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Man with MS says he has everything to look forward to

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Editor's Commentary: 

Editor's Commentary: 

Perhaps it is good to have a beautiful mind, but an even greater gift is to discover you have a beautiful heart.  

John Nash - in a Beautiful Mind

A journalist turns his finished copy over to his editor.  Often the editor will decide the title for the piece.  Sometimes the journalist objects.  Sometimes the title doesn't accurately represent the piece. I think the title of this story is the latter.  I re-read this story several times and can not find mention of Tim Tregarthen being "terminal."  Tim Tregarthen has MS.   MS is not a terminal condition, in that you won't die from it.  Granted, there is no mention of the type of MS Tim has.   However there is one extremely  rare  type of MS that is terminal.  We aren't told if Tim has the rare kind.  What Tim has that to some would seem quite rare, is a desire to adopt a child with disabilities. 

We are all terminal - we can't be sure we will be here tomorrow.  But some of us will be given a relative time- frame  of remaining life.  Still, often doctors are wrong. Take for instance Stephen Hawking, the brilliant scientist.  He has ALS, also known as Lou Gehrig's disease. ALS is a terminal disease.  When diagnosed, Stephen was told he had less than 3 years to live.  He has lived well over thirty times that.  The disease has completely disabled him.  He is unable to walk, bathe, and  toilet himself.  Unlike Tregarthen - Hawking needs  someone to feed him through his feeding tube, and needs a computer to speak. Tim can speak, but uses a voice-activated computer to do his work.  

David Jayne is another man who I admire.  David has lived with ALS for 17 years.  David continues to amaze people with his unselfish work.  (See davidjayne.htm and noninvasive brain computer technology.) What these men also have in common is they all have children, enjoy their lives, and have no thoughts of assisted suicide or euthanasia.  They inspire countless others and are making a difference.  

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Quality of life is subjective.  

Tonight as I write this I am thinking of  Charles Fariala and his mother Marielle Houle.  Charles lost all interest in life, blaming MS for his troubles.  He asked his mother to help him kill himself.  She agreed.  He is dead, and she is the walking wounded.  How tragic that neither Charles or his mother got the help they desperately needed.

But mostly my thoughts are with Terri Schiavo.  She is also severely disabled.  She has been diagnosed as cognitively disabled being in a so-called persistent vegetative state (PVS).   Some very prominent physicians disagree that she is in a PVS.  She can't use a computer as a speaking aid, but she can blink her eyes to communicate a yes or no. She has her ways of communicating how she celebrates her life.  She has never published a book, nor does she have children.  She has an adoring family, wonderful friends, and an ex- husband who wants her dead.  Michael Schiavo doesn't want anyone else to help her live.  His incessant death wish for her is beyond my understanding.  To me it is as if he is stalking his victim - waiting for the moment he can kill her, but legally.  If he succeeds in having her feeding tube removed he will at least be guilty of accessory to murder.  

No one would dare remove Hawking's  or Jayne's feeding tube without asking them.  No one would dare stop bringing food to Tim with the clear intent to make him die a cruel and horrible death by dehydration and starvation.  Why?  Probably because they are able to speak for themselves, and are not under "legal guardianship."  Terri can't speak for herself but she has the promised commitment from her loving family and friends  including Governor Jeb Bush, to help care and protect her for her for the rest of her natural life.  These and countless others internationally  want desperately to see Terri gain back her right to life.  (For complete information and update on Terri, go to http://www.terrisfight.org/

Tregarthen, Jayne, and  Hawking have risen above their physical weaknesses.  They help to show us we too can enjoy life and not just  survive.  They help us by sharing how they overcome  challenges.  They prove that  with perseverance, steadfastness, and determination life is just as great for them as it is for any so-called able bodied person.  

