Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Disability, Ability, Physiatrists, and Determination
Sounds like such a stupid question. Me, the one living with Multiple Sclerosis for the last nearly 13 years, but almost every morning I wake up thinking, “Just give me a second. I’ll jump out of bed and get moving.” Silly right? But, my dreams play a small part in this deluded thought. Stupid dreams! I still walk in them, how deceptive and unfair is that?
Since I met Dan, I have never walked. But in my dreams, we often walk together into crazy, nonsensical adventure all of the time – hey, dreams don’t have to, and trust me, mine don’t, make sense. And I guess it’s good that I still walk in them because it reminds me what I’m fighting for. I believe, I HAVE to believe, I will walk again!
But am I really disabled?
You’d think, the wheelchair or the reality I can no longer roll over in bed, or get to toilet without help might tell me. But, un-uh. Still don’t see myself that way. As for those little blue wheelchair signs designating handicapped parking spots and restrooms, those are just signs. That’s not me!
This lack of acceptance, i.e. denial, might explain my constant frustration and frequent tearful outbursts when no one is looking. But those are mine to live with and deal with, and pity is certainly not acceptable or being asked for.
But again I ask, am I really disabled?
Recently, I was asked by the office of Student Disability Services to tell the Facilities Management staff at Central Michigan University how they could improve the handicap accessibility of their buildings. Guess that should’ve been a clue, but truly, it was the 2 women in wheelchairs I met that night that made me doubt the genuineness of my disability.
They were also providing the FM staff valuable feedback on building improvements. Only they were sharing stories of cruising their power chairs around campus, or through town, the daily difficulties of riding public transportation, or having to replace worn out wheels.
I couldn’t relate. After all, I ride in my van and can’t imagine driving my chair enough to wear out my wheel’s tread. Really, I’m only kind of disabled.
But when they started talking about getting stuck in the snow or having slippery wheels from said snow and about hard to open power assist doors. I started to relate.
Then the topic turned to the best handicap bathrooms on campus. And when we all knowingly exclaimed, “
Library. Definitely the library.” It started to sink in. I was with my peers.
Sure my MS support group is full of people who understand this disease, but none of our regulars use a wheelchair. And Dan, he provides tremendous support and understanding. But it was in that room; with those women in wheelchairs that it began to be okay.
Yes, I really am disabled. And after not walking for the past 8 years, you are probably thinking, “Well duh! Finally.” But for the first time, I felt comfortable enough to say, “I am disabled.” (of course with the caveat, ”I make disabled look good!”)
And maybe now, I’ll even be okay with photos of me in my chair. Um … probably not. Call me vain, but I’m thinking I’ll still probably crop it out.
She wasn’t shy. Nor intimidated. She walked up to me and gingerly picked up my cane which was leaning against the table.
“Don’t touch that” her mother said.
It’s OK” I replied. “You can play with it” I said to the little girl.
From that moment on, my new friend didn’t leave my side.
Her name was Airyanna. (I thought she said “Ariel”, like the mermaid)
She was three-years old. Cute as a button and wise beyond her years.
I showed Airy a couple of very lame tricks with my cane (I admit my repertoire is rather weak!) and she clapped & squealed with approval.
“I try” she said. And she performed my “tricks” to perfection.
"I applauded for her…while thinking I really need to work on some new tricks.
Noticing her socks adorned with frogs, I said “I like your socks.
Can you jump like a frog?” She squatted like a frog and jumped several times.
Then she quickly turned to me and said “Your turn!”
“Oh, I can’t…”
“Yes you can.”
“No I ca…”
“Yes you can. Try it.”
So I got down like a frog and made several “leaps,” all without losing my balance or spasticity tightening my legs like a department store mannequin. Airy clapped with approval and said “See I told you you could do it.”
The kid was right. Three-year old luck I figured.
Next, she hooked my cane around a chair and jumped over it.
“Your turn” she said.
“No, I can’t” I said.
“Yes you can.”
“No I can’t. I have MS—a degenerative disease of the nervous syste…” She interrupted “Yes you can. Try it.”
She would hear
nothing of my explanation of MS.
