I received the following letter from a gentleman on the Quad-list.  It was in response to a post I had made about being frustrated and angry about my paralysis.  It really touched and inspired me.  Now I go back and read it when I need a little lift.  I hope you find it as inspiring as I do.

Thank you David for sharing this with me and giving me permission to post it on this page.  May God continue to bless you.
                                Nicki


Dear Nicki,

Please allow me to take you back eleven years, to the day I was diagnosed.  I was seated on the examination table, with several interns surrounding me, when the doctor began to speak.  I heard Amyotrophic Lateral Sclerosis, he said you might know it as ALS or Lou Gehrig's disease.  I was familiar with the disease, because just prior to this appointment, I was discussing my symptoms with a colleague at work. He was telling me his friend had the same symptoms and it was ALS.  I was very interested to speak to his friend so I asked if I could contact him.  The reply still haunts me, "I wish you could but he is dead".  With my head slumped, not able to look at the doctor, I asked "how long?".  Without hesitation he said, "three to five years".

That was the beginning of a journey of many changes and challenges.  This disease is a thief, stealing your ability to walk, to hold your loved ones, to speak, and finally the ability to take a life giving breath.  Each one of these losses presents enough of a challenge for one to overcome.  ALS ravages much more than the body;  it tries to destroy families, marriages, friendships, dreams, one's sanity, finances, and even the will to live.

It was a gorgeous spring afternoon, an afternoon that on many occasions I would be on the river with the cool breeze off of the water blowing on my face, feeling the current massage my legs, and readying my fly rod to cast to a rising trout.  But this afternoon I left the doctor's office with what I thought was a death sentence.  My head was spinning as I drove the few miles home.  Selfishly I looked out my car at others around me and thought how fortunate they were to go about their carefree lives.  I felt as if the world should stop and take notice of my plight, but it did not and went on without me.   Why didn't everyone take notice?  This angered me.  I was certain my life was over.

Several days passed as I wallowed in self-pity.  During those darkest of days, a reoccuring thought kept playing in my mind,  why didnt the world stop and  pay homage to me?  After many prayers, asking God to show me the way, I realized the entire world  had it's own burdens.  I was no different than the people I  saw from my car driving home that day.  They all had difficulties in their lives, some small and some much greater than mine. The difference was I had not faced my situation, rather I was running from it.  I hated living this way.  I saw I had two choices: to let this disease consume me totally physically and mentally, or to face this monster head on and fight.  I chose to continue living and to fight with all that I am.

The first few years I felt an urgency to pack in the experiences, but now realizing I was missing out what was really important in life.  I guess now I still push life's envelope, but I try to enjoy and savor each experience and not rush to the next.

As time progressed so did the disease.  I knew from the beginning I would take any and all measures to prolong my life but I couldn't or wouldn't allow myself to think that far.  My form of denial was not to be around anyone who had deteriorated further than me.  I regret this now because they had so much to offer me.

Changes and challenges began to present themselves; I took them on, though in a reluctant manner.  Leg braces, cane, walker scooter, wheelchair, feeding tube, communication system, Bi-pap, and finally a ventilator were all met with resistance, but brought very welcome results.  The vent was the change I feared most of all.  I suppose it was a combination of losing independence and the stigma of a vent.  Society is so quick to write off the terminally ill.  In these days of Dr. Kevorkian and assisted suicide, the press coverage makes this seem like the logical solution.  So little is written about the celebration of life.  I was so shocked and amazed how the vent improved my quality of life.  I know I would not be here today without the vent, but it has far exceeded my expectations.  It would have been reassuring to read other positive vent experiences.  Life on the ventilator has given me a second chance at living, an opportunity to help and encourage others.  I have had the chance to help a gentleman in Panama acquire a communication system, a wonderful lady in Washington access her computer, and encourage a friend in California to accept his situation and live life.  Maybe this would have all taken place without me but it has made my life very rich and worthwhile.

In making my decision to go on the ventilator I considered many things.   I tried very hard to make a rational decision vs. an emotional one.  On a rational level, I knew my mind would remain lucid, therefore viable life exists.  I knew I still had much to offer my children and others.  I have experiences to share and new ones to make.  Emotional thoughts I considered were being trapped inside a useless body, also becoming more of a burden to my family.  I realized that purely emotional decisions often had fatalistic results.  As a Christian, I know God loves me and gave me life.  I also know He gave me a will to do as I choose with this life.  I choose to live life for the experiences, the good with the bad.  I pray for the strength not to regret the past or fret the future, but to rejoice and live in the present.  Who knows, tomorrow there might be a cure or you could teach someone how to appreciate the things that really matter in life, but you will never know unless you continue to fight and live out the life you have been given.

God bless and keep fighting,
David Jayne

If my days were untroubled and my heart always light,
would I seek that fair land where there is no night?
If I never grew weary with the weight of my load,
would I search for God's peace at the end of the road?
If I never knew sickness and never felt pain,
would I search for a hand to help and sustain?
If I walked without sorrow and lived without loss,
would my soul seek solace at the foot of the cross?
If all I desired was mine day by day,
would I kneel before God and earnestly pray?
If God sent no winter to freeze me with fear,
would I yearn for the warmth of spring every year?
I ask myself these questions and the answer is plain,
If my life were pleasure and I never knew pain,
I'd seek God less often and need Him much less,
For God is sought more often in times of distress,
And no one knows God or sees Him as plain,
As those who have met him on the pathway of pain.
                                         Author Unknown

The soul would have no rainbow if the eyes had no tears.
                                                                         Author Unknown

A bird does not sing because he has an answer...
                                  he sings because he has a song.
                                                                        Author Unknown

There is a special place in life,
That needs my humble skill,
A certain job I'm meant to do,
Which no one else can fulfill.

The time will be demanding,
And the pay is not too good,
And yet I wouldn't change it
for a moment - even if I could.

There is a special place in life,
A goal I must attain,
A dream that I must follow,
Because I won't be back again.

There is a mark that I must leave,
However small it seems to be,
A legacy of love for those
Who follow after me.

There is a special place in life,
That only I may share,
A little path that bears my name
Awaiting me somewhere.

There is a hand that I must hold,
A word that I must say,
A smile that I must give,
For there are tears to wipe away.

There is a special place in life
That I was meant to fill,
A sunny spot where flowers grow,
upon a windy hill.

There is no room for sorrow,
And the best is yet to be,
And somewhere in this world
There is a place for me.

Author Unknown

I asked God to take away my pain.
God said "No. It is not up to me to take away,
but for you to give it up."

I asked God to make my handicapped child whole.
God said "No. Her spirit is whole,
her body is only temporary."

I asked God to grant me patience.
God said "No. Patience is a by-product of tribulations,
it isn't granted, it is earned."

I asked God to give me happiness.
God said "No.  I give you blessings,
happiness is up to you."

I asked God to spare me pain.
God said "No.  Suffering draws you apart from
worldly cares and brings you closer to me."

I asked God to make my spirit grow.
God said "No.  You must grow on your own,
but I will prune you to make you fruitful."

I asked for all things that I might enjoy life.
God said "No.  I will give you life so that you
might enjoy all things."

I asked God to help me love others
as much as he loves me.
God said "Ahhh, finally you have the idea."

Author Unknown

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