As I entered her room, a cast of grey somber sadness permeated the room, as she lay there unconscious and clinging on to life, her life. It is the only thing she knows how to do well, the only thing she taught herself and will repeat her lessons on and off for the rest of her life.
When she is ‘well’ she will recognize me as I stop to talk to her while she sits in her wheelchair, reaching for me with her twisted deformed body, eying me and saying with her eyes, please don’t go away, I love the attention, I need you to help me feel human and recognized. I make it a point to take my hat off if I’m wearing one and not sound like I am talking down to her. I like giving her respect as a human being as opposed to talking to a say, a rapist.
Her head sits at an angle that was somewhat contorted and her tongue, as always is hanging out of her mouth due to her condition. The question now governing my mind is how comfortable she is and when will this suffering end. As her legal guardian and co-chair of the guardianship committee for the agency I volunteer for, we oversee her life and in the end, her death. It weighs heavily on my mind and I know the decision will be final, one that she will not participate in. How sad.
Her life is slowly ebbing away and she is unaware of that fact. The doctors speak with a finality in tone and clinical expressions that do not comfort or sooth the heart or soul.
She will leave this World quietly and without fanfare, she will not be noticed after a while and forgotten probably sooner. However that may be, I will carry this sadness with me as I go on to help others, including my daughter, seek some dignity and value from this World.
We all have to leave someday, there is no doubt about that, but we may have the comfort of someone holding our hand as we say goodbye and cross into the unknown. This woman will probably not have that unless someone calls me to hurry and come down. I hope so I don’t want her to die alone.
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