Having a vertical leap that can be measured in millimeters, I picked up my right leg and threw it over the cane. Then I dragged my left foot over to complete my “jump.”
Airy clapped. “See I told you you could do it” she exclaimed.
Isn’t it medication time I thought to myself?
I asked her to pass my cane as I wanted to walk and throw a dirty plate into the garbage bin which was about 10 feet away.
“You don’t need this” she said referring to my walking stick.
“Yes I do–I can’t walk witho….”
“Yes you can.”
“No, remember my MS? The chronic disease? Myelin sheath…”
“Yes you can. Try.”
So, slowly but surely. One foot in front of the other. My arms out like I was walking the high wire, I made my way to the trash can. Again, Airy applauded. “See, I told you!”
Yep she did. She told me I could do lots of things that I thought this friggin disease had stolen from me. Who would have known there was no need to consult medical specialists with their wall full of diplomas. No need to take pills with names I couldn’t pronounce. Or undergo examinations & treatments costing thousands of dollars.
I only needed to talk to my new little friend, Airyanna.
Thanks kid for giving me some much needed confidence and restoring a little faith & dignity in myself. The short time we shared together was just a couple of hours, but the impact you made on me will stay with me forever.
Class dismissed.
I get it. I do. You were diagnosed with MS and you are scared. You don't want to "end up in a wheelchair." (There are worse things.) You were just diagnosed in the last couple of years, maybe it was over 10 and you were doing just fine, thank you, but now your MS is acting up and you are searching for comfort, answers, help. Really, I feel for you. I've been there. Before the Internet, before cell phones and email, I've been there. My blog is meant to help you, comfort you, maybe answer a few questions. I also hope to show anyone who stops by that having MS doesn't define who you are. Life goes on.
That said, if you have been following my blog (and of course you have, AND of course you remember every story I've told...
hahaha) then you know I have, after 20 years post-
DX, claimed the title of secondary progressive MS. My neurologist, a few years ago, told me if I didn't go on
Novantrone, that I would, "dwindle." (such a cute word, I still say I'm going to name my next dog that, "Here, Dwindle!")
My plan is to live my life with the support of a team of doctors. The draft seems never ending. I DO have my team captain, which is huge and I thank my lucky self-luminous gaseous spheroidal celestial bodies of great mass which produce energy by means of nuclear fusion reactions (stars) every day! But doctors retire, move away, my MS doctor jumped ship in 2004 and I my search has been ongoing for a replacement.
Now, I don't have to tell you that your MS Doc will be one of the most valuable relationships you can have., whether you were recently
DX or were
DX 30 years ago. Depending on your age, you will probably die with MS. (Not FROM it, but WITH it.) Yes, I said it and I'm sorry if no one else has told you that. But please, this is not necessarily a bad thing. IF you get on with life. Your MS Dr. should be the one to help you do that. Don't settle for anything less.
Sooo, taking my own advice, and I must since I live by "I never expect more of anyone than I do of myself," I have gone through some, er, how can I say this in a nice way, dumb ass neurologists. The most recent one was on my short list until she deserted me in an ICU, HER hospital's ICU, for days, while I was dealing with some virus or infection (one of the complications that CAN kill you
courtesy of MS ) and the first time I saw her after my adventure to Hell and back, she had NO idea that I had been in HER ICU. (Had she returned my calls,
messages or emails....) That Dr. fell off the list. Seattle is a big city, but how many neurologists can I dump before they see Diane coming and run the other way? (And FYI, doctors are notorious gossips!)
Sooo, my yearly
appt. was approaching, I basically endure them, shove plastic brains under my shirt or act like a fool to try and get some laughs out of a boring and
unnecessary meeting. I mean, I'm
SPMS, there are no BIG
PHARMA drugs for me, no surgeries or magic exercises. I have my chair, my walkers and canes, all the material needs are met. Only
myelin repair can help me now---by way of a doctor appointment. You dig?
Now I was called out on this, I mean it was a breaking! (Yes, I'm showing my age, but at least I'm in the 90s now!) A woman, my age,
DX 20 years like me, went ballistic when, after she told me I should go to her gay/MS support group, I said (and I SWEAR this was all I said!), "Why?"
