The Proverbial Rug

When faced with an unexpected medical diagnosis of dilated cardiomyopathy, one feels the “rug pulled out from under” dynamic in full force. We may float around in the pool of self-pity for a while, but most likely we’ll exist in an anti-gravity capsule with no sense of direction or purpose.

We try to stay alert and focused as we wait for a clear indication of the next step in our journey but it’s so difficult to hear – equally difficult to see – while floating in this soundless, odorless, dim capsule, our bodies surrounded by thousands of memories of our finest – and less than stellar – moments, and questions that have no answer. Death seems imminent as there is no longer a clear view of our future that once seemed so very promising. Darkness lurks in the capsule corners and we watch, attempting vigilance to keep the darkness at bay.

There is no exit. There are no instructions. There is no beauty and no breeze.

There are other capsules that float nearby but the inhabitants, like you and I, are alone and confused. Some are flailing wildly, overcome with panic, and some have closed their eyes in surrender. Most remain awake and observant, like us, waiting for the epiphany of a MacGyver-esque escape plan or a maybe a hero who will burst through the isolation with answers, instructions, and comfort.

As time passes slowly the Encapsulated Ones go through the motions together…isolated…alone.

Six months into my own encapsulation, I can look back and clearly see the path I’ve traveled even though the path ahead remains foggy. There were days when the darkness of depression consumed my isolated world, and there was a day or two that I closed my eyes in surrender to it all. Even though there is still no exit I have been visited by many heroic souls who decorated my capsule with colorful – sweet, blessed color! – messages of love.  My capsule is more comfortable now.  My world is less stark and I am more content.

At this random moment there is an inaudible message that permeates the capsule and fills the air around me. My world has changed and I cannot return to the exact being I was before the encapsulation, but that does not mean I will cease to exist. Call it a second chance, a new start, or whatever you like, but it is an opportunity to continue to live my life although with a different purpose and direction. This is not the end, but the beginning. I am profoundly blessed to have spent this time in my capsule, learning that I am loved by so many more people than I ever imagined. It has been a precious and wonderful gift to know that my existence has meant something to this world. I have worth! I am loved! I don’t have to know all of the answers to my questions right now; in fact, I don’t have time for that right now.  I’m in a hurry! I have an idea – no, I have several ideas! I can do this, or I can do that! I finally have time for those, and those, and those, and those!!  Oh for crying out loud – I am READY!

And with that, my being moves past the capsule boundaries and toward the purpose that awaits me there. I do not look back. I cannot go back to being the person I was, and I accept that with a grateful, albeit tired, heart.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Walking a Painful Mile

The old adage “walk a mile in his shoes” is a good credo to weave into your way of thinking. Consideration of others and a nonjudgmental attitude goes a long way toward lifting spirits and making the world, frankly, a better place. Scripture also warns us not to judge others. My favorite is Luke 6:37.

For those of us with chronic internal pain or limitations like congestive heart failure and osteoarthritis, this attitude defines our world. Don’t judge me if I just cannot summon the strength to talk with you on the phone. Don’t accuse me if you see me hobbling slowly around the grocery store. Stop yourself when you start to feel impatient with me.

Memes abound on social media now that encourage us to evict the negative people from our lives because they’re slowing us down. Let me just take a moment here to tell you, in all your self-centered righteousness, that maybe you need a little slowness in your life. Maybe you need to come spend some time with me so you can appreciate your energetic life. Maybe you don’t “need” me in your life, but just maybe I need you in mine, you self-righteous snob.

Spend a day walking in my shoes, if you have the guts. It’s no picnic in spite of the fact that I do not whine to you daily about how terribly handicapped I am now and how much I hate being handicapped. Put on your “big girl panties” and get ready to give up…totally give up…the life you have known. Get ready for a few surprises:

  • Getting up from a sitting position is difficult and painful (this includes getting up off the toilet)
  • You cannot trim your own toenails anymore
  • You cannot lift your left leg, so climbing in and out of the shower requires the help of the fifteen-dollar handicapped stool you have to keep in the shower to sit on because – you can’t stand that long without excruciating pain
  • You’re already on three different types of medication for the pain, and six more because of your congestive heart failure, so popping an Advil isn’t an option
  • You can’t cook anymore. Standing in the kitchen even for the 30 minutes it takes to fix a spaghetti dinner is painful and slow. Remember – you have to use a crutch to walk, so every step in the kitchen is limited to one available hand. By the end of the 30 minutes, you’re soaked in sweat from the energy you burned up moving around. And think about it – how do you get that pot full of water from the sink to the stove? By carrying one manageable container at a time from the sink to the pot. How do you drain the pasta? You ask for help, or you dip it into a container to haul it to the sink where the colander is waiting.  No more quick, two-handed, two-legged moves.
  • You can’t go to work anymore. There is no more praise from the boss, no more team challenges, no more laughs from colleagues, and no more feelings of accomplishment as a corporate team.
  • You are confined to your house most days. Isolation imprisonment. Which, frankly, you don’t mind too much because your personal hygiene habits are going by the wayside.
  • You cannot clean the house, and you cannot afford a maid. So you sit among nose-burning dust, tumbleweed dog fur balls, and cobwebs galore. You’re not afraid of spiders anymore because you don’t have the strength or mobility to fight them.
  • You sleep on scratchy, dog hair lined sheets on the bed most nights because pulling off the comforter and washing the bed linens is literally an all-day project.
  • Are you still reading? Or perhaps you’ve already grown tired of the list and you can’t imagine ever allowing life to imprison you this way. “I’ll work through the pain,” you think. Yeah. Right. That’s what I thought too. Sit tight, Starbrite. You ain’t seen nothing yet.
  • Intimacy is a thing of the past. There is no position that doesn’t hurt or leave you exhausted.
  • Every single day you have to face the fact that you are just a fraction of the person you once were
  • Your mind wrestles with depression every day. EVERY day.
  • You can’t eat, because with such limited activity, everything causes weight gain.

I could go on, but for your sake I won’t. You’re damned right I’m angry. I’m trying to accept this; trying to get on with what’s left of my life, and trying to remain positive for your sake.  I’m going to leave you with two simple thoughts:

  1. To the nonafflicted:  STOP JUDGING OTHERS
  2. To the rest of you (us):  STOP JUDGING YOURSELF!  You do have a purpose, and there IS hope, and although this is a different life, it is still your life, and you are going to figure it out and be amazing.  Stay tuned for that post.  Fun times!

As for now:  I need a nap.  That was a lot of emotion.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016