Whitehorse Daily Star

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Photo by Vince Fedoroff

LEARNING TO COPE – Charlie Roots, 58, uses a neck brace, headset and voice recognition software at his workplace to make up for the practical inability to use his arms and hands due to ALS, which he was diagnosed with last year. Roots is one of two individuals in the Yukon currently suffering from the affliction.

Geologist traversed Yukon by bike, canoe before diagnosis

In May of 1992, Charlie Roots and a small team of government experts summited Mount Logan to gauge to a decimal point the height of Canada’s tallest mountain.

By Christopher Reynolds on August 29, 2014

In May of 1992, Charlie Roots and a small team of government experts summited Mount Logan to gauge to a decimal point the height of Canada’s tallest mountain.

Part of the first expedition to define Logan’s magnitude by the metre, Roots spent weeks traversing its plateaus on skis and climbing its faces with crampons and ice axe.

“For me, it was the best kind of life. Looking for rocks, walking out on ridge tops,” Roots said.

He and his colleagues from Parks Canada and the Canadian Geographic Society hauled sleds bearing heavy data-collection instruments — and gel-cells the size and weight of car batteries to power them — the whole way.

The journey took one month total, including a final eight-kilometre push through wind and whiteouts to reach the snow cone summit 6,000 metres above sea level.

Roots, now 58, still works as a research geologist with the Geological Survey of Canada after more than two decades, but has not crested any mountains recently, psychological ones excepted.

The former marathon runner and bedrock mapper has been living with ALS for more than four years.

“I have been lucky,” he said in an interview this week.

“For many, ALS starts in the feet, like tripping over things, or in the throat with difficulty swallowing and slurring of speech.

“I have been spared these.”

The condition affects only his trunk and upper limbs, making relatively light tasks like typing and cooking virtually impossible.

“To live with the disease is an ever-steepening ramp of physical difficulty,” Roots reflected in his soft baritone. "You just are becoming increasingly imprisoned physically."

He first recognized a loss of muscle strength in June 2010. In April 2011, he enjoyed his last “vigorous” use of a canoe paddle.

An avid outdoorsman, Roots had accepted by the end of 2012 that cycling and skiing were unsafe, due to the difficulty of squeezing the brakes, holding the handlebars steady and gripping the poles, as well as managing a fall in either activity.

March 2013 saw Roots drive a car for the last time, as turning the steering wheel and fastening the seatbelt were too big a challenge.

As of the past spring, dressing himself was unfeasible.

About two months ago, Roots stopped being able to raise a spoon above the dish.

“I train my focus on what I can still accomplish,” he said. “I have become a veteran of frustrating moments, more tolerant and patient with myself.

“As I can see my end more clearly than most people can see theirs, I focus on being positive and completing things simply. It is a very clarifying state of mind,” he said.

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a degenerative condition that affects motor neurons in the brain stem and spinal cord, leading eventually to paralysis of voluntary muscles. Thus far, it is incurable.

The recent social media frenzy over the ice bucket challenge, a viral campaign to raise money and awareness for ALS by dumping cold water over one’s head on camera, has drawn unprecedented attention to the affliction.

“Any publicity is good publicity,” Roots told the Star.

He pointed out that only about 3,000 people in Canada suffer from the disease. “But I’d say that it’s a good route to raise awareness about this.”

Roots is one of two Whitehorse residents diagnosed with a condition that, according to the U.S.’s ALS Association, afflicts two out of every 100,000.

While about 10 per cent of cases are genetic, most emerge from causes unknown and tend to strike active males in their late 50s.

That includes Roots.

“Once I was strong. From when I was 12 until 55, I could raise an empty 45-gallon drum over my head, or pick up a canoe to portage with a clean-and-jerk,” he said.

“Now I can no longer ... hold a sheet of paper by pinching it.”

Over the last 15 years, Roots revelled in physical activity, sojourning with his family on multi-day canoe trips down the Spatsizi, Takhini, Yukon, Swift, Rancheria, “and secret rivers too — plus ones you should never go down.”

Over the years, his annual field work led him by foot across a broad strip of central Yukon, mapping bedrock from the Alaska-Yukon border north of the Yukon River right across and into the Northwest Territories, among other areas.

Raised in the Gatineau hills north of Ottawa, Roots first came to the territory in 1966 with his father, a high-ranking government scientist who worked with Monty Alford, the late renowned mountaineer and surveyor, to organize expeditions in the St. Elias range as part of Canada’s centennial celebrations in 1967.

