Elisabeth Kasilingam, Managing Director – European MS Platform:

4 days, “Empowerment through adventures”… what was I expecting?

Nature, hiking, meeting new people and especially a group of people with MS, Parkinson’s or other chronic disorders. And, I forgot the most important, meeting up with Lori again! Lori has been such a great inspiration for the MS Community and has supported EMSP’s advocacy work during the past years. I could not miss this opportunity. In a nutshell, I was expecting an exciting trip with stories to tell (who would say no to helicopter rides, right?!).

This trip was way above my expectations, it was a wonderful refreshing learning journey!

We tend to forget most basic things when overwhelmed by our daily realities. We tend to seek for solutions far away when they are at our reach.

 

The “Bear talk”

Every day during our hikes, we would be given the “Bear talks” by the guides.
It consists in instructions on what to do if we “meet” a bear: how to react, how to assess the “stress level” of the animal, do not panic, do not run… We heard that so often, that we ended up thinking there is a bear behind every tree. It was quite disappointing that we did not get to meet one. Are there any bears there, after all?

I can’t help but relate this to MS which is an unpredictable, and in most cases, an invisible disease. The first time one hears about MS, you can only imagine what it could be, and of course, expect the worst-case scenario. But wait a second… and what if, it does not go that far? What if, you are not experiencing any symptoms today?

One day at a time; today, you can do it.

Despite the signs, we cannot spend our time hiding and waiting for the bear. We know it’s out there. The walk on a mountain ridge, the colorful fields of wild flowers, the refreshing wind blowing in your face, it’s all worth the risk of encountering the bear.

And here comes the “empowerment” part: how to overcome the fear? What is the secret to go ahead against the given odds? In addition to be prepared, it is also useful to have the right support around you: a positive mind, friends, family, carers, any stranger with whom you would connect and share your anxiety will do.

The flow of energy that will make you believe in yourself will keep you going, even when the motivation would get down. It will push you to reach beyond your limits.

I had the chance to witness all those people affected by MS or other chronic diseases deciding for themselves what are their limits on a daily basis: understanding them and work around them. It’s not easy but remember: we should enjoy the present more than anything else because today we are strong!

I wish that you will get inspired by the stories from the amazing people who shared their experience and would like to take this opportunity to thank again Lori for this empowering initiative and every member of the group who was there to mutually support each other.

Lori Schneider, Empowerment Through Adventure-Trip Organizer~MS Hiker:

 

 

Sometimes in life EVENTS change you. For me that life-altering moment was the day I woke up with half of my body numb and the doctors told me that I had MS. My life changed, as well as my outlook on life. After a year of grieving the diagnosis, I took back my personal power through exercise, and ten years later I stood on top of the world, Mount Everest, holding a flag for the first ever on World MS Day. That event changed me, because I realized that through sheer determination and some adaptations, I could still dream big and enjoy many of the things that were important to me in life.

Neil and Lori Schneider

Sometimes in life PEOPLE change you. As I came to terms with my diagnosis, I knew that it was time to share that message of empowerment with others who may be struggling to make sense of a diagnosis that often seems to define them.

I organized the Bugaboo helicopter-hiking trip, to remind us all that our power comes from within. Each member worked together as a team, helping one another change perceptions of our diseases and limitations, as we encouraged, shared our experiences, and learned from one another. We began to define ourselves by our strengths and not our weaknesses. I was honored to be joined once again by my 85 year old father Neal Schneider, who reinforced the notion that our strength lies within.

Sometimes in life WE change ourselves. We returned from an event that changed the lives of so many on our Bugaboo adventure. Helicopter hiking in this isolated environment with our unique group of strong-minded individuals, created some bonds that we could not have imagined. Friendships formed, support groups emerged, kindness flowed, and hugs appeared at any given moment in time, reminding us all that we were not alone.

Now that we have returned home many of us feel a loss, as if we went away to summer camp and are missing our new friends. The good news is that we have formed a lifelong support group, connecting us on a deeper level. The world gives us opportunities to help, be helped, live fully, and understand our abilities, and this journey did all of those things for us. We changed, we grew, and we empowered ourselves to reach beyond our perceived limitations.

 

April Winckler ~ MS Hiker, Pat Winckler ~ Husband & Support Hiker:

 

Pat and April Winckler

My name is April and I have multiple sclerosis. I am 33 years old. I was diagnosed in 2010 after experiencing many health issues, which forced me to leave my job as a school custodian. At times, MS has robbed me of motor control, vision, cognitive and bodily functions, and mobility. It often leaves me with a body and spirit that feels fragile and broken. At times I lose hope that life will ever feel normal again.

After years of taking care of myself and contributing to our family income, I was left unable to work due to extreme fatigue and MS issues. My symptoms worsened and my self-esteem slowly started to slip away. In December of 2014, I spent Christmas in the hospital. My health deteriorated to such an extent that I was placed on a feeding tube to get nourishment into my failing body. One tube attempt turned into many, each very frightening. The first feeding tubes were placed through my nose into my intestines, causing terrible pain and discomfort. Later, a tube was surgically placed into my stomach, but my body rejected it. The doctors told me I could choose hospice or choose to live. I told myself I was too young to die. I am choosing to live! I am trying to take back control of my life and have developed a daily routine of stretching, mental exercises, self-care, and spiritual care. I am getting stronger every day and I am ready to live once again!

