Disability Won’t Take my Passions Away
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.
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.
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Posted on February 9, 2015, in Art Therapy, Inspiration, Music and tagged Chiari, Chronic Illness, chronic migraine, Chronic pain, disability, Don't give up on yourself, Fensterer, Find the passion inside of you, Finding yourself again, Gastroparesis, Intracraial Hypertension, migraine, Music and RSD, Music causes pain, Passion is forever, POTS, reclaiming your passion, Spoonie, Tinnitus, visualization. Bookmark the permalink. 24 Comments.
aBodyofHope 
I feel like I’ve put so much on hold for being sick. But I am passionate about writing, food, and travel- no matter what! I am trying to get back into art, because I had forgotten how much I missed it.
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Hi Brittany. Your passions shine through the way your write on your blog. You transfer your enjoyment onto everyone who reads your page.
If you are on facebook, you should come check out Chronically Inspired art share group.
Thank you for sharing the things you will never let go ❤
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Thank you for writing this. I love running, hiking and backpacking. I love to cook extravagant and complicated meals and take all day long walks through the woods, enjoying nature for the day. You’re right, I still love these things. Thanks for the reminder that I still, present tense, love these things.
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You are fighting your illness when you take a stand for yourself in this way. I’m inspired by the power in which you share the things you love. That’s beautiful… ❤
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Stunning to see this! Thank you. It affirms both my personal experience, and also my professional training and research. When people bring their pain along with them, although you might need to do things differently, you CAN enjoy what you love to do and are passionate about.
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I love to hike, camp, kayak and smell mountain air, pine trees, moss, and ocean breezes and listen to the sounds of nature rising all around me. Getting to hop in the car and drive for hours to spontaneously explore my state is something I treasure doing. I love the way that once home, my clothes smell like campfire for weeks and part of my soul permanently lives in that moment before we pack up to go home, where I imagine what it would be like to stay with the trees forever.
I am a painter, a reader and writer, an artist, a lover of colors, music, and painting trances that last for hours or days, and I have always loved to spend the entire day perusing local thrift stores, garage sales and flea markets for ideas for a project, and for the people watching, too. Bookstores and their whispered secrets always draw me inside.
I yearn to do everything from scratch, from growing my own organic produce and herbs and canning a year supply of gifts and edibles, to making my own pasta, bread, and pies from scrstch. I enjoy crafting all of our soap, laundry detergent, lotion, first aid, and cleaning supplies by hand and hope to own a business selling those tested, tweaked, and perfected recipes to others with sensitive skin.
Another wonderful, timely, inspiring post. I don’t have to talk about that stuff in the past tense and that is pretty damn awesome! Thank you darling! What a wonderful frame of thought to operate from! ♡ ♡ ♡
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Jess, I jut love hearing you describe the things you are passionate about. No matter what, I hope you never forget how all of those moments and memories make you feel.
If we could get together and do all the things we crave, we would cause so much trouble! 😉 ❤
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You just made me grin so wide, and I can’t say that anything else on earth would have accomplished that right now. I am so beyond miserable and my coping abilities with pain. And kind of ashamed to admit it.
We would cause so much trouble together!!! 😀 I love that. A new memory to treasure, even if it hasn’t happened yet.
❤ you dearly
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Reblogged this on Random Acts of Snark.
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Reblogged this on Finding Out Fibro and commented:
Once again, aBodyofHope deserves a huge, huge round of applause for reframing something that is difficult and turning it into a positive exercise, one that automatically and effortlessly teaches us new coping techniques. Such a beautiful sentiment, from such a beautiful woman and loving friend.
These are the things that cannot be taken from me. I love these hobbies/passions/representations of myself, present tense, not past. If I could suddenly do them all today, I would still absolutely know my way around each of these activities. I still walk and hike in my mind, I still drive to nowhere and sit by a river and write or sketch for hours, in my dreams.
Here are my three passions that will not be taken by disability:
I love to hike, camp, kayak and smell mountain air with all the pine trees, inhale mossy green scents and ocean breezes, and listen to the sounds of nature rising all around me. Getting to hop in the car and drive for hours to spontaneously explore my state is something I treasure doing. I love the way that once home, my clothes smell like campfire for weeks and part of my soul permanently lives in that moment before we pack up to go home, where I imagine what it would be like to stay with the trees forever.
I am a painter, a reader and writer, an artist, a lover of colors, music, and painting trances that last for hours or days, and I have always loved to spend the entire day perusing local thrift stores, garage sales and flea markets for ideas for a project, and for the people watching, too. Bookstores and their whispered secrets always draw me inside, and inspired my creative side to come out and play.
I yearn to do everything from scratch on a large homestead outside of the city, from growing my own livestock, organic produce, and medicinal herbs to canning a year supply of gifts and edibles, to making my own pasta, bread, and pies from scratch. I enjoy crafting all of our soap, laundry detergent, lotion, first aid, and cleaning supplies by hand and hope to own a business selling those tested, tweaked, and perfected recipes to others with sensitive skin.
Another wonderful, timely, inspiring post. I don’t have to talk about that stuff in the past tense now, and that is pretty damn awesome! Thank you so much, Mary darling! What a wonderful frame of thought to operate from!
