, with not a worry in the world...and in the next second I am propelled through space and am on my knees, my butt, my face, my back...wherever gravitational force takes me. It's as if there is some invisible magnet that draws me to the earth, sometimes in slow motion; often with the speed of sound. It is unpredictable, unnerving, humiliating, and frightening. I never know when it will happen or what my personal response will be.

Already NOT looking forward to returning to my teacher job this semster, my falling habit is another strike against my enthusiasm. I am not one of those teachers who hides behind her desk, ticking off busy work assignments to keep the students occupied while I do seat work. I have to move around and visit individual desks, demonstrate my points with dramatic arm movements, keep my students' eyes roaming the room instead of allowing their eyelids to snap shut in boredom. It is just not my style to be sedate.

And so...I am terrified of falling in front of them. I use my cane, but that doesn't always stop my fall. I have even been known to fall off of my chair, for no reason at all. I am paranoid about doing my hall duty between classes for fear of being trampled. Sometimes my feet just do not keep me stable.

I do NOT like to cry, especially in public or with my teenage son as a witness. He should not have to live with this vision of the quivering mass I become in these moments. But he is always the first to respond to the unexpected thud in the kitchen, on the stairs, or in the living room. He is attuned to his mother's physical weakness, and I know it scares him as much, if not more, than it does me. But, as I do I, he takes it in stride. Of course, he's the guy whose favorite childhood video was my instructional films concerningn self-injection. Go figure!

These are just a few of the frustrations that MS has forced upon me. I used to be such an adventurous soul. At one time I had great visions of sky diving, swimming with sharks, travelling the world solo, learning how to walk a tightrope...
Now I am just happy to make it home in one piece.



Who would imagine falling off of a fourwheeler?
 
 
So, after reading the information on the website below, I am encouraged that the next generation of MSers may see a more positive future. For me, I'll just concentrate on keeping my feet on the gorund and my legs turned in the right direction. Zip lining is not out of the question, though!

http://blog.synergyhealthconcepts.com/new-treatment/?utm_source=facebook&utm_medium=cpm&utm_campaign=MS+MS+MID&utm_content=2014-07-30+3+%2810%216016649393050%21qwaya%210%29&utm_term=F+20%2



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Friday, August 1, 2014

Finding the Neurologist for You

A French neurologist named Jean Martin Charcot was the first person that actually recognized Multiple Sclerosis as a disease in the year of 1868. That was probably a very forward thing to do, considering that as recently as the 1950's individuals were still being institutionalized for their inexplicable symptoms. I can only imagine the number of men and women who were condemned as witches during those days in Salem. (This actually sounds like a good research topic. Hmmm...)

I thank Jean Martin Charcot, though, for stepping up to the plate and announcing to the world that Multiple Sclerosis is a documented disease. For anyone who was aware of this proclamation at the time,  I am certain that their appreciation was strongly felt.

Unfortunately, even with medical documentation, MS is still ridiculed as a "catch-all" for all of the unexplained symptoms and actions associated with the mysteries of the condition. I am so excited to be seeing my original neurologist in a few weeks in hopes that he has more information to share. Dr. Robert Lewis was a mere intern when we first met. He was studying under the experts at Ruby Memorial Hospital in Morgantown, West Virginia, specializing in neurology, and, of course, a Mountaineer fan. I tell you this mostly because from the upper windows at this hospital one can enjoy a spectacular view of Milan Puscar Stadium, home of the WVU Mountaineers. That is not what honed my affections for Dr. Bob, though. He was young, enthusiastic, newly married, an expectant father, and originally from the southern part of West Virginia, my family's stomping grounds. And he cared...with ever inch of his being...about helping me work with my newly diagnosed disease. In my mind, Dr. Robert Lewis was the closest thing, in my time of need, to God. (My eyes are flooded with tears just thinking about it.)

As his first MS patient, I was definitely a big part of his studies, but he did not once treat me as a lab experiment. His bed side manner got me through my first, and second, spinal tap. He reassured me, but did not not pamper me in that demoralizing way that some medical professionals see as comfort. We talked about my six month old son and his own new born. We even kind of giggled about our name choices. I named my son Boone in honor of my family's home county. He named his son Guido. Why? I still do not know. A very mob name for a sweet, innocent southern boy, don't you think? Dr. Bob was there for me when I needed him most. He moved on in his studies and his practice, leaving me with a confidence that I could "do this thing".

And for many years I did; but I always wondered about the guy who so lovingly had taken my spinal fluid virginity. And, after more than a decade, I have found him. I imagine the two of us, arms reaching and flowers floating in the air around us, falling into one anothers' arms. I will declare my undying love for him, as he gently strokes my tear sodden cheek and inquires about my incontinence.

SCREECH!

I do not even know if he will truly remember me, but there is no doubt that he has made a definitive impact on my life. There have been an assortment of neurologists and specialists in my life since my relationship with Dr. Bob, but none can compare with my feelings toward this fellow. It's that "first love" thing to some degree and the fact that his youthful enthusiasm was contagious. I can relate, as I am certain we all can. In the first years of being a classroom teacher, I know I went overboard to be the very best teacher I could be. I am not saying that the years lessen this need to succeed, but I know that we all settle into our jobs and sometimes become a bit lax in our approach. I will not criticize Dr. Bob for not remembering me, but I have to admit that I probably will feel some disappointment. (A GREAT deal of disappointment. I mean, after all we meant to one another...)

The point of all of this (and there really is a point) is that it is absolutely imperative that we find a neurologist who makes us feels worthy of continuing on with life, MS or not. Where Dr. Bob left me in order  to continue his studies and advance his career, he also did so because that was the next chapter in his life; and he left me with a confidence that I, too, could handle my next chapter. That euphoria lasted a while, until I again needed that reassurance that I could "do this thing". And, then...I became a number. I continuously spouted out data that was already recorded in the medical files; and I self-diagnosed and treated my own symptoms. I am not saying that after Dr. Bob no one cared, but that "home visit" feel was gone. And thank goodness I have the where-withal to research my own disease! It is a little frightening when I am reporting to my doctors the best way to treat my condition. My teacher's pay check certainly does not reflect the income that some (most) of these professionals bring home.

So, 'nuff said. Dr. Bob is located a distance from me now, but it is worth it to me to take a day off from work and travel down interstate 79 to find him. (And, no, I am NOT telling you where he is. I saw him first! Besides, that is what Goggle is for.) At this stage in the game, I prefer taking this time out of my day in order to revisit a piece of mind that has since been removed from my life. Maybe I will be disappointed; maybe I will continue to self-diagnose; maybe Dr. Bob no longer concentrates on MS related studies; maybe Guido is the Godfather of Cable County.  I am excited to find out. And I am excited that Jean Martin Charcot made all of this possible.


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Love and Light,
Lisa