“I was just a little gaffer messing around Kluane Lake,” he recalled. “I got to run up and down the mountains — Sheep Mountain, Outpost Mountain — at age 10.”

An alumnus of the Ivy League Dartmouth College as well as Carleton University, where he earned his Master’s and PhD, Roots returned to the Yukon periodically for grassroots exploration as part of his graduate work throughout the 1980s.

“It’s crashing through the bush, living in tents ... I love that combination of physical challenge and mental conundrums, trying to solve things,” he said.

On one of those trips, Roots met his wife, Mary Ann Annable-Roots, a longtime dance instructor who currently works at a Montessori preschool, but at the time had signed on as a cook for a geological foray.

The couple have two children together: 18-year-old Galena, who recently graduated from F.H. Collins Secondary School and bears a name that also denotes a type of mineral ("in Spanish it means little chicken, which is good when they're small but they don't like it when they get bigger"); and 21-year-old Logan, who trains in Victoria as a middle-distance runner. (That chip off the old block won the Yukon River Trail Marathon by more than 10 minutes earlier this month, finishing in two hours, 50 minutes and 49 seconds.)

“Mary Ann went through quite a long period of anticipatory grief, thinking what’s ahead,” Roots said of the period between 2011 and January 2013, when he was finally diagnosed after tests ruled out other possible conditions.

"I think at first with our kids, you're the same old dad: 'We're teenagers, he's just getting old and doddery' kind of thing.

“I don’t think it really became truth to them until they actually went on a website and found out what ALS was, after I said, ‘That what I have.’

“The progression is slow,” he continued, “unlike with a lot of diseases, where it’s like a colossal brick wall.

"Living with ALS is constantly adapting to not doing what you once did — that’s not just years ago, but last week.”

When he first underwent tests, Roots lifted weights and ran exercises almost daily to prove to himself and others the diagnosis was not imminent. Despite the efforts and frequent IV injections, his condition did not improve.

"When diagnosed, I felt the music of my life ceasing, and I rarely hear tunes in my head anymore," he said.

Roots hasn’t been able to write legibly for two years, nor read comfortably. The muscle power necessary to hold his head up and turn the pages over a sustained period of time has weakened considerably.

“Because I loved to draw and make maps and read avidly, loss of these pleasures is a great pity,” he noted.

The resultant sense of vulnerability and dependence is difficult.

“As a healthy male, I thought I could take care of myself. No longer.”

He walks at all times with a soft helmet in case of a fall, which he could not break due to the weakness of his arms.

“I am a disaster waiting to happen.”

His colleagues in the Elijah Smith Building keep an eye out for him.

“If I’m struggling to get a book back on the book shelf or being spastic with my coat at the end of the day, they just come by and pull it on or put the book back on the shelf.

“It’s horrible to feel dependent,” he said, tears entering his eyes only when describing how his condition affects others. “It’s funny, I still get emotional about it ... I just try and fit in with the least amount of change in their own routine.”

Roots is unable to extract a wallet from his pocket, or even a card from his wallet or a bank machine, rendering him “commercially inept,” he said.

Meanwhile, the atrophy of his muscles due to a lack of motor-neuron control means less upper body insulation and hands that are almost always cold.

"I miss the physical joy of strong muscle contraction. For now my muscles are mostly flaccid — that's what paralysis is."

Because there is no known cure, Roots sees neurologists less frequently than in the lead-up to his diagnosis. He expects he’ll receive home care as his condition becomes more severe in future years.

“Anticipation of the end is....” he said, trailing off.

“Most people don’t know where their lives are going to go or how long they’re going to live, and when I accept that this is what’s going to happen to me, I have the opportunity to make much better decisions on how I spend my time, do some clearer thinking about what’s important,” he said, his voice breaking slightly.

“That’s one side, and the other is that you see humanity a different way, that I’m no longer superior or immortal, but instead when I see someone in a wheelchair or disabled, that’s me.

"I feel my cognitive ability remains strong but I ride an emotional roller coaster: feelings are more labile; tears well up unexpectedly," Roots said.

"Although the end is nearing and probably unpleasant, I look upon it as inevitable and I'm proud of what I've been able to accomplish since learning my fate. Not many are given that foreknowledge."

Comments (37)

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Pat Egerszegi, Montreal on Jan 26, 2018 at 1:03 pm

I was reminiscing about the "good old days" with my daughter last night and wanted to look you up dear Charlie... only to find out that I am way too late!

