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joelc

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We were interviewed in January and the article just came out in the Vancouver Sun and the Province newspapers Feb 17th. It was done by the ALSA in BC as part of an ALS awareness campaign.

Here is the content:

“I try to be a positive voice”

Joel Cutler always thrived on juggling multiple work and social roles. Riding the waves of life’s challenges and opportunities, he and his wife Christine built a dream home overlooking the lake, surrounded by friends and the calm of Nature. That all changed in August 2005 when he was diagnosed with ALS. The life they worked so hard to achieve, disappeared. Now he wonders how to make new friends, bound to a wheelchair in a new city.

Pssssssh-ke. Pssssssh-ke. Pssssssh-ke.

The portable ventilator that gives Joel his every breath pumps with precise regularity, oblivious to all the challenges Joel and his wife of 38 years, Christine, have met with grace and pragmatism since Joel’s diagnosis of ALS in August 2005.

“It’s busy,” says Christine gently at their kitchen table. “I’m always concerned about making sure all the equipment is clean and sterilized. I can’t just go out and run an errand anymore.” The ventilator needs to be constantly monitored should a part of the system go awry, but it has given Joel relief and mobility from the early onset breathing difficulties from the disease – and given the couple more time together.

Joel and Christine Cutler live one of those meant-to-be love stories you see in the movies. Born and raised in the Kootenays, Joel saw Christine on her first day of school when she moved to Nelson from Creston in his grade nine year. “I saw her and I just knew I was going to marry her,” says Joel. “I hadn’t even talked to her yet.”

Joel started his varied career as a service technician with Xerox, and was transferred first to Prince George, and then to Kamloops. He then did a stint selling life insurance before he got his certification as a journeyman carpenter and cabinetmaker, concentrating his efforts in housing construction. When the economy tanked in the 1980s, he opened up a custom woodworking shop to make cabinets and furniture.

It was to the Briercrest Bible College in Saskatchewan next for the couple where Joel completed both Undergraduate and Graduate degrees finishing with a Master of Arts in Christian Ministries degree with a Counseling major, while Christine worked for Briercrest Biblical Seminary for about 6 years as Administrative Assistant to the Dean of the Seminary. Joel worked as a pastor in Moose Jaw, and Christine continued working in the Seminary. While at the college, he utilized his computer expertise, restructuring their complicated computer system – a challenge that saw six others before him give up in defeat.

“Whatever he tackles, he always does it right,” says Christine. “He’s always been that way.”

Swift Current was the next stop for the couple, before they returned to Nelson in 2000. Joel started a computer shop to take them into retirement, and they bought their dream home overlooking Kootenay Lake. Then the symptoms started. “My hands,” says Joel. “It started in my left hand where I was losing dexterity and strength. I couldn’t do the fine computer work anymore. I was also having so much trouble energy wise, it wasn’t like me at all.” It took six months to get the official diagnosis, and when he did, Joel went to see his older brother, with whom he’d recently gotten back in touch.
“I wandered over (to coffee shop where his brother was) and I just blurted it out,” remembers Joel. “I was numb.” They talked it through, and the pragmatism that characterizes the family took over.
His brother advised him to prepare for the changes that would come in his life.

Joel and Christine reluctantly sold their home, as it couldn’t be modified for all the physical changes that Joel would go through with the progression of the disease. They started again with Joel’s mother, his father having passed. The couple adapted and soon they had a new dream home, on seven acres of pristine land this time, again with access to the lake and their boat.

But life threw them another curve. Joel started having difficulty breathing. “ALS usually starts in the hands or legs then works through your body, lastly affecting your breathing. It started with my hands, but not my legs, so I figured I had lots of time,” says Joel. “But then it started affecting my diaphragm. I couldn’t breathe, I couldn’t lie down.” With the support of his wife and children, Joel decided to undergo a tracheostomy and let a ventilator take care of the laborious breathing for him. The couple moved to the Lower Mainland to be closer to their children and support services for a person on a ventilator.

Joel and Christine now share 4 acres with their eldest son and wife in Abbotsford. Joel is thankful he has so much support from his family, and continues to be a role model of endurance in tough times for his four children and six grandchildren. “There’s no sense in getting bent out of shape about it. So why not depart this life being happy instead of being bitter, wishing you weren’t dying.” He adds: “I plan for the future.”

Today, Joel can stand and swivel on his legs with support but remains mobile in a wheelchair on loan from the ALS Society of BC. But never the downer, Joel has taken to channeling all his energy into what he can do. Much of his time is spent on Internet forums with other people living with ALS, advising and counseling.

“There’s so much gloom and doom about this disease. I try to be a positive voice,” says Joel “Just get on with your life, enjoy the day, and make the most of it.”

“When I have a down day, Joel helps bring me up,” says Christine, gently removing a piece of lint, smoothing down Joel’s blue corduroy shirt with her hand.

Pssssssh-ke.
“I still eat today,” says Joel.

Pssssssh-ke.
“I can still talk.”

Pssssssh-ke.
“I can still use my computer. It’s a great day.”
 
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Al

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Good story Joel. Thanks for posting it. It's nice to get some background on the members.

AL.
 

CindyM

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why not depart this life being happy instead of being bitter, wishing you weren’t dying

Words we should all take to heart, Joel. Thanks for posting the story!
 

Marjorie R. Wilcox

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Super-duper, Joel and Christine. We are with you all the way and doing pretty much the same. You have had and are having a full life.
 

Micheline

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very nice...you and your wife look look amazing.

Micheline
 

MtPockets

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Great story Joel. It is so good to have someone share a positive outlook on ALS with the public and bring much needed attention to this disease. Hang in their Buddy.
 

vmd

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Thank you for the story.
 

ktmj

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Thanks for being such an inspiration joelc. If it were not for my faith, and the faith of those around me - not sure how I would get by.

God bless you and your family!
 

rose

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Joel,

The article was positive, encouraging and informative, just as you are on the forum. Thanks for sharing.
 

crystalkk

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Thanks for sharing your encouraging story.
 

joelc

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Thanks everyone!

It was fun doing this and because of it I have heard from some people I knew 30 years ago, as well as many PALS and CALS.

God Bless each and every one of you!
 

brendapals

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joel,
Great story, thanks so much for sharing! You are an inspiration to us all!
 

BarryG

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Hi Joel and Christine ;
What a great interview! Congrats to both of you and the ALSA for raising the awareness of the disease. I'm now back home in Alberta after my short visit to Victoria and while passing through the lower mainland and on the island I noticed people looking at my "Barry's Brigade walkforals.ca" button on my coat. Instead of the usual blank look I get around here, I got smiles and offers of help. I think that it was directly related to your interview. As others have said, you're an inspiration to all of us, thank you!

Also, thanks for the invitation for a place to stay on my drive to Victoria. This last trip was pretty rushed and I was in a hurry to beat the snowstorm on the way home so I didn't have time to stop. My wife and I are going to come back out in early April to pick up Andrew from UVIC and would like to stop in to see you for coffee or tea. Let me know if that works for you.
Barry
 

joelc

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Of course that will work! We would love to have you drop in.
 

Zaphoon

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You guys are extraordinary role models! What an encouraging write-up! Well done!
 
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