Disability Won’t Take my Passions Away

Lost Between the Sounds | by Fensterer

If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?

This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams were exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had physical access to.

Then, a few years ago, my health became much worse. I went from moderately mobile with chronic pain to bed bound with a variety of chronic illnesses and chronic pain conditions. Now, I’ve found myself cutting out all of the rest of life’s pleasures from the list of things I love. How can I say, “I used to love music” or “I used to enjoy singing” or “cooking used to be one of my passions”  when these are all lies!

The truth is, I am still passionate about all of these things! Just because I cannot participate in them actively, does not mean the joy has not remained. In fact, when my brain condition and ongoing migraine becomes insufferable, even with no sound tolerable, getting lost into a silent song within myself has at times been my only reprieve from the unrelenting pain. My instruments now live in cases in shelves above my bed, or tucked away in closets. My voice has not echoed against the wall in song for years, but every day an instrument plays… A song cries out loudly inside of me. A different arrangement every single day, melodies no one hears but myself- and this music will not stop just because my ears cannot tolerate sound! No pain, no disability, no illness or mental destruction can take that music away from me.

Just because parts of my flesh weaken, and I am forced to make adjustments and accommodations to that- doesn’t mean that my passions and loves should crumble along with my flesh. There is nothing wrong with how much I desire. I refuse to shut parts of myself off just because I might FEEL more to live with passion.

Even though I can no longer cook, do I not still love it? I don’t need to be standing upright at a stove or walking the isles of a grocery store to envision a new recipe. I can visualize the food in front of me. I can imagine the flavors of a recipe in my mind’s eye. Is this not the passion for cooking still alive inside of me? Even when my POTS makes eating the last thing I want to do, I can still escape my pain through the simple joy of imagining myself cooking. Why would I ever say “I used to enjoy cooking” when that zeal continues to live strong inside of me?

Though pieces of my body may break, though my mind might continue to slow, though things I am able to do may drift away from my grasp, I choose not to allow that which I love break away. I choose to hold my passions that much closer to me.

And for those I let go so long ago, I would like to reclaim them. I ask that in comments, you consider reclaiming some of your own that you know you will always love forever.

-I have always loved to travel.

-Hiking is a love of mine.

-Dancing will always be one of my passions.

Your turn.

Lost Between the Sounds | by Fensterer

Thank you to artist Fensterer for allowing your artwork, “Lost Between the Sounds” to be featured. This was the only image I could imagine for this article, as his powerful work helped inspire it. Check out his other powerful images at DeviantArt.

Broken Things Can Be Fixed

Being Broken, I roll over and apologize yet again. I am sorry I am broken. I mean it when I say it.

Agonizing pain makes me the unbearable one. I moan, I cry, I writhe in pain. That isn’t what really hurts. The real pain comes when it wakes you up. When this beast reaches past me and begins its assault on you. It strikes again in the middle of the day when a young boy wants to play and have fun, but he can’t ask because he loves me and he sees that I am in agony. So he suffers quietly trying not to be hurt that he can’t ask. Always the thoughtful loving child he would not want me to suffer. I don’t want him to suffer and feel alone even in my presence. This disease spreads the pain far beyond my arm, my leg, etc. It reaches out and it latches on to the minds and hearts of those I love. It shatters dreams, it breaks hearts, it damages everything it touches.

Broken things can be fixed. Sometimes. They don’t always look the same when they are put back together. Re-purposing, taking something of one use and redefining its use. That is now the story of my life. I won’t accept being useless. I am not. I have purpose, I have life and use left in me. It won’t look the same. The clay has to be reshaped. The design is no longer of my making. I am now at the mercy. Mercy. Grace given when it isn’t earned. Help, I need help. I have never needed help in my life. Now, I need help. I need to find a way through the darkness.

Independent. I have always been a wandering gypsy soul. Stubborn. It’s in my genes. The hardest thing to navigate has been the stripping down of all of that. I can’t just go, can’t just do, can’t just be “me.” Life has changed. I thought it was for the worse. But, along with being all that I am, I am one thing indefinitely. I am the eternal Panglossian!  I look for hope and beauty in the worst of situations. And I have found some real treasures. Most of all, the support and love of those closest to me. I am actually learning, learning that I can let others love me. Who knew. I thought I was supposed to do all the work, be on top of handling everything, making sure it all runs smooth and without any hassle to those I love. I have never been able to delegate, I don’t trust any one else to do the job without being bothered by doing it, so I do as much of all of it as I can. No, I am not an overachiever lol, not at all. I just want everything to be perfect! Well, guess what? It isn’t, and I’m not. Not perfect and NOT independent. I now am forced to rely on Mister to love me enough to help me. Guess what, strangely enough, he does! I would NOT have known the depth of his love, or the truth of it without this disease. It has brought me faith in another human, in humanity. It has brought me to a humble place where I can learn compassion, a healthy place to serve from.

I am at the beginning of my journey. It’s been just over a year now. There will be many stories on the way. There will be a lot of pain. There will be endless tears and screams.  There will be doubts and fears. I will think many unthinkable thoughts. When it threatens to overwhelm me, I will adjust, take inventory, and recalculate and make new goals. I will find the beauty in the ashes, I will rise up on wings as eagles, I will be more than a conqueror and I will be loved. This is the gift that I am left with facing the beast CRPS. I am given the chance to live in faith, to find hope, to be a light, and to receive love and mercy.  It does have a glorious side and a beautiful ending. No matter what. I live in a broken body and a broken spirit. Broken things can be rebuilt for a new purpose and a new glory and a new day. I am not a broken person, I am just being redesigned.

~Wait for it…..it will be amazing!!!

xo ~Rikki Lin

****************

Today’s guestblogger, Rikki Lin is only one year into her journey with chronic pain and she is such an inspiration already. She has started to rebuild a new chronic life by upstarting an oilfield jobs help page and she creates information posters for the CRPS community among other projects geared toward helping people. I’m very grateful she has given a piece of her beautiful self to us today.