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i love running and feeling the wind on my face. i love hiking in the mountains and seeing the beautiful scenery. I love going to Opera’s and hearing the music. I love to camp and the smell of a fire in the fire pit. i love waking up in the woods and cooking breakfast. I love long bike rides on the beach. I love to see the sunsets and sunrises. i love watching a beautiful snowstorm.. thank you for reminding me that at anytime I can close my eyes and feel these feelings again and enjoy the sensations I feel. you have inspired me to write my own blog and because of you I am learning to share my emotions I have bottled up for so long. I love you Mary and still promise to come for you when you are healthy enough to enjoy the sunset on the beach.. Forever your friend…..
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Your passions ARE amazing! Not WERE but are and always will be part of you. I love hearing all of things that you love that help make you who you are. We let so much of that go over time because of illness until we are left with the pieces of us that are broken… but we always were broken. Broken and happy and crazy and wild and passionate about so many different things! But so many years of being in pain whittle down all the different bits of who we are until we are left with the pain and the guilt and the shame…it happens while we aren’t even paying attention. We always had the “bad” in us and we always did have pain and loss, but not every day, not like this. Getting that balance of the good back, reminding ourselves we are made up of so much more, filling time with things we love, making memories that make us smile again- all through the pain… it’s a tall order for sure, but I hear you talk about what you love and I hope you can try along with me to find more of that feeling again. More of you.
I’m so proud of you for writing the way you do on your blog. It’s all so powerful, I often cry. You express so much that I am amazed you are able to go to those very dark places I know I’m still blocking. Keep going! Keep letting it out. The monsters need to be free!!! If the monsters are out then there will be more room for the angels to play!
Thank you for sharing the things you still love. It is beautiful to me- you are beautiful to me ❤
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I so love how you wrote that our passions and loves do not have to crumble along with our flesh—I very much agree with that-what a wonderful way to express it! I still love plays even though I no longer can act in them. I love listening to music and doing some mean chair dancing moves 🙂
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Awe, that’s wonderful Kathleen. Thank you for sharing the things you will forever love, no matter what. I love plays also. Into the Woods is one of my favorites along with Wicked- both musicals, and comedies. What are your favorites?
You have been on my heart so much. You and your family are in my prayers. It’s good to hear from you ❤
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My favorites are Evita, Wicked as well 🙂 and Phantom but there have been many by the local theatre company here that I loved as well. Thank you for your kind thoughts. I so need them this week 🙂
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Sending love to you on this Valentines weekend. I hope you have a lot of love to celebrate- even in this time of loss.
Heart hugs going out to you Kathleen.
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You have such a way of shedding light on things. And what you’ve shared here is truly a glorious mindset! We have not and should not stop loving the things we used to do. I still derive pleasure from those things every day. Somehow, there’s a video playing in my mind of the LONG walks enjoying nature, the wind in my hair and breeze on my face. My love of driving still pleasures me each day -as I give the care giver directions to places throughout the city. My love of cooking still shows each day that I teach the care giver how to cook a new dish. I still dance in my mind and travel my state in my heart. These passions live on inside of me, and always will, unless the memories fade in old age. Thank you for the wisdom you impart with each post!
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Jane, thank you so much for sharing that with me! What beautiful imagery.
After all of these years of chronic pain affecting your body, you remain very much connected to your memories and loves that ignite your soul.
Driving is a wonderful vision of freedom I can relate to- the open road and wind in your hair as so many exciting adventures lay before you and home is still waiting behind… I love road trips.
It feels strange to say it in present tense still, but it’s true, we love what we love! And can’t draw an X through things that help make us who we are because our bodies are a mess.
Thank you for taking me on a little trip with you, on a walk, and imagining you cooking- or us cooking together! Sounds like fun 🙂
I’ll cut the onion 😉
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It would be so nice getting together, Mary. And cooking together would be a bonus.
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It’s one thing to have something taken from you but another to give it away. Your body will continue to hear and be strengthened by the vibrations of the song in your spirit.
Love,
Diana
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I found a new passion – discovering the cauess of lesions. I’ve found a chemical reacin our foods and products that cause sclerosis. Please come read the Mother Load list and see if you use these and if you can find your cause – it’s probably a product ayou use on your eyes or used at one time. . Dear Lord Jesus, please lead this precious soul to your healing in Jesus who died for sins and rose from the dead and delights to give us new life and open our eyes that we may see not just spiritually but physically as well. http://jesusdiedandlives.wordpress.com This is a Christian site and a scientific exploration of the cause of lesions in scientific journals and research.May the Lord bless and keep you. Let me know if you fidnd your cause.or healing in Jesus..
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Wonderful. Thank you so much for your prayer, and for sharing your blog with so much great research! Keep up the awesome studies, and looking to the Holy Spirit for guidance. God be with you on your journey in health and in all things.
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I dearly love to grow my own vegetables, then can or freeze them! I love the feel and the smell of freshly plowed soil, knowing that as I plant the seeds, nurture the plants, harvest the fruits and veggies, that I am going to prepare and preserve them for my family!
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What a wonderful gift you have, Susan! And what a gift to give to your family also. I hope that is a passion you always keep close to your heart. Thank you for sharing.
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