A Broken Future (or the burden of chronic illness)

Updated: Aug 10, 2020

A couple of titles I came across recently on my news feed prompted me to write about how living with chronic illness is a burden that degrades the quality of your life. The first one was:

"Life after ventilators can be hell for coronavirus survivors". (https://www.bloomberg.com/news/articles/2020-04-24/life-after-ventilators-can-be-hell-for-coronavirus-survivors).

This article discusses the long battle many face after being supported on a ventilator - the article clearly is written in the context of the coronavirus pandemic which struck the planet in 2020. However it brings to light more than that. Among those who are lucky enough to survive their time on the ventilator - and that track record is dismal in itself - there is a much longer, insidious battle that awaits: Recovery. For many it takes a long time and some may never recover fully.

Allow me a moment to recognize that artificial ventiliation is indeed an intervention that can allow a person to cling to life just a bit longer giving the rest of the body a chance to survive. It is however, very, very far from ideal.

The longer you are hooked up to a ventilator, the more you can struggle after it is removed. While ensuring oxygenation of the blood, it also inflicts damage in the lungs - scarring can develop and the architecture of the lungs can permanently change. The tube itself can cause difficulty swallowing and talking after it is removed, and the metabolic damage wastes away at your muscle mass making the person profoundly weak. They may not even have the strength to roll over in bed.. never mind walk nor perform any usual daily activities, driving, grocery shopping - even eating and bathing on their own. It is also known to cause cognitive impairment - to differing degrees - and not all blatantly obvious.

The greatest damage I would argue - is when your ability to think and care for yourself is "good enough" that the disability is not visible. You may be able function on a daily basis but the level of productivity and skilled performance is diminished just enough that you struggle to earn a living and care for your family. You lack recognition. Add in the often-present chronic pain. It is easy for a person in this situation to remain stuck in life - a burden on loved ones for help: financially, physically or both.

Cue: Conflict. Family feud. Loss of your career. And maybe more…. Homelessness?.. Depression ??……. Suicide?…

If the experience in hospital wasn't traumatic for you, facing future life under such circumstances hits hard even on the most resilient mind.

For those of me who know me - this is my story.

But I am lucky. I have knowledge. I have a nearly indestructible mindset. I have patience. I am most certainly not suicidal.

Nonetheless, if I could go back in time and choose not to live in this condition, I would very much think twice. Is all this suffering worth it? Do those moments of peace and joy that I experience justify all the rest? I was never given the choice. Yet, if I could have chosen, it is very possible I would have chosen not to live. I would have chosen that because I had already been though it for years. The struggle was constant. And I just didn't have the desire to fight an even tougher battle than before. So against my wishes my family chose to save me when I was unable to speak for myself. I often felt that I am now here for the pleasure of others, not for my own.

Since it was the case, I still have duties. I cannot quit. And since it was the case, I’m doing what I can to make it better.

But what if the person going through it didn't have my strength? My beliefs, My knowledge?

I came across the following article on yahoo:

"Patient facing life with stoma bag should be allowed to die, judge rules." (https://www.telegraph.co.uk/news/2020/06/04/patient-facing-life-stoma-bag-should-allowed-die-judge-rules/)

This is the story of a young man, age 34 who has been struggling with illness for 10 years, most of his adult life. How can he ever live his life with a stoma bag that he must use to collect his urine and faeces, especially since it isn’t even certain he would recover from the surgery or how long he would live thereafter.

How could you ever choose to live as a permanent cripple, dependent on others, with slim chances of finding a partner to share your life, having a meaningful career, a family of your own?

It is sooooo relatable. Facing such a choice, who would choose to live? For what? Why struggle? Why suffer the pain? There could be an easy way out. If he were choosing it to reduce his "inevitable" suffering, I could understand.

Yet, I still have some problems with this young man's choice.

By reading between the lines I have a strong suspicion that he is missing some fundamental truths: As a human he has inherent value, no matter what the conditions, no matter the circumstances.

The assumption that a person who has a physical handicap is not "capable" or "worthy" of love is simply wrong. He could still find a place in this world although I understand is may be very hard. And I suspect his mind is telling him the false story that he could never, ever improve his condition.

As long as there is a single breath left in your body, there can still be hope.

Be RESILIENT. Power to REAL science. Power to BIOHACKING.

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