connecting with a butterfly

They called to me before I had reached them, “Come, sit here!” And they budged together to make space on the bench.

The incline wasn’t steep, but it had me puffing and they knew, for, I was to discover, she suffered from MS, a seeping condition which gradually leads you towards complete incapacity. Her smile was bright and as I thanked them, puffing, smiling, we locked eyes, her more readily than her husband. I could see his pain, quiet, resigned, knowing such moments with her were to be treasured for there wouldn’t be so many. And I could see from her pin-legs that she was desperately unwell.

“Those walking sticks are great,” I remarked as a way in to chatting.

“And I like your crutch!” She laughed.

“With two, I have done Pyrenean footpaths, with their predecessors Himalayan foothills.” I stood up. “They’re cushioned, saving your hands, the pneumatic pump action saves your shoulders, the foot pad is broad and it bends….” “Giving more stability!” “Yes. You feel utterly safe. You can order the pads from your hardware shop.”

“Oh!” She glanced at her husband. “They cost a bit, but….” “It’s worth it!”

“They’re also a seat, two’s an armchair!” Setting my bottom on the hand grip, I showed her how.

They laughed. I adjusted them to suit her height and she was up and trying them. “Now I’m getting these!” She used her phone to photograph the name.

I should get a commission, the amount of times I’ve sold these extraordinary crutches a French company has taken to a new level. We discovered that we once both loved walking great distances, that she had done The Camino in one go, as had Camilla. And here we both were finding four hundred metres a challenge. But, though it is possible my recent past may have been worse than hers, at least my future is less predictable… soon, as her body is subsumed by the disease, she will become bed-bound.

How, I wondered not for the first time, would you cope when you are lost inside your head, unable to interact with or sense the world? A gem of a little French book, “A butterfly in a diving bell,” explored this. After a severe stroke, the editor of a Parisian fashion magazine revealed his debilitating experience to his physio by blinking his eye, his only moving part, to create a code which she wrote down. When for six weeks I existed in a stroke unit, I’d pass the beds of those with minds as bright and alive as hers imprisoned in inert bodies; sometimes I shared the lift with their corpses.

Long term illness changes you. You become a shadow of the character you once were, unable to bounce and communicate as easily, for it takes more effort than you have. People subsequently treat you in a different manner, they who spin astride life’s carrousel inevitably perceive you who stand at in the sidelines as a faint ghost. Even old friends can’t bend to your new reality, left alone, you feel worthless, intensely lonely.

It is only when you are with the few who are able to settle and relate to you in your less charged world that you can enjoy true contact. And there we were, vibrant in each other’s company, our energies not mismatched but synched. How charged we were by the other and as we said goodbye, we hugged, the long, deep hug of two souls touching in recognition.