I would just like to send you, through the outdoors, nature and cosmos that you liked so much, a message:

Dear Charlie, what wonderful memories I have of when we met skiing at Camp Fortune. You, yours sibs and I went jumping around on the log booms on the Gatineau, we played hide and seek all dressed up in costumes in your great big house, we jumped off cliffs into a lake and Fanny gave me the Narnia series to read. I remember the story of when your mom made maple sirup in a pressure cooker that exploded and the lid made a dent in the floor in Fanny's room - and June spent hours cleaning up. I remember your smile and good mood at all times. I remember how enthusiastic you always were and ready to do all kinds of active, interesting things. I remember the cross-country skiing.

How I would have loved to talk to you again and to catch up on all the years since then.

Just would like you to know that I am thinking of you and that my thoughts are with not only with you and your family that I used to know, but also with your wife and children.

Rest in peace dear friend!

Pat

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Ian Brogden on Mar 27, 2017 at 6:58 am

Charlie pretty much single handedly started cross country ski racing at our high school. I was there about 8 years later, but he was still a topic of conversation. My parents knew the Roots family from when we lived in Ottawa, so influenced them (positively), no doubt one of the reasons for me going to TCS.
I was inspired this year to enter the Death Ride Tour VII for ALS research (http://www.deathridetour.com/index.php), trying to give back in some way.

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Richard Wilson on Feb 26, 2017 at 2:52 pm

Charlie and I were at high school together and we both lived in the Ottawa area. He was always positive and upbeat. We had many interesting conversations while on the train back and forth to school. He helped me to refine my cross country techniques as we went through the fields at school or the Pat Moss camp forests. This has been a life skill I have used every winter since and am eternally grateful. This world was a better place for him being in it, and I am better for having known him.

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Robert Hildebrand on May 27, 2016 at 1:29 pm

Since the early 80's when we met, we've had some great times. Thanks for those and thanks also for helping me with reviews the past few years. I'm proud to call you my friend.

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Paul, Karen, Nathalie and Lauren Vogel on Jan 1, 2016 at 1:39 pm

Dear Charlie, Not sure if this letter will reach you or your family. The last we saw of you was on the Ferry coming from Victoria, or was it going to Victoria? You knew then you had ALS and that tough times were ahead for you. The other writers have said it, you are still the strongest one now facing challenges that no one should have to. I hope this finds you with family, enjoying their company and laughter. Know that our thoughts are with you and your family of our time together in Atlin and Whitehorse.
Paul and family.

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Denis Walsh on Aug 25, 2015 at 7:43 am

Charlie. Hope you're in good spirits. CSM will be 50 in 2016. I plan to enter, I haven't really started training yet. I will dedicate every kilometer i do to you buddy.

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BAC Rudolf on Mar 13, 2015 at 8:38 am

Dear Charlie, just be strong....at the end of the rainbow .
Pls. pass on my address to mary ann, I lost contact 20 years ago.... Its time to say hello. bac.rudolf@gmx.at
Rudolf

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Bac Rudolf on Mar 3, 2015 at 12:28 pm

Dear Charlie, you don't know me, but I know you almost more than 30 years. I was in Canada 1987 and Mary Ann gave us shelter (Calgary) in this time. I was always far a way (physically) but my thoughts have been with your family and I was wondering how your family life was processing.
You've got the best wife in the world ... and you deserve it.
I am so sorry about the latest news .
Rudolf from Austria

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Pam Spencer on Dec 17, 2014 at 1:17 am

Charlie, I don't know if you remember me but I have very fond loving memories of you. I was just talking to a friend of mine about you and I decided to google your name. I was telling her how you encouraged me to embrace my hearing loss. You accepted me for who I was and showed me the spirit of the wilderness. I have embraced both in my life. I am now an audiologist and I help others accept their hearing loss and assist them in moving forward in caring for their hearing needs so that they can continue to enjoy life as best as they can. As you can tell I am very passionate about what I do. I recently tumbled down a few mountains going through a difficult divorce and with my father passing away. But I decided to turn my spirits around and went to Africa and climbed Kilimanjaro last August. It was you who took me up Mount Temple (the first mountain I ever climbed) and showed me the joy and amazement of being there. I am so grateful for the things that you showed me, the way of the wilderness, your letters, the times that I had with you as they filled my life in many ways.
I was surprised and dismayed to read your story tonight. The previous story I heard was your amazing climb up Mt. Logan which I read about in the Canadian Geographic. My family still has the copy of that journal at the cottage! I suspect that now this is the hardest mountain that you are climbing. Your strength was always your inner strength and that is what you passed on to me and continue to pass on to me. I am so thankful that your wife and family are surrounding you with love. I know that your own family is there every step of the way. My spirit is with you too. With love, Pam

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Sandy Barham on Nov 18, 2014 at 1:48 pm

Charlie, have only run into you a few times since Carleton, but always relished the opportunity. You are a model of a life well - lived. Few of us deserve the warmth exuded here.

