Love Letter to Lonely MS Sufferers
The internet provides such rich treasures. Words and music can open our minds to new possibilities. Multiple sclerosis support sites can soothe our emotional pain and bring us new friends. Our virtual MS friends sing their own songs and make beautiful music together, creating a lush choral piece to which we can easily add our own counterpoint. Passionate phrases emerge, such as: I have MS but MS doesn’t have me, and I am not my disease. These inspiring motifs can prop us up as we limp along our life paths. They can also strengthen us so that we become more secure and therefore more open to growth. I feel so much gratitude towards the whole community when I become anxious and restless, as these are signs of growth. It means I’m ready to sing a different song.
Finding inspiration all around us
Have you ever wanted to sing a different song but were unsure where to find one? There are words and music all around us! For example, I recently found two new sources of inspiration: Argentinian poet Antonio Porchia (1885-1968) and French-Canadian philosopher, disability theologian and humanitarian Jean Vanier (1928-2019).
There are two ways to enjoy the works of Porchia and Vanier. One form is a list of their quotes found on Goodreads and WikiQuotes, etc., while the other longer form can be found on sites such as Amazon and AbeBooks where you can purchase their work for a more in-depth read.
Loving people who are broken
I highly recommend Jean Vanier’s BECOMING HUMAN. Here he develops his main thesis that we can only become fully human when we allow ourselves to love people who are broken. A pioneer of the sub-specialty “disability theology,” Vanier created communities in 1964 called l’Arche, residential homes where intellectually disabled men and women live along with those [caregivers] who feel called to share their lives with them. (Quoted text from page 6 of BECOMING HUMAN, by Jean Vanier.) These one hundred communities still thrive today throughout Canada and abroad.
What it means to be truly human
In a world that values health, strength and beauty, Vanier devoted himself to those living on the fringes of society and claims to have learned from them what it means to be truly human, to be lonely, unloved, without hope. He tells a story about walking through a psychiatric hospital and finding a hundred children with severe disabilities that were lying, neglected, on their cots. There was a deadly silence. Not one of them was crying. When they realize that nobody cares, that nobody will answer them, children no longer cry. It takes too much energy. We cry out only when there is hope that someone may hear us. (Quoted text from page 9 of Vanier’s BECOMING HUMAN.)
Vanier's quotes on loneliness
In a shorter form, here are some excerpts of Vanier’s musings about loneliness:
“Loneliness that engenders depression manifests itself as chaos.”
“In chaos (from loneliness) there is confusion, and coming out of this confusion there can be a desire for self-destruction, for death…there is no light, no consolation, no touch of peace and of the joy life brings. Such loneliness reveals the true meaning of chaos.”
“Loneliness is a life turned in on itself. All order is gone and those in this chaos are unable to relate or listen to others. Their lives have no meaning. They live in complete confusion, closed up in themselves.”
Relevant to our lives with MS
Antonio Porchia’s VOICES is a compilation of his sayings. Here are a few of his quotes that I find particularly relevant to how we feel about our lives with MS, only with a twist that puts us in the role of the stronger one:
“You are sad because they abandon you and you have not fallen.”
“They will say you are on the wrong road, if it is your own.”
“Nothing is not only nothing. It is also our prison.”
“I am in myself so little that what they do with me scarcely interests me.”
Owning the loneliness
This is my love letter to all of you who own the loneliness that Vanier observes as an inescapable part of being human. I feel strongly that he, along with Porchia, wrote love letters to all of us as a reminder that in our loneliness, we are not alone.
How do you feel before getting an MRI done?