"You're here today," my friend Paula

said. "Start living!" Strange advice to

 give a man who has a terminal illness

Time to Live

BY KIM CONNERS

OSHAWA, ONTARIO, CANADA

AS TOLD TO MARILYN K. STRUBE

THINK IT'S ONLY FAIR TO WARN YOU: YOU'RE reading the words of a dying man. There's no cure for what I've got.  Not much in the way of treatment, either.  Just a steady, usually rapid, deterioration of the central nervous system.

It's ALS, also known as Lou Gehrig's disease.  Here's what happens to someone with amyotrophic lateral sclerosis: Nerve cells that control muscles die.  The muscles get weak, then stop working.

Eventually the person is totally para­lyzed.  Virtually every system of the body is affect­ed.  The mind usually remains completely aware through the whole devastating process.  Death, usually from respiratory complications, is typical within three to five years of diagnosis.

I was diagnosed in 1995, at age 37.  The disease first hit me in my hands and feet.  Then it spread.  ALS always spreads.  Before long I was so feeble I needed a cane to get around.  Soon it would be a wheelchair, then a respirator.

My wife, Liz, and I felt it would be best for our family if I placed myself in a long-term care hospi­tal.  Liz worked full time and was trying to care for me and our boys. She had enough on her plate.  Our sons took it hard.  Darren, only 10 years old, and Adam, 8, sobbed. "Please, don't go!" they begged.

But I had to. For my wife's sake. For our children's.

Eleven months later, I could move only my head and the muscles in my face.  My words came out so garbled no one could understand them.  Things like "hello" or "yes" or "no" were easy to commu­nicate by blinking or raising my eyebrows.  For more complex statements I used a laptop com­puter.  A baseball cap with a silver dot taped to the peak enabled me to activate a head mouse on my computer.  With limited head movement, I could access a visual keyboard on my computer screen, which held a memory of my vocabulary.

I couldn't even hug Liz.  All I could do was breathe in her perfume, trying to fill my senses enough to last till her next visit.  I passed time staring at the TV or looking at the photos taped to the wall of my room.  Me and my buddies.  Our family photo before ALS struck.  Me and the boys fishing.

"`You've got enough on your

plate,' I told my wife. `You can't

be my primary caregiver."'

Might as well be dead already, I thought.  I can't be a father to them anymore. Or husband. "What do I have left?

I didn't want my friends to see me like this, so few knew where I was.  I wouldn't let Liz tell them either.  I had the door to my room papered with signs: KEEP OUT. SEE NURSE BEFORE ENTERING. NO VISITORS.

The signs fluttered one day as a woman stormed in.  My eyes widened.  "Kim Conners!" she said.  "Why didn't you let us know you were here?  You were best man at my wedding.  We used to see you every Christmas.  And then you just stopped showing up.   Yesterday I find out you're here, just a stone's throw from my house.'

Paula.  Paula Ferry-Wineck.  I blinked, then raised an eyebrow.  My way of saying hello.   But how would she know that?  So I tried to say her name.  It came out a grunt.  A nurse walked in. "Ma'am, you're not allowed in here.  Didn't you see the signs?"

"He's an old friend," Paula said.  "Let me stay, please."

"How about it, Kim?" the nurse asked.  I knew Paula.  Once she got an idea in her head there was no stopping her.  I raised my brows.  "That's a yes," she told Paula.

Paula wondered, "How on earth are we supposed to communicate."  I shifted my gaze to the laptop and the baseball cap.  "This?"  Paula asked.  I blinked "Yes."  She put the hat on me and pushed the computer close.

-- hi paula, I tapped out. -- just learning how to use this thing. i can do e-mail too. liz up­dates me on the kids and home.

We passed that afternoon with Paula peppering me with questions and telling me what was new in her life and me laboriously pecking out my words on the computer.

"Look at the time," she said.  "Gotta run.  I have to make dinner for Jim and the kids."

-- what's for supper?

"Steak and onions with HP Sauce on kaiser rolls," she said.

"Mmmmmmm," I murmured.

"Can you eat regular food?" she asked.  I blinked   "yes.”  "I'll bring you some leftovers tomorrow.  We need to fatten you up."

-- what's the use of that?  i'm dying.

"We're all going to die someday, Kim.  But if you're not busy living, then you're busy dying.  You're alive today, bud.  Start living."

With that, Paula left.  Her boots clicked down the hall.  I listened till the sound faded.  Then I turned my head to the window.  The moon rose above a barren, snow-covered field.  Alive?  Who was she kidding?  This was living?

Paula was relentless.  She'd bring me supper, chopping her good home cooking into pieces I could manage.  We also talked online.  One day I typed out a thank-you note, telling her how much I appreciated her taking time out for me.  I knew her schedule was full with work, church and fam­ily.  She didn't need me to worry about.

-- Nonsense, Kim, she wrote back. Who else' would listen to me rattle on about life, love, God, etc.?

-- ya got me there, I replied. -- i am a captive audience.  Ha ha. by the way, merry christmas.

--You too.  See you Jan. 2 when we get back from holiday.  Bye!