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Jay Gilbert on Nov 7, 2014 at 8:01 pm

Hi Charlie! I met you in the late 1970s when I was your sister Jane's roommate at Bishop's in the Eastern townships. Jane always spoke of you with such reverence and as an adoring younger sister. It's obvious that the Roots family is resplendent with character and determination. I have hit my proverbial karmic prayer mat for you and the Roots family. Jay Gilbert

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Renee Hetherington and Bob Thompson on Nov 5, 2014 at 6:17 pm

Hey Charlie and Mary-Anne....we love you! Some things don't change. xox

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Phillip Moore..friend of Mike C. on Oct 14, 2014 at 10:25 am

Dear Charlie and Marianne, Meeting you both was a highlight of Mike's and my trip to the Yukon and Alaska. You are both such wonderful people with great attitudes and loving connection with others. I felt like I had known you guys for years. I send you loving wishes and joy in your lives. I am twenty years HIV+ and my life genuinely changed for the better when I came to understand my mortality. Every day was more important and real connection with others my most enjoyable recreation.
Your friend in Oregon, Phillip Moore

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Molly Lawson Mulloy on Sep 26, 2014 at 12:36 pm

Charlie,
You were my flaming-haired childhood hero, inspiring me to cheerily persist when utterly exhausted, to put one foot in front of the other when I thought I could go no further, to encourage others to do the same, to sing songs and laugh at your jokes, revel in the starry nights, leap on toboggans to careen down the steep hill toward the Gatineau River, ..... Oh, how we Lawsons looked forward to our Roots New Years' feasts and cross country ski adventures!
You are my hero now, as you travel so courageously along your ALS journey. Your fortitude is extra, extra-ordinary! You are a guiding light, sharing with typical Charlie enthusiasm and the wisdom of a sage what you have learned. You are an inspiration!
Mom, Dad and I were blessed to have been able to reconnect with you and to get to know your beloved Mary Anne a bit on their 'swan song' epic trip across our great country a few years ago. I wish I could have helped you with your cold finger problem.
Your life has shone light on so many others'. Your vivacious spirit has infected many of us, helping us tackle our own challenging journeys. You will always be my favourite TCS 'brother'.
Blessings and daily prayers to you and Mary Anne,
Molly

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Tom and Pat Lawson on Sep 25, 2014 at 12:23 pm

When you scared hell out of us leading my 10 year old son Phil over the lakes and woods of Gatineau Park in the dark at 10 below to get to the family home, you taught us all a lesson about tenacity. Great to see you still doing it, Charlie. We send our best vibes to help you through your latest challenge. Carpe Deum!

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Shawna on Sep 24, 2014 at 8:19 pm

Thank you for sharing your story. Clearly, you are an inspiration to many, with your optimism and strength. My family and I send all our best wishes from Alberta. Keep on, keeping on. xo

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Sylvia Arnold on Sep 24, 2014 at 4:29 pm

Charlie, you were always way ahead of us younger kids back in the Gatineau days. I remember then marvelling at your bushwhacking skills and marvel now at how you are navigating this very tough terrain.

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Lynn Pigage on Sep 19, 2014 at 10:13 am

Charlie, thank you for sharing your story and may God bless you and your family. I know that Lee Pigage, my husband, enjoyed working with you. I marveled at your endurance.

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Helen Butler on Sep 16, 2014 at 8:21 am

Hi Charlie, although I didn't get to share first hand your antics and adventures on Logan, Karl shared your exploits with me, and it was so enjoyable with you on the team. I know Karl, as I do too, sends you thoughts of physical and spiritual strength. Big hug, from Helen.

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Tina Arnold on Sep 9, 2014 at 7:08 am

Always intrepid Charlie, - whether on the ski trails, in the mountains or facing ALS. Thinking of you and sending best wishes.

Up 5 Down 1

Gunvor Arnold on Sep 7, 2014 at 3:38 pm

I preciate your frank coments, I have been thinking of you and your family.Thank you, Charlie.
Gunvor Arnold.

