Recently, a number of IMFers have contacted the Foundation wondering just who this Unknown Patient is and why he chooses to hide his identity. Well, the good news is that it’s a long story. The Unknown Patient was diagnosed thirteen years agoso don’t believe everything you read about survival times.
Although very active in the myeloma community and in cancer advocacy, he chooses to keep a low profile about his disease outside those circles. Why is that? Does he have some Unknown psychological disorder? Is he in denial? The answer is none of the above. He has always been a stubborn person. When he was diagnosed, he read the statistics about myeloma and spent some time cursing the Unknown chain of events that put him in this predicament, grieving his fate. He realized he had hit bottom when he found himself sitting at his piano, playing “O Terra Addio” (“O Earth, Farewell”) from Verdi’s Aïda. It was at that point that he decided to focus on living now and leave the dying part for later. He also decided that he did not want to tell his mother about his illness, which meant that he did not want her tripping over his name in print talking about myeloma.
He began writing for Myeloma Today ten years ago, authoring the first edition of the IMF Patient Handbook. He asked Susie Novis not to use his name. Together they came up with the pen name “Unknown Patient,” drawing their inspiration from “The Unknown Comic,” a performer who did a standup routine with a paper bag over his head.
In the ensuing years, the Unknown Patient has “bar mitzvah’d” three sons, celebrated his 25th wedding anniversary, attended all three sons’ high school graduations, two sons’ college graduations, joined the IMF’s Executive Board, served a term on the Board of Directors of a billion dollar corporation, made senior partner at his day job, served two years as President of his Synagogue, chaired patient advocate committees at the National Cancer Institute and the Eastern Cooperative Oncology Group, served as a patient consultant for the Food and Drug Administration, started two in-person support groups as well as an internet listserv for myeloma and amyloid patients, and on and on. His mother never found out about his disease, passing away peacefully earlier this year at the age of eighty-seven. So, your Unknown scribe hopes you will forgive him his eccentricity as long as his luck holds out and progress in research keeps out ahead of the beast we call myeloma.
Many of you know or have guessed his generally Unknown identity. If any of you are really desperate to know who he is or would like to contact him, feel free to send him an email at firstname.lastname@example.org or send him a letter at the IMF.