The thing I remember most about being told “We have to intubate you now” was a feeling of relief. By the time it got to that point, it was clear I wasn’t going to be able to breathe on my own. Intubation is an aggressive, last-ditch effort to save someone’s life. And I wanted to live.
I didn’t have COVID-19 — and for weeks leading up to that moment, I didn’t know what I had. My sharp, piercing headaches—like someone shooting a dart gun at the back of my head once every 15 minutes—were explained as a “pinched nerve” by multiple doctors in multiple ER visits. By the time I walked into the ER the final time, I couldn’t lift my arm and I couldn’t swallow. It still felt like the doctor was playing “twenty questions” with me, as I sat there in my gown on the exam table. “Could it be tetanus?” I asked. “No, tetanus would make your arm rigid, not limp. But that was a good guess! Keep guessing!”
Multiple doctors, including, finally, a neurologist examined me, and they decided to do a spinal tap. By then my voice had started changing–becoming really high-pitched. They put a long examining tube around my head and up my nose then solemnly explained: “your vocal cords have become paralyzed.”
It was shortly after that when I heard the words “we have to intubate you.”
I knew it was coming, and I think now is the time to let people know: I was not afraid.
Even when I woke up from the medically induced coma with the breathing tube down my throat and unable to move my entire body other than wiggle my toes and fingers — I wasn’t scared. OK, maybe that very first night I had to go to sleep on my own when the nurse taped the call button to my hand because I could move enough to grab it. And I just focused on keeping my thumb above the call button so I could press it if needed. I was probably a little scared that night.
But not as much as you might think.
I remembered hearing about the most important thing about being on a ventilator is don’t fight it. The machine is breathing for you so you don’t have to breathe. So don’t even TRY to breathe.
And that is what I did. I am not a zen type of person, but all my zen energy went into not breathing and letting the machine do the work for me.
After about a week of being on the ventilator, they asked me if I wanted a tracheotomy. Not an emergency tracheotomy, mind you, but a voluntary tracheotomy. So that the air would go in through a hole in my neck instead of through the tube in my mouth. I still wouldn’t be able to talk — but people might be able to read my lips. It would be more comfortable, the nurses explained. So I agreed to the tracheotomy — in my mind I’m sure I was thinking “I can’t move, eat, or breathe. At least a tracheotomy will be something new to do.”
It took 3 weeks before I was weaned off the ventilator, and another 2 to learn how to swallow, sit up, then stand, then walk. The only time I cried was the day before I was due to go home, when my physical therapist had me take a shower on my own, to see if I could do it. And I couldn’t. My right arm was still paralyzed, five weeks later, and I couldn’t wash my hair or get dressed alone. And I cried. A few sobs. But eventually, I went home and things went mostly back to normal.
I even, to this day, feel unduly proud of my star-shaped tracheotomy scar on my neck.
I want to be clear that it is OK to be afraid.
My experience is probably different than others. I have panic attacks during this pandemic, and I haven’t even been sick.
But the reason I am telling you this story, now, is because when you think “Oh he/she must have been so afraid” — I can tell you, maybe, maybe not.
And maybe, what they will be feeling is how much you love them.
What I did was just try to focus on things I knew to be true:
— Let the ventilator breathe for you.
— Find ways to tell those you love that you love them — even if you can’t talk.
— Be kind to doctors, nurses, other patients.
— I appreciate the smallest of progress.
— Know you are loved.
— Smile with your eyes, if your eyes are all you have to smile with.
Despite the ventilator experience being OK for me — I still wouldn’t wish it on anyone else. So please, please please pay attention. We know what COVID-19 is. We know how it spreads. Do the following:
— Adhere to social distancing guidelines. Stay at least six feet apart.
— Wash your hands with warm soapy water for at least 30 seconds. As often as you can — but especially after touching anything that might transmit the virus.
— Stay home.
— If you do go out, wear a mask. Especially if you are going into a store.
— Guidelines change. Stay up to date. When in doubt — just be extra cautious.
— Protect yourself AND others.
Let’s get through this together.