Recently, I was given an opportunity not only to live, but also to soar. I was invited to join the helicopter-hiking trip, high in the Bugaboo Mountains of Canada. The trip was designed especially for people with neurological disabilities. We were given a chance to walk at our own pace, rest when we needed to, be around others who understood, and most importantly, feel whole again. My husband Pat accompanied me on this trip, so he was there to help manage my medications and assist with mobility issues.

When asked what the most challenging thing I had to overcome on the trip, my answer was fear. Facing fears of getting out. Fear of being sick in a place I was unsure of and cost of care if needed. Fear of bowel problems, difficulty staying focused when very tired. Fear…. it helps me to not think much about the trip till I get there, so I have less expectations to meet or be let down by, and less generating of problems that may or may not occur.

Adventures have a way of reminding me life is a breath of fresh air, not endless, suffocating pain and fatigue. Isolation at home reinforces this feeling of endlessness for me. The trip helped me learn that I am not alone!

 

Group of hikers, Bugaboos 2017

 

I was diagnosed with MS in 2010 and like many people, entered a tumultuous year of uncertainty and fear. In July 2011, I joined the Leap of Faith Kilimanjaro MS/PD climb with Lori Schneider. That climb changed my life. I saw people with worse and better MS than myself, diagnosed for longer and shorter times. Seeing them, even with perhaps stronger symptoms, still living life to the fullest and not letting that stop their spirit of adventure gave me hope and determination.

I started climbing other, more difficult, mountains with another MS climber from the trip. Six years later, Lori organized another adventure, this time to the Bugaboos. I was in a very different place mentally this trip. Having now been diagnosed for 7 years, I no longer feel the daily panic that my life will fall apart. MS has become something that instead of limiting me has caused me to do more difficult and challenging things with my life.

My motto became, “The only way for a diagnosis like MS to be ok, is to live a better life with it than without it.” I wanted to join the Bugaboos as a person who has lived with MS now for a few years. I knew that for me, seeing other women diagnosed for longer times really helped to ground me. Some of their stories, such as one woman sharing that she couldn’t get out of bed for nine months once and is now very active and doing well, taught me that even in the midst of a pretty severe relapse there is hope. Everyone has tragedy in their lives, and while sometimes it breaks us, mostly around me I see people who are striving to turn it into a force for positive change in their lives.

“For me, going to the Bugaboos was about paying that spirit of resilience in the face of tragedy forward that other MSers have done for me in the past.”

~ About Sarah Conrad

Sarah Conrad was diagnosed with MS in 2010 while a PhD student at Harvard. She has set out to live a more awesome life with MS than she would have without it, in addition to living an active professional life in science. She runs a website and blog to inspire people living with chronic conditions at www.LiveAwesomeWithMS.com. You can read more about MS, her personal experience, and stories she’s written about climbing Kilimanjaro, Aconcagua and Mt. Rainier.

 

Elizabeth Persons ~ MS Hiker:

Elizabeth Persons

Elizabeth was diagnosed with MS in 2013.

When asked what Elizabeth gained from being on the Empowerment Team helicopter hiking adventure, she reflected on a recent event that happened shortly after she returned home from our Bugaboo trip.

“Saturday I tripped while trail running. I’ve been avoiding trails until after the Bugaboos because of my history of falls and injuries.

Anyway, my first time out in months and

Jim Owens and Elizabeth Persons

I sprain my ankle. Trail running is the thing I love doing most. I was so depressed and down on myself, fighting back tears, and then I thought of Lori and Sarah and the rest of our amazing Empowerment Team and got myself moving and finished the loop. I wish I didn’t have moments of such deep self-doubt and depression, but you guys help me look beyond the setbacks quicker than I did before the trip. It didn’t cure my MS or eliminate my fears and doubts, but it empowered and inspired me to quickly recognize them and keep moving despite them. “

Elizabeth made a difference in the life of another hiker on our trip, named Jim. Jim Owens at age 75, recently experienced the death of his wife Evelyn, and is dealing with grief and sadness. Jim and Elizabeth became a support for one another, as they realized the grief they were both experiencing was very similar in many ways. Elizabeth’s words:

That makes me so happy that I helped Jim. He helped me too. I felt a very deep connection with him and know we will be life long friends. I think it was the counselor at the MS Center that wrote in the ‘InfoMS’ magazine about grieving as a part of the MS diagnosis. When I read that, it made so much sense and really helped me let go of who I was and move toward who I am, and still working on becoming. This trip did so much to help me as I continue to evolve in this MS journey. I’m always a little bummed after vacations, but this one was so powerful that I feel a deep sadness at saying goodbye to the group.”

 

Read more about our trip at:

https://www.linkedin.com/pulse/2017-empowerment-through-adventure-bugaboo-helicopter-lori-schneider?trk=prof-post

Leave a Reply

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Phasellus eros tortor, molestie in ligula quis, condimentum iaculis metus. Suspendisse lacus lacus, auctor sed nisi ac, bibendum ultrices tellus. Suspendisse quis enim ut arcu mattis accumsan sed id lorem. Ut finibus orci dolor, ac sodales diam tincidunt in.