In Sayantani DasGupta and Marsha Hurst’s book Stories of Illness and Healing: Women Write Their Bodies, they describe the term empathetic witnessing as “the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and gives value to the experience”. While my Mother never physically wrote out an illness narrative on paper, her story is written in the strength of her character and lives in her indomitable spirit. And while we may never feel that there is any sense to this experience and struggle to find its value in her life, I will continue to witness her pain with an intuitive understanding and trust in the significance of it. I don’t need a written narrative. I can see it in her eyes, hear it in her voice, sense it in her body.
Language falls short of being able to express our pain and frustrations in a way that people can rationally understand what it is we’re feeling. Yet, I know when her head hurts or body aches, when her energy is depleted or when she’s preserving it for a night of fun. Without even a word, I know it simply because I have acknowledged the illness, what it means for her on a daily basis and her persistent struggle to be healthy because of it. I can’t even say I understand it because no one but her truly can, and I refuse to reduce the immensity of its impact on her life.
I see my Mother’s determination to live her life uncontrolled by her illness and her refusal to be defined by it, by something many of her friends, co-workers and even doctors deny her of. For anyone reading this blog post with an illness, I don’t have the answer on how to convince people to understand or how to find someone who will. In my Mom’s case, words have nearly always come up short. Find someone in your life who adores you, trusts you, looks up to you and loves you more than life itself. Because for my Mom, that’s me….and it’s from those feelings alone that built my understanding.