The Breathing Paradox

Ain’t nobody slowing down no way
Everybody’s stepping on their accelerator
Don’t matter where you are
Everybody’s gonna need a ventilator
Some kind of ventilator

–Rolling Stones, Ventilator Blues

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To Breathe

From Mindful.org:

How do you cultivate mindfulness? One way is to meditate. A basic method is to focus your attention on your own breathing—a practice simply called “mindful breathing.” After setting aside time to practice mindful breathing, you’ll find it easier to focus attention on your breath in your daily life—an important skill to help you deal with stress, anxiety, and negative emotions, cool yourself down when your temper flares, and sharpen your ability to concentrate.

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Or Not To Breathe

From ALS News Today (my emphasis added in bold):

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative condition characterized by progressive muscle weakness and wasting. Breathing difficulties arise as the chest muscles and diaphragm that control breathing become affected by the disease.

Common symptoms of breathing problems reported in ALS patients are:

• • Increased breathlessness
  • Shortness of breath
  • Shallow breathing at night causing sleep interruptions
  • Breathing discomfort while speaking, sitting, or doing other activities
  • Weak cough
  • Excessive saliva production
  • Difficulty clearing mucus from the lungs and throat causing buildup and recurrent infections
  • Respiratory failure

(Author’s Note: I currently experience the first five symptoms on this list.)

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To Breathe

I’ve dabbled in meditation off and on for many years, and despite having tried more advanced practices, the vast majority of my experience has been with the most basic: a technique common across many schools of meditation, both secular and non.

• Focus on the breath
• Start counting breaths
• Whenever you are lost in thought, gently, non-judgmentally acknowledge it happened, and return your attention to the breath
• Rinse, repeat ad infinitum

For me, it is often difficult to reach a count of 10 or more breaths before my monkey mind is off somewhere not in the room, focusing on something other than the breath and the present moment.

And so, as if the simple act of paying attention to one’s breathing wasn’t ironically difficult enough for me, along came ALS.

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Or Not To Breathe

Medical science says that the muscles involved in breathing are controlled by both the involuntary (autonomic) AND voluntary (somatic) nervous systems.

Translation: We breathe automatically, without having to consciously send signals to the muscles, but we can also slow breathing down or speed it up on demand as needed.

More Translation: Of all of the muscles affected by ALS, those involved in breathing are the only ones associated with the autonomic nervous system, AND, because these muscles are both voluntary and involuntary, they serve as a kind of backdoor for the most common ALS coup de grâce: respiratory failure

Staving Off The Inevitable: Without a cure available, the best medical science can offer me is a ventilator to help with the symptoms until full respiratory failure occurs. The time a patient has left at this point can vary widely from person to person. I’ve been issued a noninvasive AVAPS machine, similar to the CPAP device that folks with apnea use to sleep without snoring. It’s awkward and intrusive (noise and tubes and masks), and it can take a month or more to get used to.

I’m almost there.

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That Is The Question

So yeah, kinda difficult to practice mindful breathing meditation, or really any meditation method at all, under normal circumstances, much less with respiratory function slowly failing and tethered via breathing tubes to a machine for a portion of each day.

Nevertheless, for now, I’ve answered the question of whether or not to breathe with a firm, stubborn YES.