I Will Protect Him Still

TUESDAY, APRIL 26, 2017


There’s nothing you can ever do to lose my love. 
I will protect you until you die, 
and after your death 
I will protect you still. 




There are a lot of true things I could say about John's death.

It was tragic.
It was unexpected.
It was terrifying.
It was infuriating.
And mostly, it was utterly heartbreaking.

I don't need to point those things out. Anyone who knew and loved John would probably recite that list as well. But here are some more things that are equally true.

John is not at fault for his death.
John did not give up. 
No single person or circumstance could have 'saved' him.
No single person or circumstance was responsible for his death.

And John's death was definitely not a sign that he was selfish. 

I do know that many people will ask, if those aren't the reasons he died - then how could this have happened? The question itself has to do with generally accepted preconceived notions about suicide. Many of these notions come from a place of not knowing. Not knowing what it feels like to be the one who wants to die, and not knowing what it feels like to be the ones left behind. 

But me? I know a little. I've attempted suicide. My mother died by suicide. John's own brother died by suicide. One of my very best friends' brother died by suicide. When my son was in middle school, one of his close friends died by suicide.


And if there is one thing I can tell you, it's that the preconceived notions about suicide don't reflect the truth. 
John Macaluso was a vibrant, caring, cared about man. It's nearly impossible for me to accept that he is not here anymore. I keep expecting him to turn a corner and appear. I spoke to John every day and saw him nearly as often. When my phone rings I still look down to see if he is the one calling. My heart leaps a little, just as it did when he was alive, in the hopes that I am hearing from him. It's only been a few weeks. I can't imagine that I would feel any other way. I don't want to feel any other way. 

Sometimes I think of what it was like when he was alive and I knew he was on his way to me from somewhere. Maybe from the gym or his house. Maybe he was coming from a visit with his parents. It didn't matter - the feeling was the the same. It was warm and sweet, when John wasn't with me but I knew he was on his way. 


There was an anticipation and beauty in those moments that I never want to let go of. Sometimes I wish that I could just live in that moment now, the one right before his arrival. If I can't have John, then I will live in this in-between place of knowing that he is on his way and that I will see him soon. Because that place is bearable. 


There are days when I think that I will willingly wait for him to turn that corner, forever. 


I've been in grief before, but this is a grief like no other. And because John's illness was a mental illness, I now have to deal with people who are standing in judgment of the toll his disease took on our relationship. They see our struggles as a series of bad choices that we each were making. But 
I see it differently, because I was there. I know that every decision I made to stay with John when he was fighting to overcome his illness - was the right decision. Every time. And I never stopped wanting John to be well. I believed he and I had a future together. He believed we had a future together. 


There is a lot of heartbreak to go around here, but blame is only compounding the situation. In the end, it was a disease that ended his life, one that was vicious and cruel, and for John, it was insurmountable. 

There are people who ask me how John died, and I want to say this: "He had bipolar disorder." 

I shouldn't have to say more.

When a person has a heart attack, you don't say:  "His heart stopped beating and as a result, oxygen stopped flowing to his brain."

You just explain - they had a heart attack.

And you certainly don't say: "His heart stopped beating and he then made a choice to stop the flow of oxygen to his brain and because he was so selfish, he died."

We don't say that about the heart attack victim because it would ignorantly suggest control that the victim did not have, and it contains an unconscionable accusation.

So I will tell you this - to suggest that John made a choice to die and that he did so in part because he was inconsiderate or selfish, is both ignorant and unconscionable.

Yes, there are things that a person dealing with mental illness can do to manage their illness. Thankfully, the disease is not fatal for everyone. Not all mental illnesses are the same. Not all bipolar people exhibit symptoms that are as severe as suicidality.

But part of John's bipolar disorder included suicidal ideation. The emotional pain that he felt was excruciating at times. He was not unusual in this - sufferers of such severe bipolar symptoms are often so desperate for relief - death can seem like the only viable option.

Bipolar depression can be so debilitating that the perspective of the sufferer narrows and the ability for the person to remember what it was like to be stable - much less to believe that they will be stable again - is severely compromised. These are components of the disease. They are not born of a victim's stubbornness or ingratitude. Telling a sufferer to buck up or to start appreciating 'everything good in their life' - is both cruel and ineffective.

