WHEN…

When you have an incurable illness, you spend a lot of time going over the why’s.

But it’s the when’s that transform you into a person with a life you barely recognize.

  • When staying alive becomes your full time job.
  • When your body betrays you in ways you never imagined.
  • When your brain says, “not today”.
  • When every day you lose a little bit more of life as you know it.
  • When you don’t even recognize the face staring back at you in the mirror.
  • When no matter how hard you try to stay positive, life bitch slaps you into reality.
  • When you beg for sleep that never comes.
  • When you lie alone in the dark in pain & despair, listening to yourself breathe & praying for daylight.
  • When you are cognizant of every breath you take because it takes conscious effort.
  • When pain makes you acutely aware of every cell that makes up your body.
  • When a cramp is not just a cramp and you watch in agony as your muscles spasm uncontrollably.
  • When every day body functions require intervention.
  • When you have ports, pumps, catheters, and a number of other devices that help your body do what it’s supposed to do.
  • When your medical supplies take up more space than anything else you own.
  • When your medication doesn’t fit in one, two or even three pill cases.
  • When they finally give you a medicine that works and your insurance says, “nope”.
  • When your dignity is obsolete.
  • When a good day means you didn’t piss yourself.
  • When you reach the point that you have nothing to lose, so fuck it, you do & say exactly what you want with zero fucks given.
  • When you can stand in a crowd of people & feel completely alone.
  • When it takes longer to plan & pack for a trip then the actual trip will take.
  • When you’re at the mercy of strangers, simply because they have, MD after their name.
  • When you get trapped in the grocery aisle, with your wheelchair, because this world is not created equal for the disabled.
  • When you’re jealous when others get a serious illness & beat it, because there’s no beating your illness.
  • When someone needs you & you can’t help, because your body’s being a bitch.
  • When somedays you’re exhausted just hiding the fact that you’re sick.
  • When every fiber of you’re being is screaming for help, but you remain silent.
  • When you sit and listen as life goes on without you.
  • When your faith in God is tested, to the breaking point, every minute of every day.

When you have an incurable illness, that leaves you disabled, every day is a fight for your life. I don’t just mean a fight to stay physically alive. I mean a fight to “live” & not merely exist.
What is your “when”? Leave a comment and let us know!

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