Hello Chin...its been awhile

Last May I had the dreaded experience of heading to the DMV for renewing my driver's license.  You remember the old days when you had to renew it every three years or so - much more of a hassle but at least you didn't have to relinquish your 8 year younger self as I was about to do - and I wasn't to happy about it!  I also remember the kinder years of the DMV before they were strapped with budget cuts and a minimal staff, the jovial camera man who would actually re-take your picture if you didn't like it - those days are long over - in fact while I was there I got a notice that soon they would be taking your picture, but sending all the info to California and then you would get your license in the mail - no more waiting in vain on the plastic chairs with everyone else's anticipation of the most likely awful photo.  Everyone, including myself, tries to play it cool; so you saunter up when you name is called pretending that you don't care how it turned out.  Some of the most laissez faire - resist the immediate temptation to steal an obvious glance while in front of the gallery, patiently waiting until they are alone in their car.

I took my sister for her driver's test - I'm five years older - and I still can't decide if my parents thought she would be calmer with me or they didn't want to be there if she didn't pass! Nonetheless, I swear her smile was bigger and more proud when she picked up that picture than it was when she passed the test.   While she was out on the road test, I had renewed my license and while it wasn't the worst pic, it certainly wasn't great.  What was so entertaining about her photo was her pride in its faboulousness!  When we got home, my mom and I kept stealing glances as she held out the picture like a trophy - but in fact it was - a good DMV picture should come with at least a medal.

So last May, I was relieved that they no longer make you hand over your old ID, because I still use it ( I don't think the cashier at Nordstrom is looking at the expiration date) - not only because I am eight years younger in it, and its a much better picture - but I have a jaw line and a chin!  I've never had a prominent chin, so taking that less than stellar jaw line and adding a bunch of swollen congested anterior lymph chains, and there goes the chin.  So when I went and picked up that ID, that's all I saw,  this double chin puffiness quality to my neck - and every time I pick it out of my wallet it irritates me -

Last October when I returned from Phoenix, a number of people commented that I looked a bit different - and I did - much of the swelling had decreased.  But this trip it has gotten worse as my body works harder to eliminate these infections.  This week all my treatments were aimed at improving the lymph flow, and it seems to have worked.  Last night after about 6pm I was really in rough shape.  I was so fatigued I had trouble swallowing despite being so hungry.  When I get that tired, its like all autonomic functions are no longer automatic - so three times during dinner last night I was forced to spit out my food when the act of swallowing wasn't coming naturally.  After I finished, I climbed into bed and it felt like a super powered magnet - pulling all of my limbs downward, making it difficult to move in any direction.  After about an hour of silence and being perfectly still, a little bit of life began to return.  My boyfriend came in the room to see if I wanted to watch Blue Bloods, I felt good enough to sit up in bed and watch an hour of TV, happy in the normalcy it gave.  After the show, I forced myself up to get ready for bed, and as I caught a glance of myself in the mirror I did a double take - no way - I could clearly see my left jaw line.  I can not explain what a sense of joy that brought, not only because the left side of my face looked like I just got a little nip and tuck - but because it meant progress -

I don't know how long my newly slender left side will hang around - I am guessing it may cycle in and out of swollen and not - but for the first time in many moons - my chin was back!  And let me tell you, if this holds, the first thing I am doing when I get home is heading to the DMV!

First Impressions

I've been craving apples lately - when I was little I have fond memories of being on a blanket in the side yard of my cousins house, playing with Barbies and picking the green apples from their tree - with the white plastic salt shaker never far from reach.  I miss apples.  But more than missing apples I miss the ease of going out to dinner and not worrying about what ends up on my plate.  It seems just as I have gotten this fatigue improving, these food allergies have come crashing down, and once again limited my freedoms - somedays it's like wearing a house arrest monitor without the sore ankle.  And just as my pity party was gaining steam, bring out the party hats and noise blowers - a memory flashed to the forefront of my brain and it snapped me out of it.  The truth is I can still go out to eat, I just often need to eat before.  I can still move freely, though often stiffly - and there is hope i will continue to improve...