John's disease first appeared when he was twenty years old. And yet, he held on for over a decade. I know for a fact - because he told me - he never wanted anyone else to suffer if he died. I've said it before and I will say it again - John did not die because he didn't love other people. It was exactly the opposite. John lived for so long, because he loved other people so much.

I can't protect those who loved him from the grief inherent in his loss. My heart breaks for us all.  But I can do what I can to protect John from so many misconceptions about his illness.

I loved John. I love him still. He was a brave and caring man. His bravery and concern for others is beyond that which many of us will ever be able to comprehend. 

We do not call heart attack victims selfish because of the failing of their heart. Do not call John selfish because of the failing of his thinking.

Do not call John selfish.
In the two months leading up to John's death, I watched as he got sicker and sicker. It was hard to have a coherent relationship with someone whose reason and emotion was so often hijacked by a severe mood disorder. John was wonderful. His disease was not. I was in love with John. I was afraid of his disease. So we struggled and our relationship often reflected that struggle.

The week before he died, we were together and seemingly out of the blue he said to me: "You're a survivor Chelise. You will always be ok. You will survive."

I got mad. "What are you talking about?" I snapped at him. It sounded to me then exactly what it sounds like now.

"You aren't thinking about suicide are you?" I asked.

John demurred then. "No. I mean no more than usual," he said.

"John, promise me you aren't going to hurt yourself. Promise me that you won't try to kill yourself!"

I said those words to him. I said those very words to him a few days before he died.

"I promise."

That was his reply. He promised me.

A week later I would yell that into the air. I would yell those words into my memories of him. I was so mad. 

"You promised me! You promised me! You promised!"

I have to carry that around with me. The fact that I didn't do more. That I chose to believe a promise that he wasn't capable of making.

And I want him to know that he was wrong - I am not going to be ok. I wish I could tell him now. I will never be ok.

I wish that a promise to me could have been enough to heal his pain. I wish a promise to me could have been enough. But I can't expect someone to promise me that they will never have a heart attack. I can't ask someone to promise me that they will never get cancer. Still, I wanted his promise to be enough to keep the escalation of his bipolar disorder at bay.

I want to yell at him. I am not going to be ok!

I have a son, though. I have reasons to live. So, John was also right. I will survive. 

John's death will never be ok, and I will never be the same. There is such a big piece of my heart that belongs to him permanently. I will not venture to take it back. His disease may have taken his life but it can not take my love from him, and it can not take his love from me. That I can promise you.

I promise.



John was stable the first few months we dated. The first time he did have a major depressive episode with me, I was confused. Circumstances between us were really good. We were in love. We'd told each other we loved each other. We were still in our dating 'honeymoon' stage.

Still, one day John turned to me in tears.

"I can't stop wanting to die." He told me.

I was shocked and worried. He told me that his feelings were even more upsetting to him because he'd hoped that being in love was going to be enough to hold off another episode of being suicidal.

Even then, I knew that this was not a reasonable expectation of love. I knew it was not possible for the joy in any relationship to combat an unrelated chemical imbalance in someones brain.

Still, underneath the intellectual comprehension, I shared his disappointment. Why wasn't I enough bring him a happiness that would solve everything? How could he be thinking about death while holding me in his arms at the same time? The intellectual understanding not withstanding - I carried that disappointment and frustration into the rest of our relationship  Fair or not, the feelings were there, and the seeds of resentment toward his disease were born.

As the months went by, he had many periods of stability. He and I shared more with each other and we fell even more deeply in love. Yet, this did not assuage my fear that it was because I was not good enough that mental illness continued to plague our relationship.

In the months before John died, I was no longer able to support him when he was sick. Counselors told me to distance myself. Not from John, but from his illness. A friend pointed out that separating out the healthy John from his unhealthy behaviors might be impossible. And the preservation of my own mental health told me that I needed to detach from John when he was sick.

Detaching and distancing was very difficult. John was my best friend. He was my constant companion. He was my true north. And, we were still in love. John and I never fell out of love.

My efforts at managing the impact of his illness on my life were sloppy and jarring.


I tried telling him that I wouldn't talk to him about serious things if he was doing poorly - because, I explained to him - when he wasn't doing well he was unreasonable and quick to anger.

I told him I wouldn't spend time with him if he insisted that we spend that time with me sitting beside him in his darkened room while he suffered and isolated. It was too overwhelming and painful for me, and I told him I wouldn't do it anymore.

