After My Wife Died, I Found A 4-Word Text Message In Her Phone That Hit Me Like A Sledgehammer

During the last seven years of my wife Maggie’s life, she suffered from neurosarcoidosis, a chronic autoimmune disease in which the body’s immune system attacks the central nervous system. Each episode of inflammation caused irreparable damage to her ability to function independently. The drugs she took to manage the neurosarcoidosis caused Type 2 diabetes, weight gain, water retention, diabetic peripheral neuropathy and electrolyte imbalance. They also suppressed her immune system and affected her kidneys and liver. Her doctors prescribed drugs to manage the side effects. Maggie also suffered from cardiovascular disease (she had four strokes in less than a year) and pulmonary hypertension, all of which required more drugs. The neurosarcoidosis robbed her of memory, her ability to converse, her ability to work and to drive, and sometimes of time and reality. The strokes sapped her strength and her balance. By the end of her life, she was taking three drugs for neurosarcoidosis, two for blood pressure, three anticoagulants, four for diabetes, one for acid reflux, two for cholesterol and one for water retention. Still, with all the medical burdens Maggie bore, with all the indignities she suffered while being poked and prodded and X-rayed and MRIed and CAT-scanned, what she couldn’t abide was her loss of independence. This wasn’t simply — or merely — losing the ability to jump in the car on a whim and meet friends for lunch.She had behind her a lifetime as a vibrant, inquisitive, gregarious human being; of helping others as a political activist, an ASL interpreter and a social worker; of taking care of friends and family. I think she felt the circle of her world tighten around her as the radius of her independence decreased. She spent more and more time in her recliner, which seemed to become the centre of that circle.The author and Maggie in Brooklyn, New York, in January 1989.I was angry that Maggie didn’t fight back against the tightening of that circle. I confronted her when she refused to take her pills, when I found napkins full of them stuffed behind the recliner seat cushion or hidden in piles of her clothing, when she wouldn’t go for a walk to get a bit of exercise, when I found pieces of candy stashed in hiding places she probably forgot about, when she came home from a dinner so drunk she could barely stand.Why did you…? How could you…? Don’t you understand that…? The doctor told you… I don’t know what I’m supposed to do…I made myself the victim or, sometimes, I’d even turn her love of her grandchildren into guilt.Don’t you want to see your grandchildren grow up?During my exasperated, frustrated rants, she didn’t say a word and glanced at me only occasionally. Even when I told her over and over that I loved her — even when I pleaded with her — she remained silent. If, after I was all ranted out, I knelt next to the recliner, held her, and said, “I love you,” then she would reply, “I love you, too.”What does “fight back” mean when you’re saddled with an incurable disease whose cause is unknown and whose progression can only be “managed”? Maggie was not going to get better — at best, she would not get worse. I wanted her with me, whatever her condition. Maybe “whatever her condition” was not a quality of life she wanted for herself. Did I, who was not ill, have the right to demand that she fight back? By doing so, was I claiming that I would have fought back if I were in the recliner, in effect telling her that I was better than her? And, perhaps most important of all, by making her feel guilty about not doing more to take care of herself, was I reinforcing in her mind just how much independence she had lost? Maybe not taking her pills was her way of asserting what little independence she had left. Maybe hiding candy was her way of squeezing little bits of pleasure from a life that seemed less and less her own.I justified my pressure on Maggie by telling myself that her neurosarcoidosis affected her decision-making ability. That was true. But was it entirely true? Maggie made plenty of decisions that seemed reasonable: She decided she wanted to go to the dollar store; she decided she wanted café con leche y tostada every morning; she decided to call her sister to chat. If it was not entirely true, how true was it? Was it true only for decisions she made that I disagreed with? If so, then my justification was an excuse for my frustration. I didn’t know where to draw the line, or whether a line could be drawn. I tried not to be so much of a helicopter husband. You can’t help someone who doesn’t want to be helped, I told myself. This is true. but also cruel. Maggie wasn’t a passerby who didn’t want my help picking up keys she had dropped. She was the love of my life. We were together — willingly — for 36 years. We had zinged (see Hotel Transylvania). All of these questions disappeared — temporarily — when Maggie had a stroke on Saturday, 24 August, 2019. I was on the couch in the living