My husband had a brain tumor. In the summer before he was diagnosed, he acted very weird. Very off-center. It was perplexing. I thought he had fallen out of love with me or was having an affair. I also feared early Alzheimers. The personality change was very upsetting. He was fine for his birthday in May but was exhibiting “oddness” on Father’s Day and grew progressively worse until the middle of July. Then he returned to his old self. Then he was gone again for a couple of weeks and then back again. His boss noted his oddness. Everyone noted it. No one was sure what it meant.

He had a seizure on September 16, 2008. Three years ago today.

On that day, my life changed completely. I knew that something had been wrong, but I didn’t know what.

He was rushed to the hospital where he continued to seize and then taken to a bigger hospital where they intubated him and put him in medically induced coma. For the first week or so, I sat there not knowing what was going on, staring at the plain walls of the NeuroICU. I agreed to a spinal tap and then to brain surgery to find out what was going on. The masses in his brain were so large on the x-ray that no one thought they could possibly be tumors. No one could be walking around with that much tumor mass in his head, said the doctors. It covered almost the entire right side and some of the left side. We hoped that they were right. We hoped it was a virus and he would take some medication and be well.

That was not to be. A week or so after the brain biopsy, they delivered the stunning news to me. He had 3 anaplastic astrocytomas, they were inoperable and he had a life expectancy of 3-6 months.

There is never a time when I recall that conversation that I don’t break down in tears. That was the day my life changed. People in my mother’s generation divided their time into before WWII and before JFK’s assassination. For the past 10 years, people divide their lives into before Sept 11 and after Sept 11. I divide my life between before Michael got sick and after. Even on the anniversary of 9/11, when people were talking about where they were and what was said, I thought of Michael waking me up (we lived in California) to tell me about the first plane.

When Michael took ill, I could not fathom being without him. When I met him and throughout our marriage I was strong, independent, and secure. But knowing he was there, letting me be me and him being him, was just one of the greatest gifts of my life. All my life, I had been alone and never felt loved or cared for until met Michael DiCarlo. He was the only person in my entire life, including my parents, who ever took care of me. Who ever gave me gentle, tender, loving devotion. Who simply adored me.

In 12 years of marriage he never made me cry…but now the news of his survival chances rendered me near-hysterical. I couldn’t stop crying. I’d never been much of a crier when met with hurt or bad news. I always put up a good front and then quietly collapsed in my own private room. But this time I sobbed openly and without control. How could you take this person from me?? HOW? He was the only one who ever truly cared about me. EVER. He was the only person who was consistently there for me. He was my rock, my support, my wonderful wonderful partner through thick and thin, through good times and bad…

I didn’t meet him until I was 39 years old. How could he leave so soon? HOW?

As most who have read here know the story after his dreadful diagnosis was given to me: I took care of Michael for the 11 months and 1 day he lived. After he started treatment, the old Michael came back. There was a time or two that he uncharacteristically yelled at me, but for the most part he came back. There were days he was completely adrift in another world but so many days he was there and present. Smiling, happy. He was the sweetest person I’ve ever known. And he had loved me and I could not do enough for him. For richer and poorer…yes we had been there on both ends…now it was sickness and in health…I would be there in sickness…I would be. I would learn to be. I had to. This was a man who loved me. If I had gotten sick, he would do it for me. When I had my car accident, he helped me do everything when I got home. He was a rough and tumble little guy but when he helped me do things, he was incredibly gentle and thoughtful. He would have done anything for me, and now I would do it for him.

I have never been the nurse-y type. I’ve never done well around sick people. I’ve always been flummoxed by how to treat people who are really sick. I was always unsure.

With Michael I worked hard every single day to give him the very best care I could. To show him, day after day, hour after hour, how much I loved him. The hospice nurse told me she had never seen such love between two people.

There were days he acted completely irrationally and days he didn’t know who I was. He took strange turns that I wasn’t prepared for. Once he wandered away from me in a supermarket and I found him eating at the salad bar. Scooping up vegetables and stuffing them in his mouth. When I tried to pull him away, he was yelling at me and everyone was staring. Another day he opened the door and got out of the car before it had stopped moving. I had to put the child safety locks on his door.

