What Taking a Selfie Taught Me About My Life With Cerebral Palsy

I’m a Summa Cum Laude graduate with a Bachelor’s degree in psychology, a former honor society president, a respite care worker, a mental health and disability advocate, and a published writer, but one of my proudest accomplishments in life is… taking a selfie.

No, your eyes do not deceive you.  While most other 22-year-olds are celebrating graduations and new beginnings in advanced degree programs or in the workforce, I’m celebrating participating in a hallmark of “self-absorbed, social media-obsessed” millennial culture.

A picture may be worth a thousand words, but a seemingly simple selfie virtually never reveals the complex truth concealed behind it.

I have lived with mild hemiplegia cerebral palsy since birth.  Essentially, the muscles on the left side of my body are significantly tighter and weaker than those on my right side.  Consequently, I perform tasks that many people complete with both hands exclusively right-handed.  Simultaneously holding and angling a phone and reaching over to press a button to take a selfie with my left hand is nearly impossible.

Nearly.

I recently discovered that in the search for self-love and peace with my body and my physical abilities, I was settling for comfort over physical functionality.  In viewing my body through a lens of love and acceptance, I was inadvertently losing the will to foster growth, to push my body to accomplish the impossible.  Embracing my body exactly as it is, tight muscles and all, meant accepting an artificial limit on my physical prowess.  I was forcing myself to plateau in the name of self-love.

As a millennial woman who is constantly inundated with an unending stream of perfectly-posed selfies, I longed to be one of those girls who could snap a cute selfie with either hand — despite my cerebral palsy.  However, I convinced myself that any attempt to take a selfie exclusively with my left hand would result in either a broken phone or a broken spirit, so I carried on with the hackneyed routine of extending my right arm to the perfect angle to take a flawless selfie.

One night, with pin-straight hair, razor-sharp eyeliner, and clad in a cozy, oversized sweater, I felt restless.  Adventurous.  I wanted to try something different, something that would push me in a way I had never dreamed possible.  Despite being caught in the throes of reoccurring body image issues, I was feeling my look, and I wanted to document it.

I immediately knew the perfect way to challenge myself.  With my left hand, I grabbed my phone and began angling it to take a selfie.  Slowly, gingerly, I reached toward the shutter button, trying my hardest to simultaneously keep a firm grasp on the phone and prevent my slightly shaky left hand from wobbling it and, in the process, blurring the picture.

I pressed the button.  The distinctive “snap” of the shutter filled my ears as I discovered that, miraculously, the photo was clear, and my phone remained in my affected hand — not shattered on the floor of my bedroom.  I smiled wider as I realized that I had stopped settling for “good enough” physical capability and had begun reaching towards growth.

Snap.  Snap.  Snap.

Over and over, I pressed that button, relishing the unquellable surge of pride I felt in my body for accomplishing something I never believed I could.  After a lengthy series of critiques, I finally took a selfie I deemed Insta-worthy, and, like a stereotypical millennial, immortalized my left-handed selfie success on social media.

It isn’t the most flattering selfie I’ve ever taken, the prettiest, or the most perfect.  On the surface, there’s nothing particularly special about it.  But it’s more than just a selfie; it’s a symbol of growth, of achievement, of rising to meet challenges, of refusing to plateau.  It’s physical proof that self-love does not equate to settling for “good enough.” It’s a representation of joy in its purest form — knowing the power of pushing the body to its limits to make the impossible possible.

Kelly is an avid writer and mental health and disability advocate with a focus on personal growth. She is passionate about using her life experiences to help others. Her ultimate goal is to make a difference in the world -- no matter how small. When she is not writing or educating others about life with disability and mental illness, Kelly can be found listening to music and cuddling her cat.

Keeping Faith

“Where is it, Where is it?”

 I mutter as I dig through my jewelry box.

My favorite part of my morning routine is accessorizing my outfit.  All the different colors and options; I love collecting jewelry.  But there is one accessory I never leave home without; my silver ring with the word Faith engraved on it.

Frustrated, I exclaim, “How could I have lost my Faith!?”

It’s easy to lose your faith.  Something didn’t go the way it should; your friend lets you down, you miss a deadline at work, you get into a fight with your mom.  You can lose faith in friends, family, coworkers—yourself. So…how do you find it again?

First, tell yourself that it’s okay.  You are allowed to go through a phase where you’re not sure where to turn. When my world has been turned upside down, my strategy is to look upward, inward, and outward.  I look upward to pray, inward to evaluate myself, and outward to my friends and family for support.

Some other strategies that are helpful is to list the people you do believe in. God, your sister, your best friend from elementary school. No matter how lost you feel, if you look closely you will find someone who can shine a light in the darkness to help you find your way back.

