invisible illness week: JUST ONE life…

Every year I try to write a post for Invisible Illness Week and – guess what week it is??!  To learn more about Invisible Illness Week, visit this website and be sure to check out some of the other blog posts listed from some amazing invisible illness sufferers.

I am JUST ONE.

In past years I completed the “30 Things About My Illness” Questionnaire for Invisible Illness week, but this year I’ve decided to write about the theme for this year – JUST ONE.

If you found this blog through the Invisible Illness Week website, thank you for visiting. Please feel free to leave the link to your blog in the comments so we can learn more about you!

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JUST ONE Life.

Recently I was reading a chapter in the book, hand wash cold by Karen Maezen Miller.  In that chapter, Miller states:

“You might think, for instance, that the life you have is not at all the life you had in mind and so it doesn’t constitute your real life at all. Your real life is the life you pine for, the life you’re planning or the life you’ve already lost…”

 

After reading that, I started thinking about my “real” life – the one I sometimes feel I’ve lost to dysautonomia.

In my “real” life I’m a respected in-house counsel for a successful yet socially responsible multi-million dollar corporation. On weekends, I volunteer one day walking dogs at a local pet shelter, and the other day at a senior community center helping the less technology-savvy seniors learn to use a computer for daily tasks. We often have talks after computer class about generational differences, and they impart their wisdom and tell stories of their youth over spoonfuls of cafeteria jello.  My 2 kids and 3 dogs come with occasionally, because they know more about how to use a computer than I do and they like playing with the dogs at the shelter.

My devastatingly handsome husband (at least this part is true) and I organize the occasional block party where neighborhood kids ride their bikes up and down our cul-de-sac while the adults grill burgers in the street and drink cheap beer out of plastic cups.  My husband and I (mom and dad, close your eyes) have amazing sex multiple times per day, because of course in my “real” life I have the energy to.

I let the disabled and the elderly cut in front of me in supermarket lines because I have nowhere to be, and I’m able to stand for more than 5 minutes at a time. My family travels internationally and we’ve been to six continents, because really – who wants to go to Antarctica anyway? We travel half the time for pleasure, and half to help feed the hungry in places like Africa, because of course I’m able to stand up in the heat. And I’m an excellent traveler.

Each morning at sunset I walk a mile, because in my “real” life, I’m capable of walking a mile. My biggest health concern is the bruise I got from playing soccer with my kids last week.  I’m afraid of reasonable 35 year old fears, like the health of my aging parents, paying for my kids’ college, and spiders.  I worry about things like falling down or needing a wheelchair only when I’m old and should worry about those things. I donate blood regularly, because clinics aren’t afraid of my blood.

But that’s not my REAL life.

I keep waiting for my illness to end so I can start my “real” life, but that isn’t going to happen.  Aren’t we all – young, old, healthy and ill – waiting for life to begin? And while we’re waiting, missing out on our single fragile REAL life?

My REAL life is pain and vomit, sleepless nights and exhausted days.  It’s uncertainty, debilitating migraines and muscle weakness.  It’s sterile medical offices, diagnostic tests, countless pills and bodily fluids.   It’s  finding comfort in the simplest of touches.  My REAL life is fake grins, and genuine smiles. It’s flowing tears and uncontrollable laughter. It’s heartaches and heartburn, slow steps and fast heartbeats.  It’s disappointing defeats and small victories, confusion and understanding.  Missed opportunities, sunsets, sunrises, and unwavering strength. It’s short drives and long naps, endless medical bills and sporadic hospital visits. My REAL life is heating pads and ice packs, chaos and dependence, welcomed compassion and unwanted pity. It’s “thank you’s” and “I love you’s” and “one day things will be better’s”. It’s existing. And living. And thriving.

It’s figuring out life, one day at a time.

It’s fear. And hope.

And hope.

THIS is my one real life. Is it so different from yours?

“Tell me, what is it you plan to do 
with your one wild and precious life?” 
– Mary Oliver

 

Smell ya later.
– Linds

18 Replies to “invisible illness week: JUST ONE life…

  1. I’m thinking about giving it up, frankly. All the stuff you’ve described (in your real life) is my life, plus a few spine, knee, and gi issues. I am feeling more and more that my super handsome husband deserves the life you described first, the “normal” one. And for me, there will either be nothing, or something more – and either of those is better than my now. Please, no responses or emails, my docs are in the loop. Just wanted to share my perspective.

  2. Great post! I think it’s good to acknowledge some of the things we’ve lost, just once in awhile. Then we can move on with the life we have, finding the unexpected treasures in the life we’ve been given.

  3. A brilliant post and a good reminder. Thank you for it. It is true that many of us (me too) live for/year for/dream of the day when our “real life” can replace the pain and suffering we live with daily. Acceptance is hard-won.

  4. Thanks for sharing your thoughts. Honestly though (not that this should make you feel better) you would also need more hours in the day for you and your husband to do it like rabbits each day. 🙂 Hope this brings a genuine smile.

  5. I woke up today with the song “Waiting for my Real Life to Begin” by Colin Hay. After reading your blog post I wanted to share it with you as well. I cannot listen to music any longer due to my ongoing Migraine, IH, Cluster headaches and tinnitus, but I remember the song well. And I read the lyrics today. If you listen to the second verse- it is very compelling for a chronic pain sufferer….

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