by Heather Grace, IPJ Staff Writer

Everything I do these days is impacted by what my body permits…

To live with a chronic illness is to live at the whim of your body. You may want to do something with your whole heart and soul, but your body gives you an emphatic “NO!” Like:

  • I may do some minor cleaning, but I won’t be on all-fours scrubbing the tub.
  • I may watch my puppies playing, but I won’t be going on an African safari.
  • I may laugh and joke with friends and “hang out,” but I won’t be pulling an all-niter.
  • While people I know are kick-boxing, spinning, hiking and biking, I am lucky to be standing some days.

Don’t get me wrong–I do realize how fortunate I am to still be among the living. Central Pain Syndrome and Reflex Sympathetic Dystrophy are two very serious diseases. I know that any degree of pain management is a miracle. But sometimes, I’ll admit, it’s hard to see the sunshiny side of the experience.

It’s weird to be in my mid-30s, watching people doing things I can’t–like having a baby–and feel a little sad, heck even a little jealous. Or, reflecting on the little things I did early in life and didn’t appreciate, because I didn’t know it would be the first and only time I ever did them. I never realized how much joy I got from things like ice skating, running full-force, or trying to snowboard and failing, but having fun just trying!

Why do I long for the things I cannot have? Why is it so hard to just get with the program and realize I now have limitations? No matter what my body says, my mind is still the same, beneath the wreckage.

Because I was such a tough “I can do anything” sort of person before the pain, it’s not been an easy adjustment. Listing all the “cants” and “wonts” is really upsetting, even a decade later. Just recently, I began trying to record a short piece of audio, for a slide show for an American Pain Foundation project called, “If I Lived in a World with Less Pain, I Could…” and I began to tear up. It made me really emotional, more than I expected, to look back at who I used to be and consider the things I could do and even could be, without pain.

What really got me was the realization that it’s been so long, I can no longer remember what it is like to live my life, without constant pain. Think about it for a minute… That’s a huge loss, even with all I have been through. And so I ask you this question: If you were in pain every minute, every day, how would you cope? Despite the many changes in my life, and the fluidity of my everyday existence, I know I am doing pretty well, considering.

And, of course, as someone with constant pain, there are certain concessions. I know I am not the same “ME” I once was. We all have to accept our new selves, after serious illness or pain. For each of us, this process is a personal journey that can take a long time. Some of us–like me I suspect–may never fully accept it. Sure I deal with it, day after day, hour after hour, minute after minute, but truly accept it? Not me. Not now. Probably never.

So, if you’re out there in life, sweating the small stuff, letting it get you down, please, for your own good… WAKE UP! Start living your life, now, before all the good days are gone. I know it’s a morbid thought–absolutely–but it’s not any less true!

Especially if you love someone with pain–or someone with a chronic, debilitating illness–consider their experience and do this for them, even if you won’t do it for yourself: Appreciate life more, revel in each new experience… show him/her that you realize all the wonderful gifts you have in life, merely by being “normal.”

If you don’t have a loved one who has an illness such as chronic or Intractable pain, please realize the precious gift you have, in the freedom of your daily life. You will not always be as able-bodied as you are today. Life may not change til you’re in your 80s, or it could change tomorrow. The not knowing is why it is all so precious, special and short.

Nobody who is in their 80s looks back on life, wishing they could’ve complained more or sat around more, in the “good old days.” It’s time to LIVE your life… right now, today! Step away from the screen and do something fun. Have a blast! If not for you, do it for me. Do what I wish was possible… to forget about the pain and live with complete unadulterated joy. My plea: Enjoy every minute! I hope you do.