I told John that the extent of his illness - when he was sick - was too much for our relationship to bear. Then, a few weeks later, I told him that leaving him was too much for my heart to bear. I was inconsistent and perhaps unfair to him. He said he was willing to let me go, and then he said he wanted me back. Nothing was easy, and nothing was over.

A week before he died, we fought. He was angry about something and said hurtful words. I reacted poorly. I cried. I yelled. I blamed him and I enlisted the opinions of my close friends to hammer home the fact that even others thought his behavior was unreasonable. He was hurt and humiliated but he also tried to apologize. I was so angry - I refused to accept his apology. These facts are a part of the last days of our relationship. A part of our last days together.

For the rest of my life, I will have to live with the fact that I humiliated and hurt him during the last days of his life.


All during this time, John was isolating regularly. He was confiding in some people that he was struggling, but telling no one to what extent.

A few days later, John told me that he was still ashamed of the hurtful words he had said to me. He said that he didn't feel like he was going to be able to manage his illness well enough to be fair to our relationship.

I didn't argue with him. I didn't try to convince him otherwise. I had already told him I wasn't going to have these types of conversations with him while he was doing so poorly. I wanted to give him the time and space he needed to find his way back to stability.

I did not tell him that I would wait. I did not tell him that I believed in him. I did not tell him that my own heart would be broken beyond repair if we really did stop seeing each other.

I did not tell him, and for the rest of my life I will have to live with the lack of those words.


I was tired of fighting with John's illness and on some level, I laid down my arms and let his disease win that round. I had no idea what was at stake. I had fought for him so many times, but this time I did not.

For the rest of my life, I will have to live with not having fought for him on that day.

For all my trying, I don't think I was ever as determined to step away from John, as I was in that week before he died. I repeatedly told him that I wouldn't talk to him about painful things.

He asked me to reassure him that I thought he was handsome. He asked me reassure him that I thought he was smart. He asked me to reassure him that I cared. Again and again. Multiple times in one day. But he couldn't take the reassurances in. Finally, I told him I wasn't going to keep reassuring him because he couldn't hear me anyway.

He would want to come to my house, or he would want to go for a drive. No, no, no, I kept saying. It wasn't that I didn't want to be with John. It was because when he was so sick - he was unpredictable.

John Macaluso was a wonderful, sweet, and gentle soul. His compassion exceeded that of most people I know. But when he wasn't doing well, he wasn't as kind. I had grown to be wary of his reactions and I was afraid of his anger.

But, with every new boundary I put in place, every assertion on my part, and every explanation I gave - John's illness made it impossible for him to process the boundaries as anything other than rejection.

Our arguments over these issues were heated. A few days prior to his death, I got upset about something and couldn't hold to my resolution that we not talk about serious things. Once again, I cried. I yelled. What I was really doing was crying and yelling at his disease - but just like my friend had suggested, separating John out from his illness had become nearly impossible for me. 

Eventually, I apologized to him for my anger. I did apologize, and he heard me. I reminded him that I loved him and that all of this was really hard. He thanked me for apologizing. He agreed that this was hard. 

I am so glad I made that apology. 

There were so many times - even when he was struggling - that John was the better person than I. In those final days, I am so glad that he was unlike me, and that he was willing to hear my apology when I offered it.

There were many times, even when John was struggling, that he was the better person than I

No description of John's illness or who he was in my life would be complete without pointing that out, because it's true.

And this deserves to be said too. For every boundary I'd ever put in place, John was willing to break down his own boundaries, for me. He was always stronger and more willing to do that than I was. He took my calls any time I was distraught. He would drop everything and come to hold me or hug me, anytime I asked. Sometimes I'd have a nightmare in the middle of the night. I'd call him and he would always answer. No matter the time. He would remind me that I was safe, that I was loved, and that it would be ok.

On the day of his death - after I was told, I was hysterical. I couldn't breathe. I couldn't see. I couldn't think straight. "Someone call John!" I kept saying, even though I knew he was gone. 

Over and over again. "Someone call John!" I cried, I yelled, I pleaded. Even though my pain was because he was gone, I still knew that he was the only one who would be able to comfort me. I knew this. John was the only one.

My friends and my son stood beside me, not knowing what to do.

"Someone call John!" I cried, until my son stepped over and put his arm around me. 

"Mom." He said, quietly. It was all he said. Mom.

That's what finally calmed me down. It was my son, reminding me with just one word who I was to him, why he needed me, and why I would have to survive.

The last time I saw John in person was two days before he died.