Such stories need wide circulation.  Far too many 'worried well' think assisted suicide means to just pull the damn plug and let those who are dead anyway rest in peace.   I believe  there are even some who sit on the bench who think just like that, but hide behind fat thick legal words to protect their real feelings.  Sadly it seems like citizen Joe's knowledge or experience with someone with a disability is exiguous.  Could it be that the media posts only the scantiest bits of accurate and compassionate stories of people with disabilities and how much their family loves and needs them?  I applaud Larry King for being different by having as his guests Terri's parents, Mary and Robert Schindler and their lawyer, David Gibbs.  (CHN has posted part of the transcript.  Go to CNN LARRY KING LIVE Interview With Mary)  

I find the amount of degenerate media attack on Terri incredulous.  Surely such lofty mentality is meant to disparage those who have set aside their life, to do whatever it will take to protect Terri.  Most of those who type out their bigotry could never call Terri a "useless eater" to her face or her loved ones,  but blatantly write obtrusively  and hide behind the 'freedom of speech' act.   How utterly ignoble.  Those are the real, true-blue cowards.  

Tim Tregarthen body lies in a bed, in restraints -  but his unrestrained spirit soars, inspiring all those around him.  There are no restraints on Stephen Hawking's mind ... he continues to search the universe and teach others what he has spent a lifetime learning about.   It's impossible to even try to put restraints on David Jayne's activism.  He continues to work hard helping countless numbers of persons with disabilities to move about and live independently.   In spite of some heart aches and disappointments, these men are celebrating life. 

So - as an afterthought, it seems after all, that the title best represents Tim's story.  Indeed, he has everything to live for.  

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Cheryl Eckstein, CHN October 17, 2004

 

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Man dying of multiple sclerosis says he has everything to live for

By CARY LEIDER VOGRIN - THE GAZETTE

Tim Tregarthen gladly shared the Chivas Regal he had in his room when a dying man down the hall requested a glass of scotch.

Tregarthen never had met his neighbor on the fourth floor of St. Francis Health Center, but he heard the man died the next day.

“I really have not gotten to know any of the patients here,” Tregarthen said of the terminally ill people at Pikes Peak Hospice. “That’s the one thing that’s disappointed me.”

The hospice, usually reserved for those thought to have six months or less to live, has been Tregarthen’s home for 18 months.

Multiple sclerosis has left him a quadriplegic.

He can’t move his legs and can’t feed himself. He blows into a clear tube situated near his mouth when he needs help from a nurse. His hands are wrapped in blue restraints to keep them from contracting into fists.

Aside from occasional outings or a trip to church, he spends his days in Room 412.

Still, he says he looks forward to each day.

He also said he’s happy.

“I enjoy my life, and I don’t have any desire for it to end,” he said recently.

Those who have met Tregarthen — known in the community from his career as an economics professor at the University of Colorado at Colorado Springs — use the same word to describe him: “inspirational.”

Tregarthen, 58, enjoys an occasional good drink, visiting with friends and former colleagues and working — yes, working.

He and a Colorado College professor are making major revisions to an economics textbook Tregarthen wrote during his teaching days at CUSprings. The first edition was published in 1996.

The voice-activated computer he uses for his work — provided a few months ago by CU-Springs — has been liberating, he said.

“It has given me a new life,” he said last week, clad in a T-shirt from Chico State in California, where he received his undergraduate degree.

Tregarthen’s words come slowly and softly, but clearly. The computer recognizes his voice and acts according to his commands, such as “scroll down” and “send that.”

He uses the laptop to read the paper, study the Bible and send e-mail.

“Dear Christina comma new paragraph,” he said last week while composing an e-mail to a friend and former colleague.

“Thank you for writing period. Please bring a book to read. . . . I’ll see you tonight period. New paragraph Tim, send that. Close. Go to sleep.”

He uses the computer primarily to research information for the third edition of his textbook “Economics,” used at colleges across the country.

“What he is doing is so exciting to me because he has a very serious disability and still is able to use his mind and do something creative,” CUSprings Chancellor Pam Shockley-Zalabak said. “I don’t know of many examples of that kind of courage and that kind of continuing will to make a difference.”

Tregarthen offers a lesson in possibilities, she said.

 

SOMETHING IS WRONG

 

Tregarthen was 29 when he was diagnosed with MS.

