A universe of possibilities occurs in this last breath - SLA...

A universe of possibilities occurs in this last breath – SLA…

Have you ever thought about what a single breath means to you? What can you do with just one breath? What can you say with a breath? What or who can you see during a breath? We who suffer from respiratory problems think long and hard about these questions.

Three times a few months ago, I had to gasp once more – once in April and two consecutive episodes in June. My body, mind, and spirit said, “Oh-oh, I think that’s it.” I couldn’t catch my breath and lost consciousness. All I wanted during those three incidents was to breathe again.

I wanted one more breath to say goodbye to my wife, and one more breath to say goodbye to my daughter. Just one more breath became my irresistible desire. Although they both knew that I had been prepared spiritually much longer than I had been sick, what they didn’t know was that I wasn’t ready. There is a big difference between these two states of mind.

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I remember a line in the movie “Gladiator”, when the character of Djimon Hounsou talks to another deceased gladiator, saying he will see him later, but “not yet”. He was prepared but not ready.

Struggling for one more breath reminds me of reaching the top of a mountain on a bicycle. I wanted one more breath and one more speed to complete the climb. I was ready to do the climb, but apparently not prepared enough.

My first near-death incident was caused by a power failure, which prevented my ventilator from working. We have since gotten a machine with a battery backup. The other two incidents were due to my respirator not being attached to me quickly enough – once due to a malfunction and the other time due to a delay in getting a respiratory therapist to attend. .

These heartbreaking experiences affected me psychologically, creating an anxiety that I have been trying to shake off ever since. I turned to an emotional expert and a hypnotist for help, with minimal success. But it is still very difficult to keep my breathing mask on unless my wife or my companion is nearby. Should we talk about post-traumatic respiratory disorder?

With my partial pressure of carbon dioxide reaching 99mmHg (a normal level is between 40 and 45mmHg), I was told that I should be brain dead or not have survived at all. But God clearly wanted me to be there for another mission.

Important observations and lessons

Beyond all the trauma and drama, I learned two lessons. One concerns the different ways in which hospital staff treat their patients. Some go the extra mile for their patients. Others seem nonchalant about meeting a patient’s needs. I believe those in the latter group don’t really listen to their patients or take us as seriously as our condition demands.

Also, some credentialed people in this group don’t want to recognize that a patient can know more about their own body than the professionals. You would think that being able to voice your needs would be more helpful to people who are unfamiliar with your care. But that only matters if they are willing to listen and respond accordingly. It saddens me even more to know that some ALS patients are not able to express their wants and needs.

To people who choose not to listen to their patients, I say people don’t care what you know until you show them how much you care. Lasting impressions are everything. As writer and poet Maya Angelou observed, “I learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” That’s how you show you care.

The other lesson that has been powerfully reinforced in me is the importance of small things in our lives. Imagine all that we can do with just one breath: a hug, a look, a touch or say “I love you”, “forgive me”, “thank you”, “have mercy” or “I’m sorry”. All of these things and more are often taken for granted and can be accomplished with just one more breath.

Note: ALS News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The views expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to stimulate discussion of issues relating to ALS.

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