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Skiing During a MS Relapse

Adventures of a brave ski mom trying to show her kids that everything is okay when sometimes it isn’t

By Andrea Koehle Jones

skiing

Vancouver, BC — 12/07/2016 —  I think that being a ski mom takes a lot of energy and bravery. I’ve always been brave but energy, now that’s been my challenge for more than 20 years. Last March, I was diagnosed with relapsing-remitting multiple sclerosis (RRMS).

This form of MS comes and goes unpredictably.  It is a major neurological disease that has explained my energy crisis that causes a complete and relentless exhaustion I can’t explain to anyone who doesn’t have MS. My MRI shows so many lesions in my brain and on my spinal cord that my neurologists say I have been living with the disease for more than 20 years.

Anyone who knows me knows that I ‘live in the clouds’ plus I’m not one to complain, so I feel somewhat responsible for the delay in my diagnosis. I guess I wasn’t ready to know.

I have coped over the years by developing hacks, downplaying my symptoms and focussing on the positive.  I mainlined sugar to give me the energy I needed to accomplish all the things I want to accomplish in this lifetime. Since my diagnosis, I’ve kept my chin up with my usual tremendous optimism, determined hopefulness and my life-long ‘suck it up buttercup’ attitude.

The mountains were calling…

I inherited my optimism from my Dad and then evolved it to new heights.  He now calls himself a realist in comparison to my spectacular optimism. He is the one who taught me to ski at Talisman Mountain Resort when I was five and later at Devil’s Glen. I grew up in a ski family. My parents met skiing in the 1950s at The High Park YMCA Ski Club. My mom was the secretary and my dad was the president of the High Park YMCA Ski Club. He was also the president of The Southern Ontario Ski Zone of the Canadian Ski Association and a member of The Canadian Ski Patrol in Ontario.

My husband Dave and I met 20 years ago working as journalists in the CBC TV newsroom in Toronto. A love for skiing was something we both shared. So when we moved to Vancouver it seemed natural to get engaged on top of Cypress Mountain after a terrific day of skiing. Today my kids race for the Cypress Ski Team and I am on the board in charge of racer recruitment. Our home even looks across the ocean to Cypress Mountain.

Dave’s mom skied at Cypress Mountain as a teen and his father was a member of The Canadian Ski Patrol in British Columbia so clearly my kids have skiing in their blood too.

47a6da30b3127cce9854961e7ae400000030100bauwbfy2zs9I love being a ski mom. I became a ski mom the first time my kids skied at Blackcomb Mountain in Whistler. My son was four and my daughter two. I drove the VW van between two parking lots on Blackcomb Mountain and Dave skied down the mountain taking turns with each child on the ski runs between the two lots. We thought the chairlift would be too much for their first time. The next winter, Dave and I taught them to ski at Big White and later enrolled them in lessons – the rest is history. Our family has been skiing ever since. Today the kids train four times a week taking a ferry from our home on an island off the coast of Vancouver to get to Cypress Mountain, home of the 2010 Winter Olympics.

A ski mom is expected to drive to and from the hill for training, from mountain to mountain for races, she hauls equipment, get the kids to do homework in the car on the way to the mountain, carries chapstick, energy bars and first aid supplies… everything for any mountain situation. And is always there to provide encouragement after disappointing races or crashes.

Ski moms also volunteer for the club. In addition to being on the board, I have trained as an Alpine Canada race official and slipped race courses, been a gate judge and a scoreboard keeper at races including The Whistler Cup, The Hub International Nancy Greene Festival at Sun Peaks and several races at Cypress Mountain.

If you aren’t crashing, you aren’t skiing

Everything finally unravelled in November 2015. I took my children to their first ski training camp of the season . It just so happened it coincided with a final push to write 50,000 words in one month for my novel project. The Hummingbird Trees is a young adult dystopian story about a world threatened by climate change and a young empath with a special connection to trees who could change everything. I had been working on it for several years and November 30, 2015 was the goal I had set to complete the draft. As a former CBC Newsworld and Newsworld International writer and producer I am great at meeting  deadlines – at all costs, so of course, I met my deadline. I successfully navigated the kids through two training camps at Sun Peaks, in the British Columbia interior. I got them geared-up and on the hill, attended all of their daily ski video sessions and skied so they saw me on the hill too.

Moments after finishing the latest draft of my book on November 30, 2015 I first felt the numbness in my hand. For weeks afterwards, I told myself it was from the long drive home from Sun Peaks or a pinched nerve from lugging ski gear or the hours spent writing on my laptop. I saw a GP who said I simply needed a massage!!?!

One month later, the numbness spread up my left arm down my left side and across my chest and abdomen. By this time I was in Europe travelling to visit my brother and family in France and skiing through Switzerland. I was not going to let a strange numbness or fatigue stop me from skiing with my family in a once in a lifetime trip to the Alps.

My three favourite doctors, my brother, my sister-in-law and my father-in-law on my return to Canada suggested I get a second opinion. The MRI was ordered but was six months away so I paid for a private MRI. The results were shocking and life-changing.

Eventually the numbness receded only to my left hand. It has now been over a year that my left hand has been numb and nothing reverses it so I type with one hand and I’m not great at tiny motor skill tasks but I still can do a lot and I’m grateful for that.

