I spent most of the summer on my couch working very, very hard to breathe.
Everything else stopped. My job, friendships, marriage, being a mom who could participate in anything, was gone. All I did was breathe and go to doctors’ appointments where no one could figure out what the hell was wrong with me.
At first we thought pneumonia, then we thought asthma, mono, then there was a whole host of very scary tests for very scary conditions. My bathroom counter started filling up with the trappings of a sick person: medications, bottles, tinctures, inhalers, tools to measure O2, heart rates, blood pressure. Then my bedside table was full too. Then the kitchen counter.
I wondered if I was exhausted. I wondered if I was burnt out. I wondered deep in the middle of the scary, gasping-for-air nights, if I was dying.
I made deals, the kind you make when you think you are dying. The “If I get through this I will stop swearing, work less, be a better mom, pray, go to yoga, do whatever it takes” kinds of deals. Every time, I made it through. Turns out, I have a lot of deals to hold up. Starting with the better mom one.
Finally a friend called in a favor and got me into a pulmonologist who ordered more tests that were awful, but showed an obstruction in my airway. I then went to an ENT who sent a long black camera on a tube through my nose and down my trachea. He said “I see the problem.”
Honestly my first thought was “Fishbone! It’s a fishbone. He is going to take it out and I will breathe.” Well, there was no fishbone. It was not going to be that easy. Or funny.
I have what is called Subglottic Stenosis. It is a fairly rare disorder of the trachea where it closes up with scar tissue. The majority of people who have this are women, or premature infants who had been intubated. Some people have a condition that just creates the scar tissue, some are from injuries. Mine was most likely caused by an intubation injury twelve years ago.
I felt scared. Pissed. Alone. Crowded. Overwhelmed. And the worst moments were when I could feel absolutely nothing at all.
There are not that many options for fixing this and frankly none of them are appealing. But what I found remarkable was an online group of others who have this condition, all over the world. It is rare, but we have found each other. And as always, community helps.
The left over fear of hospitals threatened to topple me, and the support I received from my community shimmered like stars on a dark night. Their little lights turned it into something beautiful. I dug deep with lots of help and found just enough peace to take with me into surgery. For everyone who walked with me, I want to say…I know…that’s all. I just know. And thank you.
I had a dilation of my trachea this fall. I barely crawled in, worked over by prednisone and all the other meds. But I am on the other side now. I get better every day. We don’t know how long the dilation will last, or if it is permanent. But for the time being, my counters are clear of medications and I take that as a good enough sign.
What did I learn in my many hours of no-avoiding-this-bad-deal? I learned that our ability to justify bad health (or time, or choices) is a remarkable detriment. I learned that as a mom, my heart breaks to imagine one of my kids dying, but it is also sheer, cold terror to imagine everything I would miss in my children’s lives if I died. Freezing, biting, cold fear.
Breathing is damn near the most beautiful thing that happens to us, and it happens all the time.
Take note. Take big gulping breaths. Take a few now, for me and for you.
*Editor's note: There is a movement to check cuff pressure with every intubation with the changes in sizes from 7 to 6. We are not doctors but do think this is worth discussing with your health care professionals.