Recently a few things have made me think about this thing, this life I precariously lead on the brink of medical calamity. I just read an article about a mom with Cystic Fibrous. The title of the piece was What It's Like to Be a Mom When You Have an Incurable Disease. I don't have an incurable disease but I do have an incurable condition and it can be life threatening at worst and life disrupting at best.
I have lived with it all my life so typically I don't think too much about it-- dealing with my medical difficulties and waiting for a twitch that may or may not send me to the emergency room is something I am used to. And I really don't think about it as a problem, until a flare up. Then I can feel mightily depressed because nothing I do can make this better; make it go away. And it is also something that people cannot easily understand. I do not have a disease; I have a birth defect – it was fixed to the degree that I could survive but not to the degree that it would not seriously impact my life.
I have rarely given in to the idea that this precarious medical situation should affect how I live my life. In only one occasion that I can think of did it alter my path; when I thought of joining the Canadian military and realized with my food restrictions and inevitable hospitalizations-- I would not be a desirable recruit.
In lieu of a life of excitement in the Canadian Forces I opted for life elsewhere and moved to SouthEast Asia where I knew no one and nothing about the health care system. I was fortunate and lucked into a great North American trained abdominal surgeon at a little known hospital in my third year overseas. But that was after several bad experiences at hospitals where I was made to go through rigorous and unnecessary test to diagnose what I knew was wrong but which they had never before seen. Rarely do I ever find a doc who looks at my scar and can identify its origin as the birth defect known as an omphalocele.
Generally I just keep on keeping on and don't think too much about the implications of having a chronic, occasionally life threatening, condition. But as I said a few things recently gave me pause. One was the article that I just read and the second was the question almost voiced by a recent acquaintance of mine. When I was describing my medical situation to him he started to ask if I was not worried about my children and if...and then the question fell off. But I knew what he was going to say. Wasn't I worried that this thing might kill me before my kids grew up?
In truth, I never thought about it. Firstly, because I never thought I would be able to sustain a pregnancy let alone have two kids. Secondly, life has taught me that it is impermanent no matter your current state of health. If everyone worried about dying and leaving their kids behind-- no one would ever have children.
I have taken reasonable measures; wrote a will. Informed cited guardians of their inclusion in that will. Talked to my kids about what I wanted done with my body when I die; a discussion I had with them recently when an opportune moment arose and I was not in the least bit sick. Life insurance is a reasonable step; but they won't insure me for my condition so it seems like a futile measure.
Death is the end of everyones story; I have never assumed that mine would be written by my medical condition. I live with it, it is not my life.
Once in my early university years I had to write my own obituary for a class project. In it I gave cause of death as a fall from a mountain side while out scouting for archaeological sites in the Andes. It never even occurred to me that anything other than adventure would end my days. It still doesn't.
Occasionally I do worry about my health and how my time in hospital affects my kids. Mainly I just hope they don't get too scared when I am sick. I tell them when they are upset about a recent stay in hospital -- I always come home.
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