Over the past few months Raphy Rosen has been sending us updates from his job as the CSSR-TCC intern at the Terence Cardinal Cooke Health Care Center. He’s walked us through stories of former beauty queens, dabblers in polytheism, lovebirds, and resident cheerleaders, to name a few. While these stories are moving and more often than not, highly entertaining (thanks to Raphy’s dry wit), they are each written from the perspective of the observer. In his final post, Raphy shifts his view and attempts to portray life at TCC through the eyes of an admired patient. With this post he comes full circle from his position as a new intern trying to get comfortable in his long white coat, to a friend and confidant to the patients with whom he works.
14- Through Their Eyes
Mr. Johannes Berliner (name changed) is in his mid-sixties, relatively young for a TCC resident. He came here due to end-stage kidney failure which forced him to live near a dialysis center. After ten years of dialysis, with innumerable complications and hospitalizations, Johannes finally got a kidney transplant which keeps him off dialysis. His immune system is quite suppressed to ensure that the kidney is not rejected by the body, so he is at high risk for infection. According to Johannes, he has been twice told by surgeons that he will probably not make it off the operating and table, and twice he has beaten the odds. Johannes Berliner is my favorite resident in TCC.
Johannes is extremely intellectual. He pursued a PHD in biological ecology for a number of years, but was unable to finish since he dropped out of school to care for his ailing parents who died within a short span of each other. After that, he worked for the US Energy commission until he became institutionalized for his renal failure. Johannes spends most of his time in the multimedia room researching obscure inventions and breakthroughs in the scientific community, which he wishes desperately he could rejoin. He knows much more about history, politics and science than I do (not a particularly difficult feat) and is quite sarcastic and acerbically witty. While I admire Johannes’ intellect and curiosity, what impressed me about him is his character.
As happens with a surprising number of residents in TCC, Mr. Berliner struck up a romance with Ms. Rosa Marino, a resident on the Huntington’s unit. Rosa has two daughters from a previous marriage, who were aged 10 and 12 when Rosa was institutionalized. While Rosa was still in good health, she and Johannes did everything together and were known throughout the building as the TCC lovebirds. Johannes admits that their relationship was a strange one for a number of reasons, among them that he is Jewish and she is an Italian Catholic. When I asked Johannes if he had considered formally marrying Rosa, Johannes told me about an encounter he had with Rosa’s brother, a former police officer, who had heard about their relationship: “He came up to me, looked me straight in the eye and said in a growl, ‘You know, in my family, a mixed marriage is an Italian Catholic marrying a Spanish Catholic.’ I got the message loud and clear.”
Tragically, their relationship has an expiration date on it, in the form of HD. While Johannes remained in good health and even improved, Rosa declined to the point where she was confined to a recliner and can hardly speak. Johannes still wheels her out of the HD unit to go to different recreational events (at which he usually sits on the side and makes snide remarks) or just to sit on the patio outside of TCC to watch the traffic go by. He is one of the few people who can evoke a response from Rosa now. They still tease each other, but mostly Rosa sits quietly or cries that she misses her daughters, now aged 20 and 22. Rosa’s daughters used to visit very frequently but have found seeing their mother in her current state so difficult that they cannot visit as often. I think about these girls and I cannot fathom their lives and their futures. They have divorced parents, an aunt who died from HD, a mother and uncle who are dying from it, and one healthy uncle. They know in the back of their minds that they are 50-50 odds for HD and that they have not yet been tested for the HD gene. I wonder at the decisions they must make. Will they be tested before they have children? Will they just take the risk and hope that they are not carriers? Will they tell their spouses? What if both sisters have the disease? What if one does and the other does not?
Aside from Johannes’s devotion to Rosa, he displays a remarkably balanced understanding of TCC that I have not seen in anyone else, resident or staff. On the one hand, his perspective on issues that arise at TCC is very much one of a resident. He complains, like others, that the food is poor, that many staff members ignore residents and their lack of true caring is obvious. On the other hand, he acknowledges that most residents do not even make an effort to understand the mindset of a nurse or a CNA. Residents often think that he or she is the only person who needs care on a floor and fail to appreciate the enormous patient load that each nurse/aide must care for and the stressful nature of their job (changing diapers, bathing residents, cleaning festering wounds, etc). For this reason, Johannes tries to be cheerful and appreciative to every staff member at TCC.
I sat with Mr. Berliner in the auditorium and talked for a full hour and I tried to see the world out of his eyes. He said “hello” and “good evening” to staff members walking in and out of TCC. We sat as the day shift left and the evening shift came on duty. He greeted security guards, therapists, administrators and other patients. It occurred to me that the there is a great deal of meaning to the word “resident”. He truly resides there. He has no other home to go back to after an 8-hour shift or on a vacation day or sick day. Under his watchful eye for the past 12 years, staff have been hired and fired, residents have been discharged, transferred and buried and students like me have come and gone leaving no trace but manila files gathering dust in the director’s office. To the residents, we are really transient presences in their lives that are fixed and immobile. I think that an appreciation of that fact, that TCC is the one and only home for most of its residents, would contribute to a much more sensitive quality of care from the staff.