October 2019
I don’t have many heroes, so I was particularly upset when one of them died this morning. My wife’s nephew, John Patrick Hayes departed this world at age 42 leaving behind a woman who should get sainthood right now, in my opinion, and two special needs foster kids.
John had much to overcome in his life. He contracted a severe case of Juvenile Rheumatoid Arthritis (JRA) at age 5 and when it finally relented after years of pain, he was about the size of a ten-year-old, with frozen joints, confined to a wheelchair, and unable to take care of himself without help. He went to college, met and married an incredible woman, and found a good job working for the defense department. At first he took buses to work, an hour each way. Eventually he managed to get a specially equipped van that he could drive from his wheelchair.
He and Christina bought a house in Manassas Virginia and, to my surprise, they decided to take in foster kids with special needs. I couldn’t believe they had the energy to do that. But they did. I was very impressed.
I saw John only a few hours a year at family functions. But even in that short time, I enjoyed watching him patiently parent his foster kids, and managed to have some wonderful exchanges with him. He was a wise man.
Perhaps the best thing he ever said to me was about physical well-being. I told him it was hard for me to accept the deterioration of my faculties – sight, hearing, walking, balance, etc. as I aged with Parkinson’s Disease- and I didn’t know how he avoided depression.
“I don’t think it’s as hard when you’ve never had something as it is when you have it and lose it.”
It’s not yet clear exactly what brought John Patrick down, but it’s likely it was related to the damned Rheumatoid Arthritis. He was diagnosed with Hemophagocytic lymphohistiocytosis (HLH), “…a devastating disorder of uncontrolled immune activation characterized by clinical and laboratory evidence of extreme inflammation.” This syndrome can be caused by “…infectious, rheumatologic, malignant, or metabolic conditions (acquired HLH). Prompt recognition is paramount and, without early treatment, this disorder is frequently fatal. Although HLH is well described in the pediatric population, less is known about the appropriate work-up and treatment in adults.” (Blood Journal)
John Patrick was a church-going Catholic, and I pray that his faith helped him and Christina through all this. Life dealt John a lemon, and he made lemonade, for everyone. God bless you, John. Requiescat in Pacem.