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Elisabeth Arnold on Sep 6, 2014 at 7:51 am

Thank you Charlie, for your brave and honest comments. You and your family are surely an inspiration to others trying to cope with ALS, and other challenges that life throws at us. Very best wishes, Elisabeth Arnold

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Al (B.J.) Bjorn on Sep 6, 2014 at 7:45 am

I share fond memories of you as a member of the successful '92 Logan expedition. It was nice to be hooked on the same rope with a big, powerful guy like you, as I recall, we sure made it down the King Trench in one hell of a hurry during our decent ! I remember doing the "ice bucket challenge" with you and the other members of the team - taking snow baths on the glacier during the weeks and weeks we were on Logan. You were an inspiration to me then and you are an inspiration to me now to read your heartfelt thought about ALS. Charge on Charlie!

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Meriel Bradford on Sep 5, 2014 at 7:15 pm

Dear Charlie,

We are all mortal, but facing our own mortality takes courage and grace, both of which you have shown us all. Thank you for accepting to do this article.

You and Mary Ann are in our prayers,

Meriel and Jim

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Mike Schmidt on Sep 5, 2014 at 1:06 pm

Charlie you have been an inspiration to many of us for many years, dare I say decades (it has been almost 5) - whether XC ski racing on heavy touring skis and keeping pace with those of us on the lightest skis available, bashing through the trees of the Gatineau Hills with your sisters and friends in tow, climbing peaks in the Adirondacks and as a colleague with passion and energy for geology (in the wide sense of the term) and especially your passion for passing this on to students and the public which knows no bounds. On Logan you provided enthusiastic support when the project was still at the embryonic stage and we were trying to get the project off the ground and this continued all the way to the summit - hauling 12V batteries, GPS receivers and pounds of food got us there and back down. See you on the deck real soon!

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mary jane lawson on Sep 4, 2014 at 10:00 pm

Your strength and bravery becomes ever more apparent to us as you describe to us how you have to cope with the ravages of ALS- Thank you for sharing the inspiring story of your journey.

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Joyce Majiski on Sep 4, 2014 at 4:42 pm

Hey Charlie, you are an amazing person, always have been. I admire your honesty and vulnerability and the lessons you are allowing us the privilege to learn along your journey. I will always see you as the mountain man that you are. I am glad to know you.

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Sylvie Binette on Sep 3, 2014 at 9:27 pm

What a beautiful and touching article with a sensitivity and outlook that is well known of you Charlie. Your spirit and determination amaze me and us and as always.Thanks for sharing.

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David Mosher on Sep 3, 2014 at 5:12 pm

Charlie,
I hope our small efforts with the ALS ice bucket challenge at the North Pole raise awareness and a bit of money. Thanks for your story which makes it real for us so far away... from the "Louis", now at 88deg north.

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Bev Vanlier/Helen Tucker on Sep 2, 2014 at 12:51 pm

I (Bev) worked at the GSC and always looked forward to receiving Charlies Current Research articles and his visits to Vancouver for Roundups and other meetings. My sister Helen also remembers his and Mary Anns visit to our home and the great time talking Barbies with Mary Anne. Charlies love for the Yukon, the outdoors, and his family was inspiring. Helen and I send our love and blessings to you.

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Le'Anne Frieday on Sep 2, 2014 at 4:52 am

I was the project manager for the Geological Survey of Canada's 150th Anniversary in 1992 and the Mount Logan Expedition was the high point (pun intended) of our year's activities. My thoughts and prayers go out to Charlie and his family.

Up 14 Down 0

Christy Vodden on Sep 1, 2014 at 6:15 pm

Bless you Charlie for being such an amazing person and for sharing so many profound thoughts. You are making a different sort of map to help others understand your very difficult journey.

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Pat Morrow on Sep 1, 2014 at 3:27 pm

Charlie, you were the strongest member of our team on Logan in '92, and at this juncture of life, you're still strong, but in ways unimaginable. You're an inspiration to us all!

Up 22 Down 5

Karen Walker on Aug 30, 2014 at 10:47 am

I hope everyone who is dissing the ALS Ice-Bucket Challenge and otherwise trying to discredit fundraising efforts for ALS will read this.

Up 27 Down 0

David David on Aug 29, 2014 at 10:02 pm

To not hear tunes is so sad - but you write tunes for us. And you're still drawing maps. Your word maps guide us to treasure and they are widely appreciated. Thank you for the maps.

Up 28 Down 0

Dave DownUnder on Aug 29, 2014 at 6:27 pm

Just putting this here so I can give him a thumbs up

Up 39 Down 0

Mike McCann on Aug 29, 2014 at 4:41 pm

A wonderfully sensitive article and Charlie ... you are an inspiration - bravo

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