The memory that flashed was my junior year of high school.  I was doing the rounds figuring out what colleges to apply to, so my parents and I were attending a Boston College informational meeting at Turner Hall in downtown Milwaukee.  It was a cocktailesque meet and greet with Boston College alums.  While there,  we ran into a partner from my uncle's law firm,  (and I don't know why I remember) but I am pretty sure he had a red sweater on - a subtle shout out to his UW-Wisconsin alma mater where he still held a track record.  He was attending with his younger brother (I believe Oliver) and I recall being a bit jealous because it seemed awfully cool to have a hip older brother showing you the ropes rather than your parents!  More likely it made an impression because that's just how Jeff Kaufman was - he was a person that without much fuss could make a lasting impression.  The type of person that recognizes the importance of eye contact and can make you nervous because you realize someone is actually listening to what you are saying.  That was over 20 years ago and though the specific details of memory may be blurred this first impression was forever embedded with a lasting imprint on my mind - nothing special about the event, or even the memory, but something was special about the person - little did my adolescent brain know how monumental special he was.

Shortly after that initial meeting,  Jeff was diagnosed with ALS - Lou Gehrig's Disease.  I faintly remember the whispers of something being terribly wrong with my Uncle's partner and dear friend - the initial doctor appointments ruling out various reasons why Jeff had difficulty walking up the court house steps - the unexplained falling - slowly these whispers gained volume as the diagnosis was cemented and the daunting new realty the Kaufman Family would soon have to face - the defining line of before and after.

I only saw Jeff, his wife Jan and their family a few times over the next 20 years, all at fundraising events for ALS.  I remember the first one we attended while Jeff was still only showing minor effects of this terminal illness.   A fundraiser at Miller Park before a Brewer's Game.  There were tents and food, a jovial atmosphere yet I can still feel the intimidation I carried, staying close to my cousins, not wanting to lock eyes with any of those attending that were prisoners of ALS.  Those individuals trapped in bodies that had been ravaged by this illness, knowing their mind was perfectly intact - it scared me - I didn't know how to act.  It terrified me that this illness existed in real life - no longer something I may read about - the torment of this illness was right in front of me, and I couldn't reconcile seeing Jeff from a far and knowing this was his most certain fate.  How, how does one go on?

The last time I saw Jeff was a number of years ago at the yearly ALS Evening of Hope Gala - I'm sure I said hello, thinking back I should have told him what an impression he had made on a 15 year old girl many years ago - that dashing dark haired red sweater wearing uncle - but I probably just said hello, and made small talk about what a great event it was; my lips moving while my brain was having a separate conversation chastising myself of how lame this conversation was - but that was the cruel reality of ALS - unless you know someone well - a quick two way conversation is not possible.  So, the benign one way pleasantries of a not so pleasant reality was what sufficed.  And I walked away feeling empty - knowing I had done my best, but well aware of the reality of a forced normalcy that Jeff had to endure, being helpless to verbally respond.

Jeff, his wife Jan, his family and close friends are heroes of optimism - heroes of support and perseverance - and I have been so blessed to be sprinkled throughout my lifetime with these amazing examples of strength and love- I always meant to write a note to Jeff and Jan - but never quite knew what to say - just as I have heard others mention to me - and how sorry I am I didn't - its not in what you say - its in taking the time and effort to say it.

Jeff waged a historic battle against ALS - he had that "je ne sais quoi" presence about him before and after - and that is what I saw and felt all those years ago at Turner Hall - when you are in the presence of someone exceptional - it doesn't matter if they are doing something exceptional at the moment - its that sixth sense of what they are capable of - Jeff was monumentally capable in spite of ALS.

As I went to sleep, my pity party quickly disolved with me thinking - who the hell cares if I can't eat apples - I can go to bed with the hope and reality that tomorrow can be better.  Something currently only a dream for those diagnosed with Lou Gehrig's Disease.

Life for anyone is a balancing act between recognizing your blessings and honoring your misfortunes.   Between giving respect to your personal experience without loosing sight of those with far greater burdens - the following copies of Jeff's article from Newsweek and links to his Obituary are re-printed with blessing from Jan Kaufman - Thank you.  May your family continue to know what an amazing example of love, hope and integrity you have shown to so many - and may your endless efforts for a cure be realized in our lifetime.

The following are two links, one from the Milwaukee Journal Sentinel and one from Jeff's law firm, I wanted to include the links rather than copy, because they include photographs -
Jeff Kaufman Tribute
Milwaukee Journal Sentinel


And here is Jeff's Newsweek Article, which I would be remiss not to acknowledge that Jeff did not have the luxury of typing this - it was painstakingly completed with his special computer while using his eye movements - Exceptional.

