He described the terror that wakes him: multiple sclerosis will paralyze him and he’ll lose his job and his family. For the first time since we’d started working together a few months earlier, Paul (not his real name) described his palpable pain.
Until then, Paul had been consistently upbeat and pragmatic focusing on the changes he would make to manage this illness and continue to work and live a fruitful life.
Now, by giving voice to his fear, he’d taken the first step toward learning to live with it. At first, Paul only wanted to change the feeling — to stop being afraid. But have you noticed how hard it is to change an emotional response? I’ve found that people make better progress when they learn to shift their response to a feeling. Paul had never been afraid of anything before and had to learn about this emotion and his response to it. Over time, he discovered productive ways of responding to fear, to thinking differently about this feeling and putting those thoughts into action. He was a hard worker at everything he did and he practiced this until it became muscle memory.
Change isn’t easy, is it?
I’d always liked that I was a risk taker. For the first few decades of my adult life I rarely stopped to think about how a symptom might affect what I wanted to do. The symptoms could be embarrassing, annoying and even debilitating but I didn’t let it stop me. I got hurt frequently, and often due to my disabilities, and there were embarrassing moments along the way. But my overriding intention was to continue to participate in the world and, if that meant taking risks, it was worth it to me.
Over the past decade, however, this changed. It’s been a gradual and subtle shift and I suspect there are multiple reasons. This attitude change became crystal clear when I had the chance to go on an exciting but physically strenuous trip with my husband.
My first and second response was unequivocally ‘no’. The was followed by internal debates and waffling that eventually led to ‘yes’. I wanted to listen to that part of me that believed I could still behave like a relatively healthy person, even if fear and worry had worked their way insidiously into my being.
What happened? I spent long days on my feet (that are usually numb and painful), walked hilly, uneven cobblestones and unpaved terrain at high altitude in the Peruvian Andes and climbed Machu Pechu. My endurance and balance were better than I’d experienced in years. Maybe it was because I focused so clearly on each step. Maybe the stars were aligned.
It wasn’t a complete reversal. There were hikes that were too hard for me and activities I didn’t do because I was too tired. But when the trip ended, I felt glee about what I did do. What a kick to have that sensation again.
I came home determined to stay that unafraid person who paid full attention to this moment. But the day after I returned, I became sick with a urinary tract infection — a frequent health problem . Fever, pain, fatigue. Immediately, illness and debilitating symptoms were there again and worry about future crept in.
Where was that person who’d climbed heights?
I’ve written how chronic health conditions are a game changer. But reflecting back on 30+ years of living with physical symptoms that seriously get in my way, it’s clearer than ever that the greater challenge lies less in what we can or can’t do. More than ever, I’m convinced that attitude is the defining factor. We draw an invisible line when we decide what we take on and how we approach it. Call it willpower, hope or resilience — it doesn’t matter. It’s whatever internal force keeps us believing in possibilities.
So, the next time that inner voice says “No” , and you choose instead to listen to the voice that says “I can”, remember that you are making your statement for whether you’re still in the game or not.
Are you still playing?