My brother was recently diagnosed with yet another illness. For the last couple of years I’ve answered any late night phone calls from family members with extreme hesitation. My brother has two children and I’m terrified that some day I will get a phone call that he didn’t make it through the night.
It started a few years ago with one diagnosis. I don’t know all the details, but in the last few years he has gone through dozens of surgeries and many of them he was not expected to live through. He has blood clots filling a stint in his heart, heart problems that require treatment but he can’t receive treatment unless he removes the stint, can’t remove the stint because then he’ll die from a blood clot. He’s had colon surgery, hip replacements, cancer, blood transfusions that have actually made his conditions worse, shingles and more.
The University of Utah wants to study him and put him in a textbook so they can better help other patients. That’s when you know things are really bad. Recently, after another turn in the hospital, he was diagnosed with another disease, a tissue disease in the lining of his colon. Most patients, 90% die, he was told.
Christmas is his favorite time of year. I asked friends, What do you do during the holiday for someone with a terminal illness? And they said, make it as normal as possible, spend time with each other, make it memorable without acting like it’s his last Christmas and thereby depressing him further, and get out the video camera.
Simple comforts, Rachel told me. Drive around and look at Christmas lights, make their favorite foods, play Christmas music and watch their favorite movies.