It is not the mountain we conquer but ourselves

Like so many of you, I have struggles everyday. I live with uncertainty, dealing with a major neurological illness, on top of several other challenging medical issues. This fall I suffered another major relapse that affected my swallowing and led to a chronic cough and a month of vomiting  (lovely!) plus two rounds of aspiration pneumonia. It felt like someone had their hand around my neck strangling me. This was very frightening but I carried on with everything hoping it would go away. It didn’t. In early December I finally received three days of high-powered IV steroids at Lions Gate Hospital and those symptoms immediately resolved. I was so happy that all I wanted to do was run away and go skiing. I believe there is healing in nature, in the trees and the mountains that surround all of us. My kids had their first training camp of the season scheduled for Sun Peaks that week and I wanted them to see me on skis so they wouldn’t worry about me any more and they could get on with their life.

“Any life-changing event also changes your relationships. It isn’t just you who has to learn to adapt; everyone else has to learn to deal with the new normal,” Ann Romney, diagnosed with RRMS in 1998.

dsc_0561Dave and the kids have been very upset since my diagnosis. I explain to them often that they never knew me without the disease but my daughter says it is hard to know and she wishes we didn’t know. She regularly asks to miss school to stay by my side at home or at the hospital. This is a kid who previously loved school. And my son has grown-up a lot this year. He used to think I was magical and could do anything. Now he knows I can’t. Even though the cause of MS is unknown I worry for my kids and am doing everything to keep them healthy, active and outside as much as possible even here on our rainy coast – hence skiing.

Skiing is a dance, and the mountain always leads

I was determined to ski last weekend and I did. Mostly to show Dave and the kids that I’m okay. I was upset because I had to take a few breaks on the way down because I was feeling so poorly but Dave reminded me that that was because I was skiing during a relapse at the same time as I was coming off steroids.  It wasn’t until later that night that I wondered if it is okay to do strenuous exercise during a relapse.

12719155_10207410074463517_262672293347911523_o-1The thing is that when you get diagnosed, nobody tells you much. You don’t even get a pamphlet or a session with a nurse to offer practical advice. Anyways all that means you are very much on your own to advocate for yourself. I am very lucky to have Dave and my brothers to help me but I have still spent a lot of time with Dr. Google trying to figure things out. There were no articles about skiing during a relapse and some articles that said you shouldn’t do strenuous exercise during a relapse or you can worsen your symptoms. Any time I ask my neurologist questions like this he just says: “Live your life.” I find this unsettling, like he is saying “…while you can.” I’m sure he doesn’t mean it that way but still.

A MS diagnosis can be isolating too. Even though Canada has the highest rate of multiple sclerosis in the world and I live in the part of the country with the most cases of MS, I have yet to meet someone with RRMS. I am sure she is out there – my RRMS soulmate, similar in age and disease so we could compare symptoms and encourage each other. I’m sure I’ll meet her one day soon because my life is like that.

I always heard that my mother’s youngest cousin had MS. I only saw her a handful of times in my life but she was someone I instantly liked. Smart, beautiful, funny and full of life. Today she is vibrant in her early 70s – she gives me hope.

They say MS is a different disease for everyone because of where their lesions are located. For me, symptoms of my disease didn’t appear suddenly but looking back it is clear I experienced major relapses  in my 20s, possibly late teens and after my children were born and since then. Over the years my symptoms were tenuous and easily dismissed. In addition to the fatigue, there were several rounds of vertigo, MS Hugs (a scary symptom of MS where you feel as if you have a tight band around your chest or ribs or making it difficult to breathe), occasional numbness and weakness,  sometimes I would trip, and then there were the crashes on the ski hill resulting in three serious concussions in two years as I tried to keep up with my kids on jumps and boxes in the terrain park and even racing the occasional slalom gates for fun once the kids cleared the course. They have since banned me from the terrain parks.

My diagnosis came months after my Mom’s lengthy illness and death. She never knew I had MS. I feel sad that she didn’t know because then she could have cheered me up about it and do all the things good moms do when you are sick but that was not meant to be for me.

Special thanks to my dear friend who has the type of wisdom that only having a child with incurable cancer can manifest. She told me I have this disease for a reason, and that as a writer, I should consider writing to raise awareness about MS or to help find a cure for MS.

Honestly the last thing I want to do is write about MS. I don’t like to show vulnerability and I spend my life diverting attention from myself to Dave, my kids and my cause which until now has been environmental education, getting kids outside and  and connecting with nature by running a children’s charity, partnering in a world-changing venture capital firm and and writing children’s books.

One of the first things I did once diagnosed was work with my Dad and The Koehle Family Foundation to help other people get diagnosed sooner by supporting a UBC research project identifying prodromal signs of multiple sclerosis. I’m a cause-driven girl and knowing that I can be part of helping someone else, helps me immeasurably. When people are diagnosed early with RRMS they can take medications to slow the progression of the disease and lessen the number of relapses and resulting damage. I am still searching for an appropriate medication that my body can tolerate.

That said, I’m big on authenticity. I think if we only have one life we should live it as truly and bravely as possible – so this is me, right now.

Live. Breathe. Ski.

These days I drink a lot of green shakes, exercise when I can, rest lots, live in the moment, and I’m learning to say no to anyone or anything that stresses me. I also incorporate gratitude, prayer and meditation into my life – although I always did that. All I want to do in this life is complete The Hummingbird Trees, find a great agent and a great publisher and have the book reach and inspire sensitive children around the world — otherwise I plan to carry on helping the world with my causes, focusing on reversing my MS and spending time with those I love most – and ski!

12238334_10206476715210119_9104137653102408429_o

So, there you have it.  Please don’t send me MS articles, I already read them. If you feel anything for me, let it be hope, happiness and gratitude and please include me, my family and anyone struggling anywhere in your prayers.  Hope, happiness and gratitude are my guiding life principles and I want to share them with all of you each and every day. I am hopeful, happy and grateful for my life just as it is – all of it and especially my super-supportive husband and darling children, my father, my brothers, my family, friends and supporters.

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