Amazing how many times that small word has gotten me in such big trouble! (And, no, I am NEVER going to stop asking.)
This woman told me she wanted every new MS drug that came out (I couldn't believe she actually said it.) and "I am not going to quit fighting!" Game on. To which I replied with indignity, "You think I don't fight?" (My voice was only
slightly raised.) After that she backed off, but became cold and obviously steaming, which led to a total melt-down against the passing by maintenance man and me. It was ugly. He and I were stunned, she stormed off, returned after about 15 minutes and apologized, he and I were like, "No problem. Difficult times right after you move in here, blah blah," and she split again in her scooter. He and I never spoke of it again.
But I hear YOU, some of my readers, yelling the same thing at me, thinking the same thing when I rant about the snake-oil drug dealers of MS Land. But, hear this: I do NOT discount you.
I don't have answers, mostly my own piecing together of MS information, I am fascinated by the whole journey we are on together. There are so many unknowns, so many possibilities, and this is why I consider MS an adventure. While I feel confident in my decisions, I could be completely wrong---I simply require proof that I am wrong.
Still reading? Bless you. Back to the point of this War and Peace with MS: My neurologist had been trying to (and this is all my perception) dump me off to another in a long line of worthless and border-insane
physiatrists (a
physiatrist: they are
MDs who specialize in rehab and figuring out what your MS body could use help with. Some people with MS only have these as their MS Doc and they THINK they are neurologists---Nope, just
MDs...if I had a dime for every person with MS I had to explain that to, well, I would be HALF as rich as the dimes from all those who never believed me!) , so I had no intention of seeing another one.
Two days, then again one day before my MS yearly chit-chat, I called to confirm the time. (A must do since my van ride there depends on accuracy.) Both calls confirmed A-OK. I had set the
appt. TWO MONTHS ago. 4pm the day before
appt. I get a call changing my time by TWO HOURS and MY DOCTOR! "Dr. XXX is unavailable." (sure) I argued the time and we debated the time until I got my same time back but with new Dr.; I later called back to confirm it was a neurologist and how to spell the name. Was this fate? Maybe this would be my NEW team member and I could dump Dr. XXX!! Drat! I wanted to dump her first. She never liked me after I called her out about taking money from a drug company to speak about their drug. (Silly, girl. I assured her not to feel bad, "You all do it."
Morning of
appt., oh, remember how DR. XXX wasn't available? I called right back that day and after saying I was a new patient, yep, she was available. They also had NO record of me ever having an
appt. with Dr. XXX---
hahahaha, this was planned far in advance.
ANYHOO, I start thinking about the name of the new neurologist and yep, it was that
physiatrist who Dr. XXX had been pushing. You know what I hate? Lies. Attempts to manipulate me because I am deemed too dumb, or unable to fight back. BECAUSE---if they do it to me, then they will do it to my 103 year old aunt in a heartbeat. You know?
Okay, I choose to make this a good day, a good experience---I am in Fate's hands.
After a mix-up of my records (they had no idea what MEDICINES I was on! Good grief. "I am just a Temp." Fair enough. I finally got to meet Dr.
ZZ "Everyone loves Dr.
ZZ" That is another way of saying, "If YOU don't like her then something is wrong with you." Hold onto your Fez, I
WUV HER! I have a new team member! Hooray! Now let me tell you why.
She was honest. She did not hesitate, to find the legally correct answers. She had (sit down) READ MY REPORTS! She even brought up my radial nerve palsy from 2005! She could finish my sentences, CORRECTLY. She agreed with me about all the hottest new and improved MS
blugs. er, drugs. She looked me in the eye. Oh, man, my dream come true! She GETS it. And after I told her how I knew what Dr. XXX was doing and why (Because neurologists diagnose MS, they get the
MRIs and try drugs on you; you MUST start there, but where I am now---all that is done. Unless a cure or
myelin repair comes along, a neurologist has better things to do. That is the reality.) and Dr
ZZ agreed with me and apologized that it wasn't handled better.
Also, she is so damn CUTE! She is disarming, and I am not easily disarmed. ("I will be bullet proof..." a song on the charts.)
