Do Not Resuscitate – A Final Act of Love

“DOMA was overturned” my father texted me on June 26, 2013. On that day, the Supreme Court ruled that the Defense of Marriage Act (DOMA) was unconstitutional and that the federal government could not discriminate against married lesbian and gay couples for the purposes of determining federal benefits and protections.

I immediately sent a text to my partner. “DOMA was overturned. Do you want to get hitched in a couple of weeks when we are in New York?”

We lived in Florida which was one of many states that banned same sex marriages. New York recognized gay marriage. If we married in New York, our marriage would have federal recognition even in a state like Florida. We’d taken the steps to legally protect our relationship, but there are over 1000 rights and protections marriage confers on couples that they don’t even think about when saying “I do”: social security, disability, retirement, family leave, health insurance and mundane things like not having to pay extra for a second driver when renting a car because spouses are covered.

“Did you just ask me to marry you over text message?” Was Christy’s immediate response.

Oh no. I did. I really did. What in the heck was I thinking? Clearly, I wasn’t. I would never live down this faux pas. It was so out of character for me which made it all the more embarrassing and something Christy would good naturedly lord over me in the following years. I was the sentimental one. My heart rules my head and at times gets the better of me: passion and emotion, instinctive reactions I work to keep in check. Christy was the opposite: logic and reason. Before the DOMA ruling she calculated we would save $10,000 annually if we married and filed a joint return. She was pragmatic and practical, but she didn’t want her marriage proposal to be.

Three weeks later on July 18, 2013, she married me anyway at the courthouse in White Plains, New York. What the Supreme Court ruling didn’t do with DOMA, they completed on June 26, 2015 with Obergefell v. Hodges when they ruled the right to marry is guaranteed to same-sex couples. That ruling forced our home state of Florida to recognize our marriage. We didn’t know it at the time, but these rulings and the legal recognition our marriage paved the way for navigating the “until death do us part” part of our vows.

In sickness and in health

Christy‘s health declined in the ensuing years. An accidental exposure to sulfur dioxide in 1997 permanently and irreversibly damaged her lungs. She worked to rehabilitate herself. Her lung function was ½ of what is considered normal, but you would never have known this being around her. In 2013 she developed a lung infection. She had developed this same infection a few years into her injury and took the prescribed therapy for a MAC infection; a daily antibiotic cocktail with her sputum cultured every other month to verify if the MAC infection was active. Her first culture was negative. From that point forward future cultures indicted there was no infection. After 12 consecutive of no active infection, she was considered cured and stopped taking the medication.

When she developed another MAC infection five years after we met, she expected the same result. Take the antibiotic cocktail for a year, negative cultures, stop the medication after 12 months and move on. Except this time, she would only go a few months testing negative and then pop a positive culture which sets the treatment clock back to zero and another 12 months of medication begins.

The infection was resilient. We couldn’t figure out how she kept getting re-infected. This chronic lung infection opened the door to other opportunistic infections that eroded her lung function over time. She easily developed pneumonia which ended up with her in the hospital. Each hospitalization set her health back and she was never able to recover to her pre-hospitalization health. Multi years of this infection took their toll.

For better or for worse

As she could do less, I did more. It wasn’t easy. I had a demanding job and when I was done with my work day, I focused on the household chores Christy could no longer do. But that’s what you do when you love someone. The song by the Hollies best describes our burdens when in service to those we love, “He Ain’t Heavy, He’s My Brother”.

By 2019 she was on supplemental oxygen 24/7 and required a mobility to chair to get around. She never complained; never expressed what had happened to her wasn’t fair. Her attitude was that complaining and self-pity wouldn’t change anything. She always looked forward and never backwards. And because she could do this, I could as well. She embraced life and we adjusted to her increasing handicap.

In the many pictures we took chronicling our adventures, she’d remove the nasal cannula delivering oxygen and would step away from her mobility chair. She wanted people to see her and not her disability. It didn’t define her life. It was a part of it. In 2018, we pushed her in a wheelchair all over Italy and as recently as last October (2019) we traveled to Hawaii. She never looked at her disability as a barrier but more of an inconvenience to work around. We navigated a world together built for able bodied people. It was humbling and the experience taught me lessons I didn’t want to learn.

In the last months of her life, we found ourselves in and out of the hospital. In more than out. The pseudomonas bugs living in her lungs filled them with mucous. It’s difficult moving oxygen through mucus filled lungs. The doctor recommended a bronchoscopy to go into her lungs and suck out the mucous to help clear her airways. Given her condition it was a risky procedure. He told us if there were complications and they had to insert a breathing tube, it’s likely it would never come out. Then don’t put one in, she told the doctor. We all knew that meant she’d died on the procedure table.

The day before the procedure, she told me she planned on calling each of her siblings. “And why is that,” I asked but already knew the answer. “In case they want to say anything to me.” Decoded, “In case I die during the procedure.” We made the calls and let them know about the procedure.

The next day, as I sat with her in pre-op, I worked to hide my anxiety. When they wheeled her away, she looked at me with the biggest brightest smile and gave me a thumbs up. This was intentional, a final gift to me of an everlasting memory of her smile in the event this would be the last time I would see her alive. I was emotionally exhausted and relieved when they wheeled her back into her hospital room and instead of forced oxygen, she was on supplemental oxygen.