room. I walked toward the bedroom and called “Good morning” to her. She didn’t respond, which was odd. I walked into the bedroom. She was sitting in the recliner. I looked at her and knew what had happened: Her eyes were wide, her speech was unintelligible, and her movements were uncoordinated. The stroke must have occurred just as she was putting her leg in her pants because she was stuck in that position. My reaction probably caused her anxiety; I don’t think she was aware of what was happening to her until she saw my face. She still had some consciousness when the EMTs arrived because she saw them and made a crying sound. By the time the EMTs got her in the ambulance, she was unconscious."This was Maggie’s last time in the hospital (August 2019)," the author writes.Maggie and I are sitting in a lawyer’s office on May 17, 2017. We are getting our “estate” in order. She is 63 and I am 64. Maggie had been ill for five years and I had had a heart attack the previous October. Taking care of the legal stuff seems prudent: designation of health care surrogate, inter vivos declaration of trust, last will and testament, warranty deed, living will, durable power of attorney. Maggie signs her living will and I sign mine. I designate her as my health care surrogate and she designates me as hers. Two months and $3,000 later, it’s done. I know what a living will is. As the saying goes, there’s an app for that. Neither of us wants to be kept “alive” by machines. A living will? Of course. Easy. We’ve got that covered. We stop for lunch on the way home. During her 10 days in the ICU after her stroke in 2019, life left Maggie bit by bit, organ by organ. At first she was breathing on her own, but the attending physician was not hopeful. Severe strokes like hers, he warned, caused too much damage for the brain to recover. Days later, Maggie had to be intubated to get enough oxygen into her lungs, but she was still breathing on her own. On Monday, 2 September, Maggie’s body began to shut down. Because not enough oxygen was getting into her lungs, her heart was working too hard to pump an inadequate amount of oxygen around her body. The nurses gave her medicine to increase the rate of oxygen absorption. When her heart rate decreased, they gave her medication to stimulate it. She developed pneumonia, which happens often in hospitals, but which was more dangerous for her because her system was immunosuppressed, so she received antibiotics for that. She couldn’t cough, so they inserted a vacuum tube to remove the phlegm from her lungs. Her kidneys weren’t removing enough liquid, so they prescribed more drugs. Her liver was having a hard time removing all the drugs they were giving her, so they gave her a drug for that. They kept turning up the ventilator until it couldn’t pump more frequently or at a higher pressure. She was no longer breathing on her own. At around 4:30am on Tuesday, 3 September, I said, “Stop.” A nurse brought the DNR. At that moment, my theoretical agreement two years earlier to be Maggie’s health care surrogate crashed into the reality of staring at the line where I was to sign my name. I had been awake for more than 24 hours, watching nurses coming to Maggie’s bedside with ever-increasing frequency, doing their best to stop her body from doing what it was inexorably doing. I’m doing what she wanted me to do, I told myself. If I didn’t do it, a doctor would do it eventually, but she wanted me to do it. I signed the form with the same name I use to sign checks and credit card receipts. Somewhere in the bowels of the hospital’s memory is proof that I told the nurses not to try to keep Maggie alive. Why was that moment so ... ordinary? Three years would pass before I could tell anyone what I had done. The nurses asked me to leave the room while they removed the IVs and PICC line and heart monitor and blood pressure monitor and ventilator and pulse oximeter and intermittent pneumatic compression device and urinary catheter, and changed her bedsheets and hospital gown. Maggie looked asleep and pale.The author with Maggie and his children (from left to right) Daniela and Cristina in September 1993.I called my daughters, Cristina and Daniela, and my sisters-in-law, Dominga and Maria, who were staying at our house. I didn’t reach Daniela, who was in Hawaii, until later in the day. I told Cristina to come to the hospital right away. I had to call her back because I forgot (how?) to tell her that her mom had died. I didn’t tell them that I had said “Stop,” only that Maggie had died. My ears were ringing. I felt like I was watching a movie through my eyes but the camera couldn’t quite focus. I was numb. I couldn’t cry. Even when Cristina cried on the phone and then again at the hospital. Even when Maria broke down in the hospital room. Even when Jessica, Cristina’s friend, came to the hospital, crying. I started to ask her why she was crying. Even when Daniela cried on the phone when I told her later that afternoon, I couldn’t cry. A couple of days later, Cristina and her sons came to the house. My