From Newsweek Magazine - September 10, 1995
Digging Your Own Tunnel - Jeffrey Kaufman

Every now and then during your lifetime you read or see or hear something that so exemplifies your existence. or a part of it, that it's almost painful I recently had such an experience while watching "The Shawshank Redemption," a movie about the effects of life-term imprisonment on hope and the human spirit. It's also a good metaphor for my life with Lou Gehrig's disease (or ALS).

I have heard it said that ALS is like being a prisoner trapped in your own body. I have always thought that this is an oversimplification. By providing an in-depth look into the experiences and psyches of various prisoners, this movie took the metaphor to its proper depth for me.

The story begins with the main protagonist, Andy, being sentenced to two life terms for double murder. On his first night in prison, he is faced with the enormity of his situation. This scene evoked my memories of receiving the sentence without hope: a life with ever-increasing disability and death within three years. I remember lying alone in that hospital room with little hope or sense of future. The enormity of my nightmare hit me as I thought about my wife and kids, money, my job, and my kids some more. I never thought about myself, not because I'm unselfish, but because I'd written myself off. I prayed out loud for the first time since I was small, asking for a reprieve so that I might see and help my young kids grow up.

Like Andy, my first two years were the roughest. He was regularly beaten and forced to compromise. In my case, I was constantly fighting--with myself and sometimes with others, as the disease continued its relentless violation of my once dependable body. As I watched the film, I remembered the stitches, head bangings, cuts, bruises. torn muscles and strained ligaments that resulted from my efforts to maintain normalcy. I recalled the frustration that came with each grudging compromise: walks and the exercise bike instead of runs and swimming; leg braces: no driving; working at home: wheelchair. I remembered the depression that came when I was forced to ask for help with my progressive loss of freedom.

The movie illustrates how Andy's reaction to the loss of freedom is different from most of the lifers'. Most of the lifers simply surrender after a while. Andy finds ways to assert his status as a thinking, functioning human being despite the limits of prison life. He establishes his worth to others as an advocate, financial manager and librarian. He has long-term projects, a chess set and a tunnel that takes him 19 years to dig. He never gives in. He finds ways to grab moments of normalcy, like playing music and drinking a beer. Andy's ability to affect the lives of fellow inmates is most important to him--he can cause things to happen and make people react. Andy talks about hope making a man free. His philosophy is, "You can get busy living or get busy dying."

I thought about my reaction to imprisonment and recognized that I have both an Andy and the other type within me constantly doing battle. The daily opportunities to surrender to the isolation of physical limitation. The temptations to give up something else. And how each day brings chances to participate in life, to fight against the forces that imprison me, to dig my own tunnel. It's easier to withdraw to my cell. As time advances and the disease progresses, everything gets harder, not only for me but for everyone around me. It is more difficult to affect the lives of others in a positive way. The walls close in. I become more of a spectator in order to ease up on the people around me-and on myself. I wonder if I could return to normalcy if my tunnel's ever finished; if I'm strong enough to sustain the effort involved in coming back; if I'm too comfortable with my isolation.

I became more convinced that death would be easier, but I've found reasons to live. I know that without my children and without the hope medical research offers, it would be very easy to give in. Andy makes his own hope. I have mine given to me.

I rely on images from my life on the outside for the motivation to "get busy living." I can see and feel myself doing things like holding my children, playing with them, eating certain foods. The movie echoes these reflections. I thought of how much I resent the necessity of asking when I need a shower. food, the bathroom, to scratch an itch or change channels. I've learned to ignore many of these things to avoid asking for help.

The movie's visual images were especially evocative. There's a scene where inmates, working on a roof, rest in the warm sun, drinking beer. I recall the great feeling that came from finishing work and resting with a beer on a hot day. There is a shot of Andy, recently free, in the rain, reveling in the interaction with God's natural forces. I took a lot of pleasure from running, playing ball, standing in a rainstorm. Quite a contrast to now, when I can't brush away a drop of water from my eye or hold my head up.

Another image from the movie is of a freed man walking along a country road, farm fields on either side, the sun casting a golden haze over everything. Having spent much of my youth in rural areas, I felt as if I was seeing country roads that I'd enjoyed as a free man. My youth came flooding back. Making hay, working road construction, riding horses and motorcycles, swimming, just sitting. I thought how desperately I want to have the pleasure of walking again.

What really struck me was Andy's dream that motivated his tunnel-digging. He envisions life in a small fishing town in Mexico. Warm sun and water, cool breezes, cottages and cafes lining the beach, seafood, snorkeling, deep-sea fishing. I knew the place exactly. I had been there on my most memorable vacation, nine months before I was diagnosed. I was experiencing symptoms, but nothing that stopped me from doing anything I wanted to. It was the last time I would feel that freedom. In the six years that have passed since that vacation, its memory continues to provide a picture of the pleasures life offers to free men.

