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2020 was… an experience…
I will remember it as a year of burning; widespread wildfires, riots, blood-boiling anger and frustration with fellow humans, people burning up with fever from a novel virus, the blue light from constant screen time burning my eyeballs, and my constant nervous heartburn from worrying about it all. It has been so much to deal with, without any notice or prep time. It has been scary, confusing, frustrating, and lonely. Most days, the only thing I’m sure of is that I don’t know what to do. I don’t have the answers, but I’ve spent the last few years learning to be okay with that. Uncertainty is not new to me. Nor are fear and loneliness.
On St. Patrick’s Day, 2017, I was diagnosed with Multiple Sclerosis. I was a 29 year old breastfeeding mother of two under two, who had just returned to teaching second grade after maternity leave. The two months from the time my hands and feet went numb to diagnosis day lives in my memory as a jumble of hospital visits, panic attacks, google searches, and crying myself to sleep on every flat surface in my house while wondering how I could be in so much pain when most of my body was numb. It came without warning or explanation, and I was left knowing that my entire life was going to change, but no one could tell me how, when, or why. I wondered how I would keep up with the demands of teaching and take care of my children. I felt hesitant to confide in family who were also struggling to cope, or friends that couldn’t fully understand. I mourned the loss of the future I had envisioned for myself while imagining a now statistically more likely heartbreaking one.
Life was very dark back then, but the world continued spinning regardless of how I felt. I got through the days. I managed the best I could until I had to stop and wonder: What is the point? Why work so hard to just exist?
It was at my lowest point that I found First Descents.
In August 2018, I spent a week whitewater kayaking in Tarkio, Montana with 14 other young adults living with MS. I was fed the most delicious and healthy foods I’ve ever had. I saw the most awe inspiring landscapes of my life. I learned a new and exhilarating sport. I made friends. I laughed. I loved. I let the river be my teacher. The combination of activity, community, and nature created the perfect environment for discovering and integrating new perspectives on living with a chronic and unpredictable illness. I came home with renewed hope and reinvested in life. I left my teaching job and started training to be a yoga instructor instead. I left my marriage. I lost some friends and made new ones. I rebuilt relationships with my family. I did a lot of traveling. I got a dog. I started writing again. I taught myself to paint and weave. I remembered how much I love to sing and dance. I regretted it all some lonely nights when my new apartment was too quiet without the kids and I found I could no longer share funny and relatable teaching memes with my coworkers. It was hard. It was a process full of as many devastated tears as happy ones, but it was so worth it to rediscover the joy in living. Birdy finally spread her wings to fly.
So now here we all are, trying our best to survive 2020. It has been made marginally easier for me by my previous experiences. I look back to the lessons I learned through First Descents that changed my life once already to help again now.
I cannot control the river, but I can control my boat.
I cannot control life itself, but I can control how I live mine.
The rapids are real, and so are the risks of going through them. My fear is valid.
My challenges and obstacles are real. The risks are real. My fear is valid.
When approaching rapids, there are a few choices. Sometimes, there is another line to follow and avoid them. Sometimes, the rapids are impossible and I will have to get out and walk the boat for a section of the river. Most of the time, however, if I want to stay in my boat and continue moving forward, I have to go through. It is a challenge by choice, and the choice is always mine. What am I up for right now?
There is a difference between the fear that keeps you alive and the fear that keeps you from living. Identify which is which, and face the fear which would keep you from living. There is no one right answer. Do what is right for you. Empower yourself to create the experience you want to have.
The more I learn about kayaking skill and strategy, and the more I practice it, the more proficient I become at maneuvering the waters. This builds my confidence and increases my enjoyment.
Be courageous. Armor yourself with knowledge. Work within the fear until it isn’t scary anymore.
The river is a perpetual and dynamic force, never the same twice. I can never fully know what to anticipate. I have to be fully present and aware, feeling and responding to the water each moment. When a rough wave hits me from the side, I lean into it. I stay loose. If I get scared and tense up, I’m even more likely to overcorrect and flip.
Don’t let your mind time travel. Stay in the present. Right here, right now, you are safe. Let go. Let go of expectations.
I can make it through a rapid and have no idea how. Alternatively, I can do absolutely everything right and still end up in the water.
Success is not promised, but neither is failure.
Whitewater kayaks are not made to go straight. They tend to spin. Sometimes, when there’s a calm stretch of water, it’s fun to spin in circles and see what’s around. (It could be a grizzly bear crossing the river behind you or a bald eagle in its nest!)
Breathe. Rest when you can. Look up and find the beauty that’s been there all along.
Paddling alone is extremely dangerous. You need a team to look out for you. Picking the right team for the type of trip you want to have is important. Taking only beginner friends with you through class 3 rapids could make for a long day of swimming, while paddling with only serious athletes could have you missing the gorgeous views you pass along the way. Hopping in with whatever group happens to be at the put-in that day could leave you placing your trust in people who aren’t invested in your well-being.
Build the community that you want and need. Be intentional. Commit time and energy to the relationships that you value. The return on investment is more than worth it. Grow authentic relationships from shared experiences, not just out of convenience. (Sidebar – Some of the humans I think of and interact with the most, and feel the greatest bond with, I’ve met one time. The First Descents Community is AMAZING.)
… Whatever IT may be – a medical diagnosis or any other life challenge – IT is real.
My feelings of fear, anger, and sadness about IT are valid,
but they don’t have to dictate my choices.
I can face a challenge that I am afraid of.
I can acknowledge the possibility that things will go horribly wrong,
but have faith that they will turn out for the best.
I can make up my mind to live life beyond IT.
I may have to let go of what I thought my life might be,
but when I do, the question changes from what am I supposed to do? to
what do I really want to make of the time I have left in this one beautiful life?
I will forever be finding how best to maneuver my way through life with MS. It’s a process. Some days are better than others. 2020 has had more than its fair share of bad days. During the particularly challenging times, when I feel most afraid and alone, I think back to Tarkio and imagine myself on the river. I feel the movement of the water. I breathe the fresh air. I remember that this rapid is not the entire river. I embrace uncertainty and look enthusiastically forward to what lies ahead.
What an awesome article!! Very inspiring and motivating! You are outliving it every day, one rapid at a time!!
Elyse. You are such a shining star. You are an amazing woman and friend. We who are caretakers as well as our loved ones need to read and feel your words of encouragement. We love you and are so thankful for you. Such a blessing.
I am so proud of you my friend! What a beautiful and inspirational piece you have written!