He remembers the moment he realized something was wrong. He was driving to work and noticed the colors of freeway signs seemed less vivid. They looked gray, not green. His vision in one eye was blurred.

He went to an ophthalmologist that same day, in 1975.

“That was a Friday, and the ophthalmologist said something that served as a guide to me in economic forecasting. He said my vision would either get better, get worse or remain the same,” Tregarthen said. “He was correct. My vision deteriorated considerably.”

When Tregarthen was told he had MS, he went on the offensive, following a low-fat diet that some experts thought would slow the assault on the central nervous system. He took up long-distance running and swimming.

Symptoms of his condition surfaced during a half-marathon in the late 1980s.

At the 9-mile mark of the 13.1-mile race, he felt like he was losing control of his legs. Other runners began passing him.

“By the time I got to Cascade Avenue, people stopped passing me, and I thought I was doing better. It suddenly occurred to me that there was an alternative explanation,” he said, again with a smile. He finished last, he said.

The jokes and smiles are typical Tregarthen, friends and colleagues said.

“He’s got a great sense of humor. He’s very quick-witted,” said Christina Martinez, a CU-Springs librarian who spends Tuesday evenings playing Scrabble with Tregarthen.

Tom Napierkowski, also a former colleague, said he’s never heard Tregarthen complain.

“One of the remarkable things is, heck, I can wake up with a headache and be a pretty grouchy character, but given the physical trials, which he faces every minute of his life these days, I’ve never seen him grouchy, I’ve never seen him cranky,” said Napierkowski, an English professor. “He still wants to participate in life.”

FAITH HELPS

Tregarthen attributes his attitude to his faith.

Icons of saints line the walls and shelves of his room, as do several beautiful handmade wood crosses given to him by friends. A nightstand at the foot of his bed is filled with religious materials.

He wasn’t always so spiritual.

“I did not become a Christian until 1984,” he said. “When I got to college, I drifted away from the church and considered myself an agnostic, which I regarded as the only intellectually sound position, and I realize now it was an absurd position.”

The 1980s brought many other significant changes.

He married in 1985. He and wife Suzanne adopted their first child, son Doran, in 1986. The next year, they adopted baby Brittany, who has Down syndrome.

Doran Tregarthen is a freshman at CU-Springs, majoring in economics.

Tim Tregarthen received a Ph.D. in economics from the University of California at Davis and taught the subject at CU-Springs from 1971 to 1998, when his condition forced him to retire.

Five years later, he began requiring home care and in March 2003, he moved to the hospice.

Andrea Doray, director of communications for hospice, said the length of Tregarthen’s stay, while not usual, isn’t unique. Others have been there longer.

Tregarthen first fought the notion that he should go to the hospice.

“I was strongly opposed and thought I could talk them out of it, but I realize now it’s the right choice and have been extremely happy with the care and love and support that I’ve gotten here,” he said.

From his bed, Tregarthen has a partial view of Garden of the Gods. A photograph of him running a race through that park sits near the window.

Crayon drawings from Brittany are tacked to a bulletin board on one wall in his room.

He spends most of his days working on his textbook.

Volunteers massage his hands and feet with oils, and friends visit daily and help him with most meals.

He sees his son regularly, but his wife and daughter have moved to Rifle. The couple recently separated.

Tim Tregarthen said learning his marriage will end has been “absolutely devastating.”

“I thought that there was no possibility that the marriage would fail,” he said, citing the doctrine of the orthodox church to which he belongs. When possible, he likes to attend services at Ss. Constantine and Helen Church, near Interstate 25 and Fillmore Street.

“I’ve gotten wonderful support from our church, from people at the university and people from the old neighborhood,” he said.

Even news of the impending divorce — received less than a month ago — hasn’t broken his spirit.

“I’m basically an optimistic person, and I pray every day that God will cure me,” he said. “And whether he chooses to cure me now or in heaven, I don’t know.”

bulletCONTACT THE WRITER: 636-0236 or mailto:cary@gazette.com
bulletSource:  http://www.gazette.com/display.php?sid=1242845

 

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