My Loss isn’t just another Loss

The last time I ever held my Mom’s hand in NY Presbyterian Hospital. Hours before she took her last breaths.

When I was very little my Mom once said to me “You know you don’t have to cry every time you feel pain, Jillian”. I stopped myself from feeling as much as I could from that day forward. Nearly 29 years later, I realize that my Mom was wrong —perhaps this was the one thing she was ever wrong about. I do have to cry every time I feel pain. I feel so much pain. I have so much pain and trauma from losing her. If I don’t cry, if I don’t feel, then I’ll explode.

My Mom didn’t die on impact. She wasn’t hit by a bus, she didn’t get shot, she didn’t crash her car. My Mom didn’t die peacefully in her bed at home surrounded by family. She didn’t live gracefully alongside illness. My Mom didn’t just go. She went slowly and painfully. My Mom suffered for a year. And the last month and a week of her life, she suffered to a degree I can’t ever truly articulate. 

Someone once told me “You could have had it so much worse. Imagine losing your child or your entire family. It could have been worse” as though I should be grateful for what I went through.

My loss wasn’t just another loss. My loss has a hold over me like the devil has a hold over his victim. My loss was an intense trauma, a trauma I wouldn’t wish upon anyone — the trauma of having watched my Mom suffer and die at the hands of our medical system. The one place that was supposed to save her. 

Just because someone is in a hospital does not mean anything. The “care” my Mom received was torture beginning with the doctors who scared her into getting a bone marrow transplant that would subsequently give her another illness and kill her. The breathing tube that they put down her throat. Watching them take it out to clean it. Watching her dazed and confused, high on morphine. Unable to speak. Being fed and quenched through IVs. Unable to move when she wanted so badly to. The nurses forgetting to rotate her to avoid bed sores. The constant reminders I had to give them. The amount of research I had done. The lack in understanding of how the ingredients in the IVs they were giving her caused cancer too. Mom being unconscious and sedated the entire time. Without voice. Without reason. Without expression.

When we came to visit I could feel her arms and legs reaching to escape from the tape they put around them. I could see that she was desperate to be taken off the sedative, desperate to talk to us. Desperate to see us. Desperate to get out of there. We didn’t understand what was happening. We trusted them. We didn’t know.

When my Mom’s kidneys failed and the toxins spread to her brain and her doctors decided to emergency sedate and intubate her because she wasn’t making any sense, she yelled out “I’m going to die. I had a dream. I was fourth in line to heaven. I’m going to die here.” And she was right. She did die. She might have even been fourth in line.

After Mom died and we got her phone from the hospital, I found a video — the last and only video she had left. It was her desperately trying to record the doctors right before they sedated and intubated her. She was yelling ‘help’ as the front view camera faced her, her hands scrambling around to record in desperation while the doctor grabs her phone and ends the video. That’s the last recording I have of my Mom and her voice. I don’t know what really happened. I don’t know what they did or said or what my Mom knew. I’ll never know what she was trying to tell us.

In the book The Body Keeps Score, the psychiatrist explains how a traumatic loss can leave you with the same exact PTSD as a war veteran. Bessel van der Kolk says “Though we once considered trauma to be exclusive to veterans and people growing up in extreme circumstances, we now know it is widespread. And not only is it all over our society, it’s all over our bodies.” I know this. I feel this. Losing my Mom was fighting in a war. It was a battle of uncertainty, watching her suffer and feeling helpless. My Mom was fighting in the trenches and I was watching her the entire time. I did not get updates via TV or phone, I had real-time exposure to all of it all of the time.

When I say my loss wasn’t just another loss — it wasn’t. It was beyond trauma, beyond anything I can even explain. My loss was torture. It was suffering. It was heart wrenching watching my best friend die in this way. It was suffering to see that she didn’t want it to happen at all. To see how much she fought it. She just wanted to go home.

I used to grab her soft hand that I had hardly recognized as it now was blue and crusted from poor circulation. I remember googling this after our visits and reading that these were symptoms that someone was dying. I’d rub her forehead when I’d visit, whisper in her ear that we’d bring her home. I’d tell her that she’d wear that new bathing suit I got her at the beach someday soon. That we’d take that vacation. I didn’t know if it was true, it all felt so far from the truth but I had to give her hope. We had to hold onto hope in some way.

After Mom passed, I remembered her hamsa bracelet was taped to the whiteboard in her hospital room, and in full panic, I called the hospital to ask if they had it. “Your Mom has expired?” the nurse on the other line asked me in hospital terms. “My Mom has not expired” I screamed, “My Mom was a human being, not a piece of meat. She did not expire. My Mom died at the hands of your hospital”. He apologized. The hospital never located her hamsa bracelet and I never retrieved it. The nurse probably still doesn’t know that those words will stick with me for the rest of my life.

“The hospital killed her” my Dad would say to me over and over again when I returned home from college. “I think we should do an autopsy on her, Jillian”. Things that I never thought I’d be offering my Dad advice on. “I think we should,” I told him. A 21-year-old who was in shock, numb, and had just experienced the most traumatic loss of her life was now agreeing with her Dad to have the same hospital her Mother died in also perform an autopsy on her. Logic wasn’t real at that time. We didn’t know what we were doing. We were all still living in survival mode — the subsequent effects of so much shock. It still didn't all feel real yet. I didn’t know this but it wouldn’t fully hit me for another two years that my Mom was gone. My Dad talked about getting medical lawyers, calling one every week. When he received the autopsy results, he refused to show them to me. “It’s too much, Jillian. I can’t let you read this.” We didn’t sue the hospital — the lawyers told us we didn’t have a case.

Some nights when I’m up really late, I remember this time in my life, I remember those hospital visits. The images are still so vivid. The fear is still so tangible. And then I spiral. My entire body shuts down and I sob. I cry tears for all of the pain that my Mom went through in that last month of her life. I cry and I cry and I wish I could have helped her. I wish I knew. I wish I could have stopped it. I wish I could have saved her. I can’t describe this pain. I really, really can’t. But what I can say is that it is the type of pain that makes you not want to be on this Earth anymore. It is the type of pain that makes you feel like you can’t go on anymore. Like something has swallowed you whole and you can never get out. I put myself in my Moms’s shoes in that last month and I wish that I could have taken her place, taken all of the pain away. I feel every fear, anxiety, and paranoia that she must’ve felt in that hospital bed covered in bed sores, IVs, surrounded by people in hazmat suits. I feel it all. I feel all of her suffering. And I want to die instead.

I lay in my bed and I cry for hours. Screaming to my Mom to speak to me. Apologizing to her for how much she suffered. Telling her how badly I wish I could have saved her. 

My loss isn’t just another loss.

My loss has destroyed me. Changed me. Hurt me. Pained me. My loss has left me with anxiety, depression, suicidal thoughts, fear, regret, deep regret, and pain. My loss has made it hard for me to trust, to see clearly, to laugh. To play. It has made it hard for me to love. To stay. It has made it hard for me to be still and be in relationships. It has made me distrust the world, the medical system, and the government.

My loss isn’t just another loss.