“I am so relieved that’s over with.” I said aloud. She looked at me and nodded, “I’m glad for you.” It was an unusual response, so I asked what she meant. She told me, “If I hadn’t woken up from that procedure, I would never know it, but you would.” This was our known reality. I would outlive her, we both knew that, but one always believe you have more time. This was a recognition that time was running out for us and the fragility of her life and the realities that came with it spilled out into the space between us.

She made it home the day before Thanksgiving but spent Christmas and New Years back in the hospital before going to a long term care facility in mid January. In the first week there we were encouraged by her progress. Then progress stop and she started going backwards. “I’m not getting any better,” she said after a few futile weeks of trying to get out of bed for rehab. After a month we agreed she should come home. There wasn’t anything they were doing there that couldn’t be done at home. A medical ambulance brought her home on Valentine’s Day.

So that I could keep her medication regiment on track, I set alarms on my phone spanning waking and sleeping hours. There was medical equipment everywhere. Our bedroom looked like a hospital room. She told me “I never imagined there’d come day I wouldn’t be able to take care of myself.” I said, “That’s what I’m here for.” Hearing my reassurance to care for her wasn’t the point of her comment, that was baked into the recipe of our marriage. It was an acknowledgement of her mortality.

Christy was tiring of the fight. “I don’t know if I can do this.” And all I could says was “Please don’t quit on me.” The next day she apologized and said she wasn’t giving up. Hope springs a eternal. That’s all we had, hope. Christy needed a double lung transplant. There were hurdles to cross to be eligible. By December, she had finally tested 12 months negative for the chronic MAC infection she battled for 5 years. 12-month MAC free was considered “cured”. This was a major hurdle to clear to be eligible, but by now she was ineligible because she was too weak and had lost too much weight to survive the rigor of a lung transplant. We needed a miracle.

Until death do us part

She was home a week from the long term care facility when on February 22 she asked me to take her to the hospital. It was getting even more difficult to breath. She needed more than supplemental oxygen. At the hospital they re-admitted her and put her on a bi-pap machine which pushes oxygen into the lungs. She remained on the bi-pap for a few days. They were able to switch her to supplement oxygen. I took whatever hope I could glean from this sign, but I also asked her if there other people besides our immediate families that she wanted to know what was going on with her health. “Yes” and she gave me a list of names. Talking required too much oxygen. I called the list of friends she gave me while sitting at her bedside and explained our situation. The speaker on the phone was on so she could hear their voices and push out a few words to acknowledge to their best wishes.

On the evening of February 26, I kissed her forehead and told her I’d see her first thing in the morning. This was my routine: be at the hospital at 5am when the doors reopened for visitors, spend a few hours sitting with her, return home to work as a remote employee and head back to the hospital at dinner time and spend the evening.

On February 27 at a little past 5am, I walked into her hospital to find her slumped down in bed wearing a bi-pap face mask. Her eyes were open and she looked like she was staring into a void. I hurried to her bedside frantic and grabbed her hand. What happened in the few hours I was gone? I went into the hall and found her nurse who explained Christy began struggling overnight with decreasing oxygen levels. “Would you like to speak to the doctor?”

The hospital staff at the hospital knew I was her wife. She’d been in so often and for long stretches that we all were too familiar with each other. Whenever a new doctor came by, she always made sure they knew I was her wife, a signal they could talk openly in front of me. The status of wife enabled me to speak for her and decide things, if and when she was unable to do so. We had already entrusted each other with this sacred responsibility as healthcare surrogates even before we married. But in the past before gay marriage was the law of the land one had to produce those documents so that the hospital staff could make absolutely sure you did in fact have these rights to these life and death decisions.

The doctor explained the options. One of them was going on a ventilator. What did I want to do was the question the doctor put before me. I didn’t know how alert Christy was but if she could understand I wanted her to be part of this decision. I asked the doctor if he would join me in the room and tell her what he told me about the ventilator. Her eyes moved about as he spoke. She was trying to look up at him. When he was done, I asked her “Is this what you want.” She nodded her head multiple time to signal “yes”. She understood. “I love you,” I told her and through her bi-pap mask, her muffled response came through, “I love you too.” Another gift she gave to me.

This was the last decision she would ever make. They were mine to make from here on out. They wheeled her into ICU to insert the ventilator tubing. The doctor told me what to expect when the ventilator was removed. She’d likely die quickly. Did I want to resuscitate her if that should happen, he asked me. “No.” I knew her wishes. I would honor them and see them through. I signed the required paperwork. I was her wife after all, so this fell to me as part of our vows.

We romanticize the wedding day, and rightly so because the decision to pledge ones life to another is a beautiful commitment. It is a day of celebrating love. When we say “I do”, we naturally focus on the “happily ever after”. Christy and I had a lot of “happily” in our lives together, but not the “ever after”.

I made the obligatory phone calls in the waiting area. I’d keep her on the ventilator while family made their travel arrangements to join me in this vigil. After the ventilator was inserted, a nurse let me know I could see her. As I stood in the doorway, staring at the and machine breathing for her, I took comfort knowing she wasn’t struggling for every breath. When they put her the ventilator, they slipped a purple wristband on her with white lettering. DNR. Do Not Resuscitate. A decision born out of love and enabled by marriage.

PSA – Two Supreme Court Justices are on the record in their belief that the Obergefell v. Hodges decision allowing for my legal to Christy “the court has created a problem that only it can fix.” The legal status of gay marriage may only be temporary and could be dismantled by the current conservative leaning court.

Feature image by Photo by Sharon McCutcheon on Unsplash

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