Liz and the boys went away too.  I insisted they take a break from me and go see Liz's family.  "The boys deserve a real Christmas," I told Liz.  So did she.  She was exhausted.  I spent Christmas alone in my room, just like I wanted to.  A few days later I had another unexpected visitor. My brother, Eric.

"Kim, I've got some very bad news."  His voice was shaking.  So were his hands.  He wouldn't look at me.  "There's no easy way to tell you this.  Liz went snow tubing.  There was an accident yesterday.  She's ... Liz is dead, Kim.  She hit a snowmobile.  It was instant.  I'm so sorry. . . "

No! NO! The room spun. My throat tightened. Then I lost consciousness.

A couple of days later I made the trip from the hospital to the funeral home.  A line of people shuffled past Liz's casket to pay their respects.  When they walked past my wheelchair it felt as if they were paying their respects to me too, almost as if I were at my own funeral.  They didn't say much.  Adam and Darren were inconsolable.  I wanted so much to be able to wipe away their tears.  Afterward the nurse pushed my wheelchair down the aisle and through the doors.  With all the tubes and pumps and machinery attached to me, I looked like a science experiment gone hay­wire.  No wonder people were so uncomfortable.  A blizzard had started.  My lap filled with snow.  I stared at the white powder, trying to wish it all away.  My pain, my sadness, my grief, all of it. 

The next day Paula brought food.  I wasn't hungry.  She took the plate away, put on my hat with the stick and set the computer in front of me.

"Let's talk. How are you doing, Kim? Really? And how are the boys?"

-- miserable.  i can't sleep.  the kids are with relatives.  i miss them terribly.

"If you could be home with them, would you want to?"

-- what for?  so they can watch another parent die?

"No.  Because they need you.  And you need them.'

-- they deserve better.

Paula shoved the keyboard away from me.  "If you're gonna have a pity party, don't invite me.  Talk to Adam and Darren.  See what they want.  Maybe you don't have much time left, but you do have a choice how you live it.  And may I remind you: You are still alive.  I know how much you love your boys.  God loves you more than that.  He will never leave you, no matter what.  Don't you want Adam and Darren to be able to say the same about their

father?"

Who the heck does she think she is? She doesn't know what it's like for me. Trapped in a useless body, my life draining away, cell by cell, in this awful room. I lost my wife and I've got no hope. If God's with me, I sure don't feel it. I turned my head from Paula just before she walked out.

That night I lay in bed staring at my pictures of Adam and Darren.  Go home?  I'd be a burden.  What had Paula said that afternoon?  How much thought had I given to what Adam and Darren needed?  Not a lot.  I hadn't been much of a pres­ence in their lives lately.  In fact, I'd kind of re­moved myself.  I thought it was for their own good.  But how must they feel?  Maybe a little bit like I felt thinking God had turned his back on me?

The boys' next visit, I asked, --what do you think about me moving home?

They had tons of "what-ifs" for me.  I could barely keep up as I typed on the keyboard, trying to reassure them. Finally, Adam crawled into bed with me and Darren leaned close to the computer screen, squinting at what I'd typed.

-- i'm not sure about a lot of things either, but i'm learning to live one day at a time and trust god to help me.  i've been mad for a long time about having als.  i didn't think it was fair.  but now i know that if i hadn't gotten sick, i might never have figured out how important god is.  and you two.  i love you guys so much that i ache when you're not around.  if i can love like that, just think how much god loves his children.

Paula came to see me that night. "How'd it go?" she asked.

-- they said they love me and want me to come home as soon as i can.  they said they need me.  I could barely see the keyboard through my tears.

She put her hands on my shoulders.  "I don't think I've ever said this to you, Kim.  But I am so sorry you have ALS.  Things happen that we don't understand.  We just have to keep on going, no matter what.  God has a plan for you, Kim.  He's al­ways had a plan for you.  That's why you're still here.  You must trust him."

Paula wiped my eyes and hers.  "Okay, enough of all that.  We've got to get busy."  She whipped out a planner and started making a list of all the things "we" needed to do.  Hire a caretaker, get a housekeeper, a van with a lift, a ramp for the house.  On and on. And during the coming months Paula made sure that each and every item got checked off.

"If I hadn't gotten sick,

I might never have realized

how much God loves me.'

I'm back home now.  I still fight my battle with ALS as I prepare for longer periods on a ven­tilator.  I've adapted well, and so have the boys.  Paula jokes that I rule the house with an iron computer.  Maybe I do, but they're good kids.  They don't need discipline as much as they need love.  I watch Darren building his tree house and shooting hoops. This past summer we drove two hours one way so I could see him play in a soccer tournament.  And I watch Adam ride his stunt bike, deliver his newspapers and play hockey every week.  I'm probably the only parent in the bleachers who gives a "high brow" rather than a "high five" when his son scores.  But I feel just like any other parent-I'm proud of my kids, hopeful for their future and grateful for mine re­gardless of what it holds.  Each and every day is proof of God's love for me.

Yep. This is living. •

"Choose to make your imagination your ally. You

do have a say about what pictures live in your

head -- and you can choose the most positive im­ages

to shape your life." -actress JANE SEYMOUR