A Year of Memory Letters

Literature shows that once diagnosed with scleroderma, life expectancy changes from unknown to three to fifteen years, pending cases. Unless diagnosed without symptoms, patients seem to live for decades.

Once someone is diagnosed, symptoms have usually begun, such as icy fingers and toes, discoloration, mycosis, gastrointestinal difficulties, …and so the slow disintegration of tissues, skin, muscles, and organs. There is no cure; there are only means to slow the inevitable. Medicine made to suppress an autoimmune system set to disintegrate its own body is the only solution to gain time. Time becomes a space where all colors, sounds, and aromas melt into one sense, where the time continuum is a moment, a snap of fingers, where smiles and holding hands are captured into a cocoon.

The only words I could whisper were, “My children. My children…My children.” They are the drums that guide my steps, and each drumbeat is time and time calling me. And I whisper, “My children, please guide me.”

As the drums beat to their rhythms, holidays and birthdays pass. Each of them was honored with cards. This year, I wrote additional cards and letters to be gifted to each of my loved ones the year following my passing, no matter when it would occur. One by one, they will be given. One by one, they will touch my children’s hearts and thank them for being my light strength. One by one, they will be reminded of their wonders. One by one, they will be set to unfold and fly away like paper origami flying into the winds. One moment. One year of cards and memories.

We think of wills, money, children’s custody, and welfare. I think of my children’s heartbeats to find a note, a word captured in time: a memory, an imprint.