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What It Means to Live Life With an Illness That Does Not Have a Cure

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“Anyone can carry his burden, however heavy, until nightfall. Anyone can do his work, however hard, for one day. Anyone can live sweetly, patiently, lovingly, purely, until the sun goes down. And this is all that life really means.” Robert Louis Stevenson

Life with chronic, debilitating illness is not all clean sheets, fruit baskets, your favorite foods, and warm visits as you convalesce like it is with acute illness.

Sometimes it’s a cold, harsh reality — like the aftermath of loss, when all the help, support and visits have trickled down. It’s a sudden, life-changing reality from which there is no escape. It’s waking in the morning to that moment when whatever peace sleep may have brought you is chased away by a “broken” body that poignantly reminds you this is not just a bad dream.

Most days require pulling yourself up by the bootstraps as best you can to do what must or can be done. Many are white-knuckled through with no further goal than just getting through the day. You try to function and carry on and participate in life and live by your standards and values, but there is always an underlying sense of failure and having to let go.

It’s only a matter of time until the demands of your body supersede everything else. You stave off a crash as long as you can. You “manage” your energy and strength as best you can. Still, sometimes days of wretched, falling into yourself, survival mode illness befalls you. Light and hope can become dim. You hold on and begin to inch back toward life, carefully and cautiously trying not to “overdo” it.

You try to be happy with less and want, need, hope and aspire to less.

You try to live measured and predictably.

With chronic illness, some days can feel tedious and uninspired – as endless nothingness and mind-numbing boredom stretch before you. It can feel like you are a prisoner of your own body. It strains the spirit and taxes the soul.

Living with purpose and trying to make something out of what you’ve got to work with calls for conscious, dogged determination not to be defeated and stay down when you’re knocked down.

It presses me to dig deeper, try harder, be more courageous and think more intentionally than I ever thought possible or had the desire to.

Every day feels like more of the same (often less). Rinse and repeat. And when the morning light comes streaming in, we’ll get up and do it again. Amen.

All things said and done, in the end, no matter how you analyze or describe it, and no matter how much help and support you have, some days, nothing seems to help – especially when there’s no cure. You feel beyond help. You must save yourself. Those who support, help, and take care of you certainly help to ease the burden. I would not still be living without them. They are not taken for granted.

Still, this is my reality. I must find my way through it. No one else can do it for me, nor can those who don’t fight my battle depreciate the value of just hanging on one more day when that’s all I can do. With illness, there is no clear path. The only thing I know, is that it is not going away.

I try to live with a spirit of acceptance, endurance, faith and hope.

Nothing is set in stone. Today, this week, or even this month might be bad.

But, tomorrow may be different.

Even during trying times, I try to find some joy, some comfort, and count my blessings. I don’t succeed every day. But, sooner or later, it turns around.

Originally published: October 2, 2019
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