Images may fade. As does the motivation. However, life can replenish these things. Sometimes it takes something like this movie to remind me to get busy living. Hope can live for as long as we're willing to dig. Even for 19 years.

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happiness

I had never struggled with Happiness prior to this illness.  Its not to say I was previously living in the state of a perpetual musical number with birds chirping and butterflies dancing - I had a bell shaped curve range of emotions like anyone else - two standard deviations in either direction you could find plenty that would not fall under the "happy" category - but in general I didn't know what it felt like to struggle back to the middle.  The first two years of this illness were so wrapped up in confusion and fighting to hang on I didn't have time for much emotion either way.  But as time has passed I have discovered what it feels like to fight for your happiness.

Today started off pretty shaky - but after my doctor appointment something lifted, and a bit of that old set point quietly slipped in - and like the first time you get glasses and you can't believe how clear everything looks - that's what it feels like when inexplicably the effort to just be is lifted.  Your surroundings become crisper and more defined, your feet feel a bit firmer planted to the ground and you no longer have the weight of getting by strapped to your back.  And when all that lifts, I take it in.  I never take it for granted, I don't know if it will hang around for an hour or two or even if I am lucky an entire day - but Sophie and I headed out for a brief walk - and wouldn't you know the birds were chirping -

HOLY MOLY i have cfs!

So that statement might sound a bit odd - considering i write a blog titled Chronic Fatigue Chronic Hope - but that is the caveat about this illness - it takes a long time for it to sink in - that this isn't something you kind of have - and i think that's how i have always looked at it - I kind of have this thing - its not well defined..it will be resolved sooooon... etc etc...and despite being in the medical field i decided to take a back seat and be a patient for awhile - giving in to trust.  In the beginning i was so tired of fighting doctors and their old ways of defining this illness - when i found the one that finally got it - i just let go for awhile.  An example, last September when i went for my annual OBGYN appointment my former doctor - when she asked me about exercise and i was really excited since i was up to about 25 minutes of walking - she told me at my age i really need to hit 45 minutes to get a maximum heart rate - i repeated - you do know i have chronic fatigue?  And she still went into the benefits of aerobic exercise.

I really don't expect every doctor to know everything - but i do expect people to admit when they are not a specialist in a field - or be curious to learn more.  In my irritation i would like to send her all the great research from Sue Jackson's posts - but i am trying to live more zen!  When reading these articles i realized i intuitively did many of the suggestions - for example using a chair.  Often when i get up and am trying to make breakfast or other meals i need to grab a stool to sit on - I also have trouble emptying the dishwasher - but it is a lot of bending and standing - constantly changing your blood pressure.  I have extremely low blood pressure - normally around 90-100/60-70 - and most people when taking it comment how great that is - what they fail to put together i also may have a resting heart rate while seated anywhere from 85 -90 beats per minute - the two don't go together.  So it takes that much heart pressure for me to maintain a minimal blood pressure.

I have always known this, but once again, this illness often forces you to believe the unbelievable - so my Mr, Big swim from the day before was a bit overzealous - its just so hard to not push when you feel good - my brain telling me you can't be sick - look you are swimming today - then the crash sets in the next day.  I think I will get myself a heart monitor - just for information sake - and to help chart progress - the other articles do a great job of explaining how difficult it is for our bodies to work in an aenorobic state - which for me (except in very young age and 22 - 32) has always been difficult to gain muscle mass -

my thought processes are really off today - but i wanted to get theses articles out -
heart rate these are Sue Jackson's excellent posts regarding orthostatic intolerance - it is helpful for people to understand because so much of this illness is counter-intuitive - and often people will encourage me i should do more or exercise more because that is what normally helps in fatigue situations d/t depression, anxiety, or acute type illnesses -

However, after reading these and consulting with my physician I don't intend to go one beta blockers for numerous reasons - but it also explains why my blood treatments work so well for me because they not only help with the infections but oxygenate my blood - i often feel as if i am starving for air or nutrients - despite breathing fine and just eating - but its this cellular dysfunction that i am very grateful so much research is going into....

alright - that's it for now - hope everyone enjoys the oscars tonight - as always i am looking forward to the jewelry.

