Our neighbor suffers from Alzheimer’s disease, and his wife is dedicated to his care. She has him at home still, which means his care is her full-time job. She told me today, when I saw her at the mailboxes, it is their 30th anniversary. “I couldn’t take him to a restaurant,” she said, pointing to her husband in the car, “but we can still celebrate! We have Applebee’s take out.” I wished her a happy anniversary and we spoke briefly, checking in. How are you? How are you? Holding up. Doing my best.
We moved into the neighborhood five years ago and met the husband while he still had some light left in him. He was a funny person. He probably was a real cut-up before the disease took hold. He is also a warm person, even to this day. Once, before my wife came out as trans, we were talking to this couple and the husband whispered to my wife, “You are pretty.” He somehow saw through her façade and saw her! Now he often seems far away, in a world we couldn’t recognize.
I admire my neighbor’s dedication to her husband.
It isn’t easy shifting your entire life and lifestyle on a dime because your beloved changes.
Three years ago, my own wife, who was my (assigned male at birth) husband at the time, informed me she was planning to become more herself by transitioning. She was terrified to tell me she was transgender. I had my suspicions, so it wasn’t a total shock, and although I was and am accepting, I had (still have) a lot to learn about the process of transitioning, what it means to the person and to their family, what language to use, how to navigate a world not designed for and often not welcoming to transgender people.
How to navigate a world not designed for …
people with disabilities
people suffering from life-altering diseases
people who don’t fit into, can never force themselves to fit into, society as it is.
I’ve had to grow a lot since Tallie came out. I’ve had to face my own secrets and accept parts of me that I’ve kept hidden or denied. I’ve also had to learn to be brave and protective. I’ve learned a great deal from my friends and family and neighbors and co-workers about what real acceptance looks like. I imagine my neighbor, whose husband has Alzheimer’s, and I both feel lonely.
It’s difficult to explain how it feels to live a life in constant dread of the next shoe dropping. What new hellish legislation will be passed in which hellscape states? Where is it safe to travel? How long will it be safe here? Is it really safe for my wife to use the public restroom? Is it really safe for my wife? Is it safe?
Who do I talk to about this:
What should I have done when I noticed my wife was misgendered on the medical report of her recent colonoscopy?
How should I have responded?
Should I have played hero and called attention to the paperwork while we were still at the hospital? Or should I have allowed my wife to be her own advocate, which is what I told myself I was doing when I did nothing.
On the way home from the hospital, I said nothing. My wife was still groggy from the colonoscopy and I must admit I was amused by her grogginess. But, once she sobered up, she picked up the paperwork and discovered the misgendering on her own. I wondered what would happen next.
Nothing. We have done nothing. We remain silent even to each other. I’m even uncomfortable writing this, and I feel compelled to send this draft to my wife before posting it on my blog. Is it wise to speak/write the pain back into existence? It’s been two months now. I have no idea where the paperwork walked off to.
I can’t forget my wife’s face when she read the report and saw the misgendering in print. The light in her eyes dimmed. She looked confused. Then hurt. It is unnecessary pain carelessly and cruelly induced by people purported to be caring for her.
Here is where cisgender people, who aren’t in any way intimate with a trans person, may say, “But what’s the big deal?”
Okay, let’s start with context.
My wife works at the same hospital where she had her colonoscopy. They know her.
My wife’s official paperwork has been legally changed for two plus years now. Her driver’s license, her medical records, her social security card, her birth certificate, all of it!
And if the paperwork name and gender markers changes aren’t enough, my wife has had an orchidectomy . She’s in transition, which is obvious if you’re down in that area, which they were!
My wife hasn’t had a complete genital change yet, because it requires getting on a waiting list, it requires all sorts of cost-prohibitive preparation, it’s a costly surgery that requires a lot of time off work, and none of it is paid for by her insurance or my insurance, and my wife is a housekeeper for a living, so you can surmise she doesn’t have expendable income.
Instead of treating my wife, their vulnerable patient, with dignity, the bureaucrat? the doctor? the attending nurse? described my wife as male instead of writing transgender woman. Or woman.
Stop and consider: If your identity, your sense of self was ignored, dismissed, casually tossed aside, by people you trusted to take care of you, by the very people who saw you at your most vulnerable, how would you feel?
Whoever made the decision to ignore the name, the legal paperwork, the partial surgery, the preferences, shouldn’t be in healthcare. Although, to be fair, the medical community is notorious for forcing intersex babies into the binary before these babies have had a chance to form their own identities.
Who do I talk to about these moments? My self-doubt, my second-guessing, my questions for which I have no one to ask?
The questions remain: What should I have done? Did my silence at the hospital make me complicit? Why didn’t I put up a fight? Will I be better able to protect my wife in the future? How can I learn to be as fierce as my neighbor? How do we navigate a world not designed for us?
A few years back, pre-pandemic, I asked my students to read an Elie Wiesel excerpt about dignity and the horrors of Nazi Germany. I then asked the students to discuss the importance of dignity, what it means, who deserves it, and why Wiesel, considering his experience in WWII, thought the concept is important enough to write about. Students gave many answers.
Not one student gave the answer I was desperately seeking.
The answer I wanted to hear: We all deserve dignity simply for being alive.
My neighbor with Alzheimer’s deserves dignity, and his lovely wife is ensuring he gets it. She shares Applebee’s with him to celebrate their wedding anniversary, although he may not even remember he is married. She treats him with love. She sees him even as his sense of self disappears into the ether.
My lovely wife deserves dignity. Her paperwork should reflect who she is, not who the gastroenterologist decided she is. She is worthy of respect. We all are.
Our worth shouldn’t be calculated by our pocketbooks, our intelligence, our beauty, the color of our skin, our gender identity, our genitals, or our ability to function in a world not designed for us. We are worthy simply for being alive, for being a part of the world in which we are all interconnected.
“And then I explained to him how naive we were, that the world did know and remain silent. And that is why I swore never to be silent whenever and wherever human beings endure suffering and humiliation. We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Sometimes we must interfere. When human lives are endangered, when human dignity is in jeopardy, national borders and sensitivities become irrelevant. Wherever men or women are persecuted because of their race, religion, or political views, that place must – at that moment – become the center of the universe.“
Elie Wiesel, 1986 Nobel Peace Prize Acceptance Speech
Non 