Since getting a trach tube and starting invasive ventilation nearly a year ago, people suddenly assume I am now on the road to recovery. It is odd how people conclude because I no longer have a mask strapped to my face to breathe using a BiPAP machine but have a tube surgically place in my neck connected to a ventilator that this signifies me feeling better. Actually, needing the use of invasive ventilation is a sign that my health is deteriorating. I no longer have the muscle strength to breathe on my own. I have become reliant on a machine, which is life support, to sustain my daily breathing needs.
When people believe that I am “all better”, I politely smile and thank the person for their remark. As much as I desperately want to give the person a quick lesson about what it means when a person needs to use invasive ventilation, I bite my lip and refrain from saying anything. Who am I to dash their hopes about my health?
It’s hard for most people to understand what it means to be chronically ill. It’s hard to understand what it means to have a progressive disease. When most people get sick, they recover after a few days or a few weeks. Who could ever imagine being constantly sick for over nine years and having a disease which continues to cause more and more complications? For most people, it is unfathomable. For me, it’s my daily life.
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