grandson Anthony was crying and I started to ask him why. I remember thinking to myself, Why am I acting so strangely? and having no answer to the question. But the dam did burst. In the flood of emotions, all my questions about Maggie’s quality of life came roaring back, but now they were burdened with guilt. I should have done more of what she wanted to do, even if that meant taking her to more dollar stores, I told myself. I should have done less arguing and pushing. I should have been more attentive, more caring, more loving. I should have told her more often that I loved her. I should have been less concerned with what I wanted from her, and more concerned with what she wanted from life. In the days after her death, I found a text message from Maggie to one of her sisters that read, “My friends have disappeared.” Those four words hit me like a sledgehammer. Maggie was a hoarder — our bedroom, especially, was full of ... things. Piles and piles of things. Shelves and drawers full of things. At some point — probably at a moment when I was particularly frustrated with her seeming indifference to her own health — I told Maggie I was going to sleep on the couch in the living room because the mattress was uncomfortable and the room was a mess. At a time when Maggie felt that she was losing her friends, I moved myself out of our bedroom. I put my feelings ahead of hers. Was I punishing her? Instead of buying a new mattress and putting up with the mess so she could put her head on my shoulder while she slept, I made her sleep alone. She never said a word. The author's grandson Jovani, daughter Cristina, son-in-law Sandro, Maggie, grandson Justin, the author, daughter Daniela, grandson Anthony, and A.J. the dog in Miami, Florida, in December 2014.We held a memorial for Maggie on Saturday, Sept. 14, at the community center in Biscayne Park, not far from our house. I gave the eulogy. I was wrung out. I couldn’t talk about my feelings of guilt, of self-loathing, or about the DNR. That was OK, I told myself, because the eulogy and the memorial were about Maggie, not about me. But the guilt was an unbearable weight on my soul. Cristina and her family and I flew to Puerto Rico on Sept. 20 for a memorial for Maggie at Dominga’s house in Vega Baja. The family went out to a Chinese restaurant. I wasn’t up to it. I laid in one of the beds in our Airbnb and when the family left, I cried. Then I wrote this poem:What do I do now? I need to take care of you. Daughters, grandsons, family. They have each other — Cousins, husbands, brothers, boyfriends.I don’t have you. I don’t have you. I don’t have you. What do I do now? My days are filled with no Doctors appointments no Farmers markets no Dollar stores no Hospital vigils no Helping you up the stairs no Making cafe con leche no Arguments about Corona no Watching you so unhappy no Trying to make you smile. What do I do now? I have to fill your pill box, But the vials are empty. I have to take your pressure,But the cuff is empty. I have to wash your clothes, But the laundry basket is empty. Everything is empty. I am empty. How can I fill my emptiness With something, If my emptiness is The shape of you? What do I do now? I need to take care of you but I don’t have you I don’t I What do I do now? A photo montage of the author and his wife, Maggie, created by their daughter, Daniela Spector, in 2023.Five September 3rds have passed since Maggie died. I’m managing my guilt. Images and memories still have the power to make me wince, but they no longer immobilise me. I don’t want the guilt to go away. It reminds me that I added to Maggie’s sadness. I did that. She was the victim. Do I have the right to forgive myself? Intentionality and proportionality seem weak arguments when confronted with the historical record.I don’t know whether I can do this again. Is it possible to love someone without hurting them? Without hurting them when they already hurt? Maybe love isn’t enough. But it’s all I have. That’s the scary part.When I was barely out of my tweens, Dad would send me out on cold winter mornings in Fort Greene, Brooklyn, to start the car. It was a used car (he only bought used cars) so getting the engine to turn over took time and effort — all of it unsuccessful — until finally it happened. I’m trying to start that old car.Danny Spector is a writer, a retired geologist, and a red diaper baby. He raised two wonderful daughters, Cristina and Daniela, with the love of his life, Maggie, who passed away in 2019, and now basks in the glow of four grandsons (with a granddaughter due in May). He is the author of the weekly Thoughts-Letter (thoughtsletter.substack.com), his outlet for fictional and nonfictional musings. Some people actually read it.Related...'My Wife Wants Me To Become A Stay-At-Home-Dad. Are My Financial Terms Fair?''I Haven't Slept With My Wife For Weeks Because Of Her Bedtime Habit. Am I Wrong?'I Tried To Save My Neighbour's Life With CPR. After He Died, I Got A Text From His Wife I Never Saw Coming.

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