What is a Terminal Illness?

There are some misconceptions, I think, about what a terminal illness is. A lot of people assume that cancer is a terminal illness, and while it sometimes can be, not all cancers are terminal. Then there are illnesses that are terminal that most people don’t ever think about being terminal.

Simply put, a terminal illness is nothing more than a condition or disease that, even with treatment, is expected to result in death.

Now, in the strictest sense of things, that makes life a terminal condition. After all, life is absolutely expected to result in death. We all die. It happens to the best and worst of us, every day.

But people living with a terminal illness are more likely to die younger than expected, sooner than planned.

We all plan to die at some point, in that, we often draw up wills, talk about what we want to happen with our bodies, with our personal things, left for our families, what our spiritual beliefs are, thoughts of the afterlife, etc. When you live with a terminal illness, it’s almost as though you are forced to think about these things more.

A terminal illness doesn’t mean you are going to die tomorrow. It doesn’t even mean you have an expiration date. I’ve seen people who have types of terminal diseases who were told they were going to die within a year and who have gone on to live 20 plus years and I’ve watched people who had ‘curable’ diseases who were reassured they would live a long time but who died within months of diagnosis. We don’t know. We never know.

But someone with a diagnosed terminal illness is more likely to know how and closer to when they will die than most people do. Strangely, this can be a blessing and a curse. Sure, it’s tough to think about the fact you don’t necessarily have the whole rest of your expected life in front of you, but I have two friends who have friends who dropped dead overnight this past year, with absolutely nothing ‘wrong’ with them, no warning, no expectations, no planning, nothing. And yet, I’m sitting here with a terminal illness that should have killed me a few times and I’m still alive.

Sometimes, it seems so random… other times, it seems there are reasons for everything that we may just not recognize.

The point is, we don’t know. We never can know for sure. So until the day comes that we take our last breath, beat our last heartbeat, flutter our last eyelid, all we can do is make the most of whatever time and life and energy we have left.

Plus, I don’t know what I believe as to how it manifests, but THIS is simply not all there is in the universe. Time will tell.

That said, my condition, CTEPH, with treatment, but without the life-saving surgery, is a condition that is expected to result in my death, with an average life expectancy after diagnosis of anywhere from three to 12 years, with an average in one study of a little under four years and a little over six years in another study (though it was in Japan–and someone told me moving to Japan won’t really increase my lifespan–darn it all!). Those are scary numbers. But then again, over 98% of the people who have the type of massive multiple bilateral pulmonary embolisms and heart damage that I had from those embolisms suffer from a condition called ‘sudden death’, and I’m still alive. And I had these happen to me, TWICE.

So I beat odds. In my entire life, I’ve always beaten the odds. I expect this time and these conditions to be no different.

That said, learning to live with a disease that is expected to result in your death absolutely does change your perspective. But as my blog title says, I’m not alive and dying. I’m dying to live!


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