While I redrew the doctors’ predicted timeline, they weren’t far off. Soon after my triumphant walk in Amsterdam, I began using a wheelchair. I had bouts of a nerve issue known as “the suicide pain” that left me unable to speak or eat solid food for months. Eventually, I had to radically scale down and reshape a career and business I loved.
I recognize this may sound very depressing. Contrary to what you might think, I’m happy and thriving after 17 years with this disease. I am not technically “healthy”, but I’m not dead yet. At 55, I feel I’m the healthiest and most balanced I’ve been in my entire life, if not physically, then spiritually. I didn’t follow the path I anticipated when I was 37, but I didn’t follow the map handed to me either. I feel lucky and grateful to have the right people around me and the creativity and stubbornness to find goodness I can build on. This is how I fight back. I’m a pioneer at heart, and I chose to find my own way. Like Lewis and Clark, I could reach a shining sea or end up dead on the plains. I don’t have a compass. I can navigate by the stars, but who can see the stars in the raging storm I can find myself in? Sometimes, I simply go with the flow. While I haven’t found the shining sea yet, I’m here to report a stunning journey. Even if I don’t have a clue what’s going to happen in 10 minutes, I have my intent. Navigating a chronic disease is an art, and the patients living it, the artists. And like any masterpiece, my intention to create is wrapped in a unique, organic flow.
My health voyage can feel like floating in a river. As I progress downstream, I encounter and assess new obstacles and opportunities. At times, the water is calm, and I move peacefully. There are scary moments when rocks and rapids may destroy me. The water is turbulent, and there’s no solid footing. Keeping my head above water is a transient state. Staying centered requires being present and at peace. Sometimes I reach something of beauty, sometimes not. Clutching at the water, hoping to control it, is a fool’s errand. With the safe shore out of reach and little chance of swimming upstream, it’s wise to ride the flow and let it do the work rather than fight it. Flexibility and reflex are strength, rigidity and force can be weak. There are no guarantees, but even subtle movement can yield meaningful change.
