If you feel down and useless today: Chronic Illness and Chronic Pain

If you’ve been glued to your couch or imprisoned in your bed because of chronic disease or intractable pain…then you may feel trapped, hopeless, even useless. Are you getting tired of staring at the same 4 walls and know that you’ve been made for more?

Whatever you’re feeling right now, your feelings are completely valid given everything you’re going through. Whether you’re feeling depressed or hopeless, frustrated at doctors, even angry at God, all of those feelings are understandable and very difficult emotions to process.

You’ve lost so much in the battle with your health. It’s okay to grieve over your life, and grieve the loss of your health. You built a good life, and the threat of physical invasion is more mentally overwhelming than anyone around you could possibly realize. You didn’t choose this battle, but you’re in it nonetheless.

It’s important to give yourself permission to mourn the things you’re losing. That’s what people mean when they say “be kind to yourself” or “give yourself a break.” Self compassion isn’t the same as self pity. In fact, self loathing begins to dissipate when self compassion enters the picture. If you would show love and tenderness to your daughter or grandmother in your situation, then do the same for yourself. You’re worthy of that care. Dig deep and find understanding and patience for yourself (even if other people around you haven’t).

When we say chronic illness is a “battle,” that’s part of it. Being a warrior is choosing to treat your body with patience instead of anger- even though you may not feel your body deserves your understanding for how it has betrayed you. Being a warrior is giving yourself dignity simply because you’re human, and worthy of it no matter your health or ability status. Being a warrior is staying in this game of life, even when leaving feels like your only option. Of course, battling chronic illness refers to the rigors of healthcare and living through the “hell” in health, but it also refers to giving understanding to the people who don’t understand us in return.

Then, consider finding something constructive to do from exactly where you are. Whether that’s offering to moderate in your favorite online support group, or taking a free web course for something enjoyable (see Domestika.org), getting involved in a weekly Bible study online with a friend (see YouVersion app plans), an online book club over zoom, or getting into a new hobby that you can do laying down.

I know your brain is pushing back with all the reasons you can’t do it, and may already be making you feel that it’s a pointless cause, etc. That’s the same part of your brain that likes to tell you that you’re lazy, and says that no one actually cares about you– it’s just not true, my friend. You’re not lazy, you’re ill. People do care, but they may not know exactly what you need right now. That ugly little gremlin in our brains is a straight up liar.

Just find one new thing, and try it out temporarily. You don’t know where it will lead, who it will impact, and how one small change will help you in the long run.

Your job never defined you in the first place. You are still you and you are still on your journey ❤

You are loved. You are not alone. Please take good care of yourself,

Mary

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Join us at the disabled art share group Chronically Inspired on Facebook where we share our adapted projects, and encourage each other to get back into doing the things we once loved.

Sliding Doors: An exercise in “What If”

“Pieces” self portrait

Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another. 

I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan. 

This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it. 

I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps. 

I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way. 

It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe. 

In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids. 

Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s. 

There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades. 

I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”. 

The door slides again. I step back through the wormhole. 
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.

This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling. 

This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone. 

There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life. 

I’m not entitled to any other existence. 

This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future. 

It’s not over yet.