Sigh. I was so relieved. Then! The best yet! I
described my exercise program, my walking program, my goals, and she said and I quote, "You are doing all the right things." She was "impressed" with how well I was doing after 20yrs
DX (and actually 40yrs my first symptoms began) and YEA! I am so empowered now and full speed ahead! No more quilt, no more doubts. I'm living with MS and moving forward.
A parallel world,
that is where I sometimes feel
MS has sent me.
Surely there can’t be
people who wake up knowing
it’s easy to move.
Was I one of those
who blithely took for granted
running down the stairs?
In 1914 Ernest Shackleton posted a notice “Looking for willing and able bodied men to go on a perilous journey from which they may never return” Over a 1000 applied.
In 2002 I answered a similar notice. I was one of a handful of ‘applicants’ and so began my amazing journey to climb the highest mountain on each of the seven continents. I wasn’t a climber. I wasn’t an adventurer. I had never been higher than a few gentle mountains that make up part of the White Mountains of New Hampshire. I went with my father, I think I was ten.
But the call to attempt to go on a perilous journey of which I knew nothing but wanted to learn was too great and so with no experience in 2002 I went to Alaska to climb Denali. I did return but I was humbled. And thus began my new life…..
My journey was further complicated by the fact that unlike Shackleton’s able-bodied men, in 1998 I had been diagnosed with MS but that above all else was my very personal reason for attempting this mission. I wanted to see if I could climb with and for MS.
Mountaineering is unlike any other sport. It is a very solitary sport and a team effort both at once. The challenge is met by bringing together a clear, responsible decision as to what is the smart thing to do. The ego must be totally eliminated and the glory or self-adulation to reach the summit must be weighed by the total cost of what it takes to get there. As a friend so eloquently put it, “This is not a missed shot in a tennis game, there are no do overs. The ramifications of a single decision are enormous and the responsibility lies totally on and within the individual climber.” A poor decision not only affects the individual climber but also puts great risk on the people who must now give their own lives in order to save that person. A summit will only be recalled or glorified for a finite period of time. A poor decision on the way to that summit will carry a lifetime of regrets or take that life altogether.
It is all about individual choice. Reaching one’s personal boundary and recognizing that we have a responsibility to ourselves, those we care about, the people we are climbing with and to our personal mission. The hardest choice I have had to face in the 12 years I have been living with MS was to turn back from a summit attempt on Everest… twice. I have had to recognize that on Everest I reached my boundary- sustained life above 17,000 feet, where the air is painfully thin and took my body to a place where it couldn’t function with Multiple Sclerosis. My MS could not tolerate the lack of oxygen to the brain and the enormous daily temperature fluctuations on the mountain. Everyday while others on my team grew stronger I was getting weaker. I noticed new symptoms I had not had before as well as a severe increase of those I have lived with for years.
Sir Ernest Shackleton’s perilous adventure to Antarctica could have ended very differently then it did. Although the expedition failed because he did not reach the south pole, Shackleton triumphed over enormous odds to bring all 28 men safely home.
My mission has been to educate, motivate and encourage those facing MS that they too have the ability to take an amazing journey with their disease. They have the personal responsibility to get on a medication to make themselves the best they can possibly be to face the challenges of the mountain ahead. Just like an individual climber facing insurmountable odds, discomfort, fear, trepidations and perseverance, we with MS face this mountain every day. But only within ourselves do we hold the individual decision to push back, reach and recognize our limitations, challenge our hearts, minds and spirit and live a fulfilling life with and for MS. It is not an easy mission but I personally know it is fate that brought us here. Our spirit that will guide us through. And the rewards are like no other.
Like Sir Ernest Shackleton my mission ended very differently than I had expected. But I did not fail. I have attempted Everest twice. I took MS to the highest it would allow me to go. As the medical staff at base camp have documented, the bar has been set. I am a mountaineer, an adventurer, an explorer. And I’m not done yet.
Wendy, Safely back at Everest Base Camp
Climb On!
This concludes the 63rd edition of the
Carnival.
The next
Carnival of MS Bloggers will be hosted here on June 3, 2010. 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, June 1, 2010.
Thank you.
