The following poem was a blog post written a few weeks ago by my friend Liz Feltham who is a blogger with ALS up on Vancouver Island in British Columbia.
Black dog has me by the throat. I expend all my energy trying to pry those locked jaws off just a little for some breathing room. Sometimes I am strong enough to gasp a breath, maybe two, but not always. Never for long.
Social anxieties grow deep roots. I open Facebook, see the messages, the posts, the lives. I close it quickly, terrified I have to engage.
I am imprisoned in my house. I have a medical appointment on Monday and am already sick about it. Oh the irony.
Loss followed loss.
The disease has taken advantage of my weakness.
I am as brittle as an old woman’s laugh.
I am as fragile as a teen girl’s heart.
I am as delicate as an infant ‘s bones.
With the slightest hit, I will shatter like vintage crystal against marble floor.
As the black dog‘s jaws squeeze my vision is greyed and blurry.
I need a light, a beacon, before I succumb to the ease of black velvet nothingness.
This struck a chord with me, not because of breathing, but because of the mucus that gets stuck above my vocal chords. Mine is more like a coarse black rock.
Liz was hospitalized with pneumonia right after she wrote that. She said the Black Dog left her when she was in the ambulance on the way to the hospital. I think her Black Dog and my Black Rock are anti-hope. Once you find out the cause of your problem, then you have hope that it will be cured and then your Black Anti-Hope goes away.
I still do not know if I am getting rebound headaches from decongestants which I have discontinued as of last Friday, or if it results from blockage from reflux in my esophagus, or thick mucus, or all of the above.
I get a tightness in my throat that is from a build up of mucus in my throat. It takes a careful regular dosage of guaifenesin and humidifiers and cough assist and suction to keep things draining. So I feel tied to home. And the day has come that I feared back in July 2016 when I first got my suction machine with the long thin catheters to go down my throat. I have to suction deep, past vocal chords. Luckily my gag reflex is much deeper too.
And then my new Facebook friend with ALS, Dagmar Munn, joined ALS TDI’s Precision Medicine Program and posted about it. I said “I have been in it since last fall.” She said “So we are both in the I owe you a yo yo club?”, referring to the phrase we have to read into the phone every month: I owe you a yo yo today, five times. I said “I used to be able to say that well.” She suggested I try https://alsnewstoday.com/2018/02/09/als-learning-how-to-speak-breathe-with-ease/
I tried the first two lessons and already with the breathing and posture things I learned I am swallowing my mucus better. So my black rock may be going away too. (I will post more about the speaking and breathing with ease program in a future blog. For now I recommend it for anyone with ALS to maximize the breathing we have available to us. And for early onset Bulbar or any limb onset with no Bulbar yet it can only help you breathe better and maybe talk longer. And I wish I knew about it when I was first diagnosed, instead of being told to stop speech therapy because it would tire my muscles.)
But then again, my black rock may not be going away just yet. My bipap broke and has not been working properly the last three nights, so I have been sucking dry air all night and waking up uncomfortably dry and with a bad headache. It takes several rounds of guaifenesin and shower without fan and sitting in my small office with the humidifier on, plus the ever present cough assist and suction to get back in balance.
But luckily, Dagmar is a phenomenal writer about living with ALS and she is often published on https://alsnewstoday.com, which I get in an email every weekday. She recently wrote about thinking like an astronaut to deal with the things that come up with ALS: think of Matt Damon in The Martian. Lots of things went wrong but he didn’t sit down and cry – he got to work to deal with the problem. His alternative was death. Our alternative with ALS is a poor quality of life for the days that remain for us. Our challenge is to make the best of whatever we are facing right now.