kindling to fire

Or is it a match to kindling?  i have always done that - and i won't blame it on "cognitive dysfunction" related to chronic fatigue - that's what that avocado was like yesterday - a little spark that sets off a chain reaction overblown in its intensity.  You throw that avocado on damp wood and you get the minor lip tingle, and in an hour or so everything settles back in to normal - add it to an inflamed system fighting off other infections and it rages out of control.  It was hard to eat any food last night without getting symptoms and then i got a rash below my left eye and temple and this morning both my eyelids were a bit swollen - you are finally hearing in the mainstream media how the health of your intestines is vital to your overall health.  The majority of your immunity lies there, and we now know that getting "butterflies in your stomach" is a true physiological response - one of my favorite books is Molecules of Emotion, Candice Pert - she is brilliant and really "proved" the mind/body connection - but not in a cause/effect way - more that literally every cell in your body has complete memory - i read it too long ago to give you the best review - check it out though -

I read this link Wall Street Journal on Sue Jackson's blog - and beggars can't be choosers (thought i would throw another one in!) but i do hope that the researchers will look at this illness in a more functionally holistic way - meaning - all these "un-related" symptoms are not unrelated - my physician has really been looking at the role of the pituitary gland in my case for two reasons - one its role in immune function and two - that i fell out of a moving car when i was one years old -which has been a punch line in many of the mixed metaphors of my life! Anyways, her theory is that individuals with minor pituitary dysfunction sets of a cascade of problems - so as i patiently listened when i got home i googled away- and sure enough found these two articles pituitary/immune and this Misdiagnosing and found it fascinating.  The second article specifically speaks to mis-diagnosis of thyroid dysfunction in patients that had even minor head trauma d/t TSH not working optimally- something a number of doctors told me that it was not possible to have hyperthyroid condition without TSH being out of range first.  Well - I did. The point being - I continue to be disillusioned trying to find a magic bullet answer to this complex illness - but am grateful for those pursuing any answers.

I was discussing this point with my physician today, and I said I think there is a void in Western Medicine - think back to Hypocrates, many of the great physicians were artists, philosophers, they were healers...but now the competition to get into medical school is so fierce, it relies so heavily on MCAT scores, those that do well on a standardized test format and have insane GPA's in the sciences - you are getting this very narrow type of person - I know a number of very smart, caring - well rounded individuals that couldn't get into medical school - yet they would have been excellent physicians.  Then you have the movement into the specialities - like i said - if you need a heart transplant there is no better place to be than in America - but primary care got so boring with the current medical model - most people walk in diagnosing themselves - because somewhere along the line - prevention - building up immunity etc..got lost - so here we are - this society filled with auto and chronic immune illnesses that rely on pharmaceuticals to stop the symptoms - but where is the restoration of the entire body?  The pharmaceutical industry has done a brilliant job at stopping cascading event in our system - but restoring and re-building that's another ball game.

Yesterday, on the AOL newsfeed was the following headline - "what condition do 75% of Asthma Sufferers also have" the answer....GERD the article then went on to say that these conditions were two different diseases, require two different treatments and are unrelated - has everyone lost their mind?  Look to chinese medicine, naturopathic medicine, other integrative teachings - and you will realize that they while yes they are different conditions - they are physiologically related - there is often a reason behind the two co-existing.  I learned early on, with asthma patients make sure they have enough digestive enzymes and HCl because if they aren't digesting food properly, it will effect their lungs.  It is one body - one action has a reaction - and its connected by pathways and transmitters - it is impossible to constantly separate out organs and have a curative effect - you can have a symptom management effect though...

Well - there's my little rant for today....i encourage you to look at yourself in a more holistic way - hopefully the pendulum will begin to swing back again as we see our nation suffering from chronic illness after chronic illness -

(this is out of order - but i can't figure out how to move the entry's around...) (fyi)

A little sex...

In the City that is! okay - while i was getting my blood treatment today and gabbing away to distract myself - both my doctor and my fellow neighboring patient commented on how funny i am...i'm no stand up - that would be my cousin Jack - but I do have a pretty good sense of humor - they were saying i should be writing about my take on camping - and i told them i have a hard time conveying humor in my writing - so i will try to work on that.

i have a post that i began this morning as my eyes were both swollen, and rash on my face - lingering effects of avocado gate - and my body was once again craving my blood treatment - in my gut i just new it was what would bring me some relief - and sure enough it didn't disappoint.

so when i got back here, i was ready to go the pool - by the time i walked over i was out of breathe - it only took a few minutes to recover - and since its quite warm her in phoenix today i didn't waste much time getting into the water.  after about my sixth lap someone else got in and was swimming next to me - and i couldn't help but think...hmm he looks a lot like Chris Noth - and after the second time of us being at the same end of the pool - i blurted - "do you just look a lot like Chris Noth or are you Chris Noth" and he politely responded - "I am Chris Noth" - then i said "You do really good work" - "He said thanks" and we went on swimming.  After, as he was on a lounge chair reading a script i was worried that if it shows up where he is that he might think I tweeted it - i should of assured him - no i might just mention you on my blog...