There was a day when I ran into the drug store and came out to find the toughest man I’d ever known shaking like a small child with a look of terror on his face. I said, “Honey, what’s wrong?” and he said, “I didn’t know where you were…” It broke my heart. This man who made me feel so secure for 12 years had to feel secure…I had no idea when he turned child-like in his fear, but it was there and it was my job to soothe him…as he would me if the positions were reversed. This is a man who cared for his family. Who believed it was his job to care for his family. He was a standup guy, a non-complainer, a rock. I didn’t reject him when he turned into a scared little boy. I didn’t say “Oh you’re of no use to me now!” I loved him MORE. Because love is what love does. And that is what I did. And that is what he would have done.

There have been many times I know that Michael might have been flummoxed dealing with the doctors and hospitals. I know he would not have been as assertive as I was. The doctors and nurses tended to run the other way when I was coming. Here comes Michael DiCarlo’s pitbull of a wife…flee!!!! I advocated for him not giving a damn what they thought of me. And when I saw them giving the run-around to other families on the oncology unit, especially those for whom English was a second language, I advocated for them too. If I was waiting for tests and was promised the results and they didn’t come, I would call the nurse’s desk at midnight and demand to speak with the resident. They learned, quickly, to call me back and not to blow me off when I was waiting.

I always had some hope of a miracle cure. I always had some hope that somehow some way they would find a cure or a treatment for these menacing tumors before Michael got too sick. When he passed the 3 month mark, I wondered…when he passed the 6 month mark, I wondered. He was bedridden and taking care of him was not easy, but I had live-in help during the week and the kids helped a lot. I wondered if he would go on like this for years or if he would just drift out one day, mentally, and never come back but his body would still be here. His hospital bed was in the family room and the family came over a lot to see him. The kids would run by and wave at him, “Hello Grandpa!” and he would smile and wave back. If he could have 1000 more moments like that, I would love it.

Michael’s brain tumors were so advanced BECAUSE he was so strong. His constitution allowed the tumors to grow undetected where another person may have seized or had some other outwardly symptom when the first one started growing. The doctors said they could not believe he was walking around with those tumors. So perhaps he would outlive all of their progonses and stay with me. In sickness and in health….

True love is rare. It’s a rare and beautiful thing. As I’ve said, there was no one before Michael who loved me like that. There were men who loved me and treated me well but no one like that.

Whenever I read anything where someone is opposed to gay marriage, I always have to wonder how you could have so much prejudice in your own heart that you would deny another the love in theirs? I think about my union with Michael. Neither of us thought we would marry again. Neither of us thought we would be in a serious relationship again. We both had had it. But within weeks we knew. You are the one for me. Forever and ever. That is never wrong. If you say it and you mean it and you work at it, it is never wrong.

We could not wait to get married and if someone said I couldn’t marry him, I wouldn’t know what to do. I couldn’t imagine that someone else would have ever denied us the commitment we had emotionally, mentally, physically and legally. Who has the RIGHT to deny that? WHO?

No one.

I had a hard enough time in New York, a medical proxy state, advocating for him and chasing down doctors. The card I held was I was his wife. We were legally married. It’s not just a piece of paper. When you are facing down the medical establishment you need that paper and that status so that you can demand answers and hold people accountable. Had we not been married or married in a “civil union,” I don’t think I would have had any status at all. And as the person who loved him more than anyone else and looked out for his welfare more than anyone else, that would not have been right. We needed the piece of paper. I need it. To advocate, to be able to be involved in the discussions, to be the person to receive the news. It had to be me. I had to have had standing. I can’t imagine this whole thing without it.

People who are committed to each other need that piece of paper, they need to vow “in sickness and in health” and to be recognized at the one everything gets filtered through. And I do not understand anyone who could be against that simply because two people have that love but are the same sex.

I cannot understand how love can be so rare, life can be so short, and some people spend it putting energy into trying to deny others their commitment to each other. Nothing (other than parent/child bond) is stronger than the bond of true love between two people. And no one who has found true love should be forced to deal with the idiots in this world who don’t like the form it’s in. True love is true love. Between a man and a woman, a man and a man, a woman and a woman. It is what it is. And it’s none of your business. Get your nose out of other people’s bedrooms. And then get your head out of your ass.

After having lost the love of my life, and living with that pain every single day, I can’t imagine ever wishing anything but happiness and long-life to anyone who has found true love. I can’t imagine, having known true love and having lost it to cancer, being so petty and so horrible that I would try to deny someone else love and happiness….it’s downright immoral if you ask me.

