Washington (CNN) — President Obama has asked the Department of Health and Human Services to establish a rule that would prevent hospitals from denying visitation privileges to gay and lesbian partners.
It’s something all of us can understand. Having a loved one in the hospital and being restricted from being near them because of our sexuality or gender identity. For those of us who’ve actually faced this situation, regardless of when and where, a mention of the circumstances is all it takes to bring that emotion back in full force. Today, hearing about President Obama’s directive to institute policy which will change hospital rules in order to allow LGBT partners to be with their loved ones and to allow the patients themselves to designate their own "circle of intimacy" so that anyone the patient sanctions can be allowed in the room with them, I myself was taken back to a time when I faced this situation.
In my situation, I was luckier than most.
In the early 1990’s I lived with my partner at the time in the same house I live in today with my current, legally married husband. Michael and I had lived together here for only a year before our lives fell into chaos. Michael began feeling badly, having trouble breathing, and in an extremely short period of time, I was rushing him to the emergency room.
I can’t say any of it is a blur, since it’s all still very clear to me. I knew that Michael had HIV, but he’d made the decision to tell virtually no one else. He even made me promise not to tell hospital staff, which I reluctantly agreed to at first just to keep him calm. The year was 1993-1994 and HIV and AIDS was a very different animal. This was just before the "miracle" drugs came out, when the destructive AZT was the drug of choice and when doctors were still very much in the dark about the disease. Michael was robust and healthy up until the day I took him to the emergency room. No one could have seen it coming. He’d also chosen to treat himself with handfuls of vitamins, minerals and herbs rather than the toxic alternatives offered at the time. The stigma for someone living with HIV/AIDS was also very different. I disagreed with Michael keeping it secret from those treating him, but it was a simple fact that at that time you had to be very careful who you told.
Shortly after I realized that day that things were getting very bad very quickly, I took it upon myself to tell the doctor about Michael’s status. By late afternoon Michael was in a hospital bed and connected to oxygen. An instant after that he was moved to Intensive Care, suffering from very serious pneumonia.
Hospitals are restrictive on all levels, but in Intensive Care, even more so. I was faced immediately with the brick wall that is hospital visitation, told firmly what the rules were and how I had to comply. Fortunately for me, my situation didn’t take the disastrous turn so many other LGBT Americans face every day when trying to be near the person they love. With nurses around me, rules and regulations coming from all sides, I made a firm stand. I looked them in the eyes and with every bit of sincerity I had, explained to them that not only was I going to be in the room with Michael, but that it was not going to be for a visit. I was there to stay, day and night, until he was released, and if they wanted to try and remove me they’d better have a full police squad standing nearby to drag me out. To my complete shock and eternal gratitude to those wonderful nurses, they acquiesced. They even brought in a recliner for me to sleep in.
I took a leave from work and for the next 30 days, as Michael moved out of Intensive Care, then back again, in a coma for most of the time, I lived at the hospital by his side, running home for a change of clothes and using a small, closet size hospital shower when I needed it. I was lucky to have an employer who allowed it and a staff at the hospital, at least in Intensive Care, who, for the most part, granted my last stand.
I tell this story not to boast about how I stood up against hospital policy and won, but to let people know that making a stand in a hospital setting is the most important thing you can do. It’s not always a losing proposition. Anyone who has been through a critical situation in a hospital (and this was not my only experience, unfortunately) will tell you that you have to fight for your rights and the rights of the person you love and you have to monitor and fight for the care you require. Michael got out, and lived another year before passing, and during that entire time I researched, printed documents and confronted his doctors with any and all information I could get my hands on, much of which the doctor was unaware of himself. In the hospital itself I was a constant voice, demanding anything necessary and monitoring Michael’s treatment every second.
Being in the hospital in a serious situation is very much a war. You cannot leave all the checks and balances to hospital staff. You must be a constant advocate for your loved one, you must constantly ask questions about why things are being done and what the alternatives are. It’s frustrating and exhausting, but absent that mindset, the odds of you and your loved ones making your way through those trenches unscathed drops dramatically.
President Obama made a bold move with his hospital mandate. I’ve never understood why hospitals are so restrictive toward visitors, for some of the very reasons the President states in his directive, such as a patients up to the minute medical history, food allergies, sensitivities, etc. Giving the patient the right to choose anyone to be in the room with them and to advocate for them will immediately improve the level of care and particularly the level of comfort for the patient.
Read the President’s directive here: President Barack Obama’s Directive
CNN Report: Read the story here…