We weren't arguing. We weren't talking about anything of consequence. Suddenly he turned to me.

"I'm sorry I failed you," he said.

"You didn't fail me." I told him.

"I'm sorry I failed our relationship then."

"You didn't fail anything," I tried again.

"I'm sorry I'm such a disappointment." John replied.

I shook my head. I sighed. I stopped contesting what he was saying. Not because his words were true, but because he wasn't hearing my replies.

Some people who loved John have told me that they are stuck in the pain of wondering how it is that they didn't see this coming.

My agony is different.

I should have known.

Every word he said. Every clue he gave. Every tear he shed and every rejection I offered in reply.


I can not lift the guilt of now knowing what I did and what I did not do. The unbearable memories of how I handled things at the end. There are days when I have no idea how I myself will go on. There are days when I don't want to go on, and days when I am certain I don't deserve to. But then I remember John's words and no matter how angry they make me, I know they are true.

I have a son. I have reasons to live. I will survive but I will have to learn how to do it without John at my side.



Over the past decade, the fatality rate associated with first time heart attacks has steadily declined. At present the rate of death for those having a heart attack fluctuates between three to five percent.

But for those who are diagnosed with bipolar disorder, the rate of death is closer to twenty percent.

Twenty percent.

The people in that demographic - those who die because of their bipolar disorder - are not dying because their hearts are broken. They are not dying because they lost a job or got in a fight with a friend. People with bipolar disorder are not dying because they aren't attractive enough or loved enough. They are not dying because they are seeking a 'permanent solution to a temporary problem.' If you are questioning how a person could die when 'they have so many things going for them' - then you are asking the wrong questions.

Twenty percent of the people with bipolar disorder are dying because the disease can be fatal.

This is the truth. Statistics bear this out. Research bears this out. And evidence both anecdotal and more formal in nature bears this out.

When it comes to bipolar disorder and death by suicide, no single person or circumstance can be blamed. And no single person or circumstance can save someone.

I've been told this. I know this. I know that this applies to all others. I do.


Still, in my case, the struggle to dismantle my guilt is overwhelming.

And, I am also having to contend with someone John and I both knew who is publicly telling people that I am the one to blame for John's death. She wants the world to know that I am the one who is to blame for all of his unhappiness.

Given the timing and the situation, the insensitivity and cruelty is beyond comprehension. The irony though, is that I debate the truth of what she is saying, every single day.

What have I done?
What could I have done?
What should I have done?

Everything I did was all wrong. Perhaps it is in this certainty that I come as close as I ever will to John's excruciating emotional pain.


So, I won't try to defend myself.

But of the accusations, I will speak up for John. I will speak up for his closest friends and I will speak up for his family.

Because those that truly knew him will tell you that John was capable of managing a love relationship. He struggled with romantic conflict and misunderstandings like any person might. But he was also strong and loving. John was rational and even tempered.

I knew him. I was in love with him. He was in love with me. So I can tell you this. John Macaluso was capable of handling the complications of our relationship, and when he was well, he did so with grace and compassion.

John was the product of a loving and supportive family and he was cared about by many lifelong and loyal friends. These were the people who influenced John and who shaped the man he would become.


I may not have the energy, wherewithal or mindset to defend myself - but I will defend John.

No series of arguments or romantic entanglement took John down. No hurt feelings or broken heart killed this wonderful man.

Maybe it is in his defense that I will find my own salvation. Because I know for a fact that no one person killed John, and no one person could have saved him. Including me.

To suggest otherwise is an affront to all who truly knew and loved John. To suggest that I was responsible for his unhappiness or responsible for his death also suggests that John was weak. Blaming me ends up being a profound insult to John.

I may not know how to protect myself from these insults, but I will do everything I can to protect him.


John was not weak. He was not selfish. He died from a disease. Not heartbreak and not a spur of the moment poor choice.

I will repeat these things over and over again, for as long as I have to. I will do everything I can to protect him, and even when I am nearly flattened with guilt and grief, I will speak up.

I will protect him still.






PS:

If you want to blame John's death on something, you can start with the seriously flawed and inadequate mental health care system in this country.

If you want to help - you can start by learning more about mental health stigma and advocate for better support and services for all who suffer from these diseases. And you can insist on better education for everyone about the impact of mental illnesses on all of our lives.


Because John's life meant something. 
It still does.




[This post originally appeared on Ink Splattered Soul , April 25, 2017]