I won't lie - it gave me a little extra kick!  It was that out of the ordinary moment that added to an already much better day than yesterday - i've heard stories of individuals that have lived with alcoholics and one of the worst parts about it is the unpredictability of that person - walking on egg shells never knowing who you may get - just like those awful experiments they do with mice - where if they are shocked at a predictable interval they can handle it, but if its random it drives them crazy - (thinking way back to psych 101) but the point being there is an element of that to this illness - yesterday this tiny bit of avocado through my system into chaos - and today i'm swimming with Mr. Big!  (this one's for you nerd) - I'll take today.

freedom's in your heart - 2/21

I probably shouldn't have drove home yesterday from my appointment - but i felt really good prior to it.  I was driving singing out loud - windows open - lucky to be in the sunshine- but everything started to fade - like the air slowly being let out of a balloon.  I had all my snacks with me - sometimes i look like a mother of a toddler - everything you may need - but i'm the 3 year old.  I felt okay leaving, but then stopped at the grocery store and i knew things were getting bad when i couldn't multi-task.  My mom called to check in on me and i couldn't talk - i became robotic in thinking...like that little girl that was on sesame street...a cup of sugar, gallon of milk, stick of butter...over and over.

By the time I got home, all I could do is get in bed.  My friend was coming over later to help with dinner but by 5pm i had to get out of bed and worked slowly to prepare something to eat.  By the time my friend got here - the act of making dinner and eating just tipped the scale and it was like i was no longer singing rolling the deep - i was spinning down deep.

so today there was no option but to take a car to my appointment.  i was lucky to sleep hard and when i woke it was tough to move.  once again, the robotic thinking began.  Juice - Bed.  Okay, could barely feel my feet below me - and i didn't want to have the phone away from me, worried i would fall and be like the lady in the commercials!  "i've fallen and i can't get up!" Next step - eat.  Okay, you can make it - that's done - back to bed.  Oh, and all the digestion issues i have decided not to share - google it - then when i made it back to get ready i just looked hard at myself in the mirror - focus - focus - you can do this - again.  Wash face. Done. Moisturize. Done.  Brush teeth. Done.  Breathe. Breathe.  Okay - look presentable - fake it - fake it.  Not bad.  Back to lay down.

Now its time for lunch - i know i'm getting a blood draw today - need to eat.  slowly slowly.  Alright, feeling a bit human.  Car is here.  I get in, and the thing is - I really like people.  Its not a small talk thing, i have always enjoyed meeting and learning about other people. So when I give the address to the driver - John - i make a joke not to worry that I'm not contagious.  John asked me questions, and then talked to me about his childhood, it was one surrounded by opportunities to make poor choices.  He talked about a man he knew that served 10 years in maximum security prison and after being released he told John that he was more free in prison than he had been before - and was trying to teach John the lessons he had never learned.  John said he was only about six and couldn't understand in his early youth what he meant - but has he became a teen and saw the world around him - he knew exactly what he meant.  The words that man told him became his mantra - that "freedom is in your heart."

As i sat in the plush leather seats, looking out the window -i thought about how this illness takes many of your freedoms - but there are elements all around us that can never steal the freedom of our hearts -

After my appointment, we rode quietly back, i sunk into the back seat - sunglasses on - pretending this black sedan was driving me for a different reason - day dreaming - i made it.  As my eyes were closed behind my glasses - and i was drifting - John interrupted the thoughts in my head - and out of no where - said that I was very brave.  And it meant so much to me, because this illness makes you feel anything but brave and I felt grateful once more for the kindness of strangers.

When,  I got inside the house, and talked to my friend on the phone and she was telling me about her what a great day she was having because someone called and complemented her on her work - and how good it made her feel. Then she hung up the phone and a co-worker made a dumb blonde joke, and how in an instant it changed her mood.  And I thought again about my "driving miss daisy" experience today, and how the kind words did much to lift my spirits.  Its always a reminder how powerful our words are to others and the effect they have on others...thanks john.