I know a woman who also has MS. We’ll call her Cynthia. She is about five years older than I am and her disease is a bit more advanced. Each person with MS has a different experience, but Cynthia and I seem to be traveling down the same path. Jenny, the PCA who works for me in the mornings, works for her in the afternoons. That is how we know each other. You can say all you want to about HIPAA and confidentiality, but I am grateful for our connection.
It was Cynthia – through Jenny – who encouraged me to make my life easier by having a colostomy. (Doctors had suggested it to me but – oh my – who would want to do this?) Jenny knew how to clean and change a colostomy pouch because she had been working for Cynthia. When I bought cylinders and they came as a three pack, I gave one to Cynthia. When my pouch wasn’t working well, Cynthia gave me one of hers to try. She lent me her wheelchair control to try, too. When her sisters brought her an extra swimming noodle, she gave one to me. (I use one beside me in the wheelchair to help hold me up. She uses hers over the armrests of her shower chair.) We are disability buddies.
When my daughter was a toddler, we used to play giving and receiving.
“May I have that please?” I would ask, pointing to a toy. She would hand it over.
“Thank you!” I would say. She would grin. I would give her a different toy and then ask for it back… And so on and so on. If you’ve played with a toddler, you know about their incredible patience for such games.
We were practicing weaving a web of support – the web of life – and that’s what Cynthia and Jenny and I are doing too. Isolation is the enemy, so we practice connection.
Colostomy pouch anyone?