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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Tuesday, September 9, 2014

If you got a terminal disease what would you do?

Originally posted 9-23-08.

We’re *all* terminal in the end.  I’m a ‘slow’ terminal.  I’ve already lost a niece who was born terminal but lived to 20, in spite of all medical odds.  So define terminal here.  I was diagnosed 20 years ago, I’m lucky I’m still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body.

So someone is asking, what would I do if I found out I’m terminal.  Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn’t go into organ failure first, what would YOU do?  I went to college and got my degree.  I went on to grad school.  I raised a child as a single parent and then remarried and helped raise another child.  Every day I prayed that I would live long enough to see my children grown up.  Every day I did laundry, made meals, and somehow made it through my day.  Recently, just this last winter, I faced that I might die from liver involvement.  But here I am, I’m still doing laundry and making meals.  Slowly, with lots of rest.

What did I do?  I faced it and kept LIVING.  I didn’t ask ‘why me?’, because statistically, why not me?  Everybody’s got something, right?  I didn’t blame God, I didn’t hate my body, I didn’t go on big campaigns to fundraise for a cure for my disease.

What did Stephen Hawking do?  He helped flip the world of physics upside down.  And dang, he’s still alive, too.  Some of us just won’t die.

Being diagnosed with a terminal disease isn’t a license to feel sorry for yourself.  It’s not a ‘get out of responsibility’ card that says you are now free to smoke and drink and do whatever you want to your poor body.  It’s not a sign over your head that says you get to go to the front of the line for a free meal.  In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don’t know how to deal with it, and that you won’t be able to keep up with the fun stuff any more.  So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you.

If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it.  Have a good cry, have another good cry, and keep moving ahead.  Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you.  Communicate with your medical team, talk to a counselor, and don’t be afraid to ask friends and family for favors, and tell them thank you.

Oddly, for those on the brink and about to step over (I’ve seen this a few times), some feel the need to reassure the ones they leave behind it’s ok, even though inside they are scared out of their wits.  They can walk up to the bridge with you, but you step out alone.  I think that’s what we fear most, unless we’re so sick that we’re glad it’s finally over.

Live your lives.  ‘Terminal’ doesn’t mean you’re done yet.

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