And then we have the same people saying marriage is between a man and a woman. Unless the woman has Alzheimers. Then, screw her, dump her ass.

Let me tell you something: If my husband didn’t know me from a rutabaga, I would have stayed and cared for him for the next 30 years. The man was devoted to me when he had his full faculties and even on the days when he was lost in the hazy world of brain tumor patients, he knew my touch. He knew my presence. And he knew I cared for him. And for all we were and for all we gave, that is how it should have been.

Even on the days he was not with it and didn’t really recognize me or make sense, my presence calmed him. He knew, on some level, all was okay. He knew it…and unless you’ve been with a family member who has experienced this, you can’t speak to it. Michael knew I was there and it calmed him even when he couldn’t verbalize who the hell I was. There is something like muscle memory…love memory…when you know that you are surrounded with love. And he was. And he knew it even on the days he didn’t know much of anything. He knew he was loved.

He could have been completely out of it and when I came and sat down by his bed and held his hand, I could see his breathing calm…I could see his face relax. Even completely out of it…he knew I was there. And all was okay.

If he lived to be 98 instead of dying at 58, I would have devoted those 40 years to him even if he didn’t know me from a jar of mayonnaise. The thing is: I knew him. I knew who he was. I knew what he had been. I relive those memories every single day and he’s not here. If he were here, I’d still be reliving them and loving him every moment of his life. Because he deserved nothing less.

Michael’s decline started about 3 days before he died. He was non-responsive and was given morphine to help with his labored breathing. He was at home and I was with him. I spent hours by his bedside just holding his hand. I slept on the couch next to his bed. I leaned over and grabbed his hand in the middle of the night. A time or two he squeezed my hand, but for the most part he just lay there.

On the last morning he opened his eyes and stared at me, I held his hand, I told him it was okay. I rubbed his arm. I never let go his gaze until just after noon when he closed his eyes and he was gone. I put my head on his shoulder and sobbed. I know that even through the tumor haze, the morphine, the tugging by death, he knew I was there. Knew I was there and that I loved him. I know he knew that. I know.

And if I had divorced him because he wouldn’t know the difference, then shame on me. It’s not easy to care for someone who fades in and out, but you don’t condone throwing them aside like so much rubbish.

I do not understand how anyone can be against gay marriage AND for divorce if a spouse has Alzheimers. It means, to me, that there is much hate in their heart. That they don’t know what true love is or what it’s worth. That they put their own stupid parameters on someone else’s life. How dare you. How f’ing dare you. You have no right to opine on these things. You have no right to decide these things.


Love is as love does. Love is an action.

If someone loves someone deeply and completely, they should be able to live their lives with no opinions or interjections from anyone else. Love is rare, life is short. Don’t screw up the time someone else has because you don’t like the gender of the person they choose to love. You have no right, no matter who you are, to interfere with the happiness and love of another human being. You simply have no right. Go live your life and let others live theirs.

You have no right to preach that certain types of union are detrimental to marriage while encouraging spouses to just ditch their spouse suffering from Alzheimers. Soon you’ll be excusing divorce if someone gets a cold. It’s a slippery slope, remember? That’s what you told us when you went all anti-gay marriage on us. Slippery slope.

Let me tell you what is NOT a slippery slope whether it’s dealing with a sick spouse or committing to someone under the law. True love.

That is not a slippery slope. So please take your slippery slopes and stop trying to impart them on others when you feel like it. It’s none of your business. You have no right to say who can get married and who can get divorced.


You have no right to insert hate into a story about love. You have no right.

Three years ago today my life changed because my husband had a seizure. I would lose him less than a year later. I miss him every single day. Every single day. And if I had the ability to still be caring for him, I would be honored. Not in a martyr kind of way but in a “I truly loved him and even when he was out of it, he needed to know I was there.” And he deserved it.

That man put “love is an action” into action every day he was with me and I would do so every day of his life whether that life lasted 11 months, 11 years or 41 years. I would do it. It’s what you do.

Life is terribly and horribly short. Life is hard. The road is rough. Love softens it.

Whether it’s same-sex partnerships that you object to or the partnerships where one person has a debilitating disease, it’s not yours to object to. Mind your business.

Live. Laugh. Love.

Everything else is besides the point.

Peace.

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