The 6 Words That Saved My Life in the ICU

When you live with a rare disease, small procedures can change into life-threatening calamities. Sadly in May, a routine surgery (well, as routine as a surgery can be during the COVID pandemic) to remove a large benign tumor in my thigh ended up deeply upsetting my undifferentiated connective tissue disease, leaving me waking up gasping for air in recovery because my body puffed up like a balloon.

The worst of the swelling was my airways. They were swollen to the point of almost being shut, which started the dramatic saga of having to get re-intubated and waking up in the ICU on a ventilator.

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Remember this was all during the beginnings of the COVID pandemic, so I didn’t have a single family member or even an advocate who deeply knew my complex case by my side. It was just me, my team of doctors and for half a day, a notepad (as my only means of communication while I was intubated).

I was in the ICU for about seven days and remember on a particularly emotionally hard day, I was talking with my religious studies teacher on the phone. He said six words I’ve never heard before.

“I’m so happy you’re still here.”

Tears filled my eyes. And not due to pain, frustration, sadness or fear like they had many times in that ICU room. But for an entirely different reason that I can only describe as gratitude. Those six words seemed to validate that even though I was exhausted in every sense of the word, lying in a bed, barely able to move, lying to my family and telling them I was fine when I wasn’t, and lonelier than I have ever been, I was exhausted because I was in the midst of a huge fight. And someone cared if I won.

I didn’t know how desperately I needed that verbal reminder. That someone on the “outside” cared. That this fight mattered. And those six words would continue to carry me from nine days in the hospital, to recovery and for weeks after I came home from that hospital stay. Everything, literally everything, that could go wrong with my recovery did go wrong. And I found myself exhausted. More physically and emotionally drained than I have ever been. Wondering if this fight had a purpose. And honestly I got to a dark enough spot where I wondered if those I loved would be “better off without me.”

In the midst of that recovery, still healing and learning how to walk without a potato sized tumor in my thigh with the help of my “gorgeous” red walker, I maneuvered my way to the infusion center to get my monthly IVIG. As I sat in the infusion chair getting the typical round of  health questions necessary before they pump you with an invasive treatment, I told the recent saga of my screwed up health to the tens of nurses who surrounded me.

One of my favorite nurses, with shock and compassion brimming in her eyes, smiled at me and said, “I’m so happy you’re still here,” in a voice that let me knew she meant every word she said. And once again tears of gratitude filled my eyes. I never truly realized the importance of telling someone who is fighting for their life that you appreciate their existence. Believe it or not, after that infusion, I was sent to the ER because my medical team was scared I threw a blood clot in my knee. I was convinced that during that recovery, my body seemed to only follow “Murphy’s law” (what can go wrong will go wrong).

When once again I was on a hospital bed… by myself (no visitors allowed), feeling like an absolute burden, trying to not drown in all the emotions being in a hospital after my ICU stay brought back, I held on to those six words.

“I’m so happy you’re still here.”

I held on to them like they were the only life preserver and I was stuck in a tsunami. I held on to them as I started counseling to deal with the PTSD from that hospital stay, and finally made my mental health through battling life-threatening illness a priority

I held on to them when two months later, my pulmonologist said I needed daily supplemental oxygen and stared at my face in shock the first time I wore my nasal cannula in my home.

I still hold on to those six words today.

Because when you are dealing with chronic and or life-threatening illness, fighting for your life never gets easier. A part of you will feel like a burden with each admission, the co-pay of each appointment, test and medication. In every aspect your health declines, you will take time to mourn what you have lost and it will hurt those you love, and those you love will hurt to see you hurting. You will miss what you used to be able to do, what you used to dream about and who you used to be. On your worst days, you will wonder of death would be easier than all the pain you are feeling right now. (p.s. Life is worth every ounce of the pain.) And no amount of “positive thinking” will change those truths.

Maybe even you, like me, will at times wonder if you are a burden to those you love. When those you love are just searching for a way for you to see yourself in their eyes. But those six words, “I’m so happy you are still here,” not only saved my life, but changed my life.

I tell it to my friends who are struggling with mental or physical health.

I tell it to myself.

I use it as an acknowledgment that the fight is long and hard, but you have people cheering you on even when you don’t realize it. We all need the reminder that someone is happy that we continued and will continue to fight despite it all

So to whoever is reading this, I’m so happy you’re still here.