List the things you are grateful for. Even if it is just your dog or the free makeup samples in a magazine, it’s something.

What I’m grateful for in my dark moments:

–          My spirituality: I pray a lot and read devotionals, and they are always full of hope.  It is something I believe in when it seems like there is nothing else.

–          My sense of humor: I can typically find humor in any situation and sometimes that helps to alleviate the stress of it all.

–          Friends and family: No matter how many times they have heard it, I know I can always count on the people in my life to encourage me and lift me up.

A few days later, as I clean out my suitcase from a recent trip, I spy a little twinkle of something near the lining.  I pull back the zipper and there it is…my Faith ring.  And isn’t that how it always goes—Just when you’re about to give up, a little glimmer of hope catches the light.

Sabrina Deshner has over 10 years’ experience teaching leadership concepts within higher education and non-profit organizations and has a Master’s Degree in Human Resources. She strives to make a positive impact on individuals through teaching them the importance of personal and professional development and in her spare time does health and wellness coaching. She has a passion for learning, creating new things and sharing stories. You can typically find Sabrina reading, writing, dancing or traveling...oh, and watching Netflix. The quote that she lives by is from George Bernard Shaw, “Life is not about finding yourself; it’s about creating yourself.” Some of her favorite things include: visiting NYC, her nieces and nephews, the color pink, Disney Princesses, and the Golden Girls.

You Look Good But Looks Can Be Deceiving

I wish I had a nickel for every time someone said ‘you look good’ when I was in pain, fatigued and feeling broken.

I like to use to an iceberg as an analogy for what my lupus looks like. Most people only view the tip of the iceberg but there is more than imagined below the surface. The iceberg analogy can be applicable in describing many different illnesses, such as depression. They may look ok on the outside but hopeless on the inside. It’s difficult for people to understand that you’re experiencing health difficulties when you look normal or ok. It’s not like a broken leg with a cast or walking with crutches/cane/walker or using a wheelchair where everyone can see the disability.

My rant begins with an experience I had recently when using my handicap placard. While walking into Jewel to pick up my prescription, I had an older woman approach me who proceeded to inform me that I parked in a handicap space and should be ashamed of myself for taking that space away from someone who ‘really needed it’. At first, I was dumbfounded by her gall but recovered enough to say I have Lupus. She continued to appear agitated with me so I said do you know what that is? A little less annoyed, she said no. I openly admit that I was frustrated and felt like telling her to kiss my @ss but attempted to explain that she had no idea what health issues I was dealing with and tried explaining that I have a heart condition and pain with swelling in my ankle and hip joints. The woman rolled her eyes and walked away before I could tell her that looks can be deceiving. I was raised old school and wouldn’t be disrespectful even though she was disrespectful and rude to me but I would have liked to tell her to mind her own damn business!

There are many disabilities that are not obvious and we should not be so quick to judge! As for my lupus, sometimes I actually have a limp when my ankle, knee and hip joints inflame but most of the time my symptoms are relatively invisible to the untrained eye. There are times that are obvious and others a mere rash on my face or redness revealing the butterfly rash. At times, when I get palpitations I stop, sit or lay down until the episode passes but it can last for hours at a time. I always carry my medicine with me to relieve some symptoms however it can take at 30 minutes for it to work. With my joint pain, sometimes it’s difficult to hold a full glass or cup in my hand or simply button a shirt because of my swollen, painful joints. I cannot lift a gallon of milk due to my joint inflammation! The fevers and fatigue take me down to where I’m confined at home and sometimes to bed. If my hip or knee is painful, sitting, standing and walking takes more effort and I compensate to get around and use a cane also I avoid the stairs. I keep a pull-out couch on my first floor when it’s too difficult to climb stairs due to fatigue or pain. Some days I can paste a smile on my face and fake it while other days I feel ok enough to enjoy activities and other days I’m unable to leave the house.

It’s hard to explain exactly how much having Lupus effects living a ‘normal’ life. I never know when or where that traveling circus of inflammation is going to put down stakes – that means I don’t know how bad the inflammation will be because it can vary from day to day. It’s difficult to make plans since I don’t know how or what will be affecting me most on any given day.

Life, in general, can be unpredictable for everyone.

For me, life is extremely unpredictable every day. I can wake up feeling ‘good enough’ but by noon experience palpitations with a heart rate of 120 at rest without any apparent reason which leaves me feeling fatigued for the rest of the day. Or run a low-grade fever preceded by body aches and chills. Or be up every hour during the night with palpitations or joint pain. Therefore, I try not to commit to activities by keeping everything tentative. When I do give my time to someone or something it’s truly giving a piece of me. It takes genuine effort to get to an activity and be social. True friends and family have realized what it means when I attend functions and don’t take it for granted.

Along with unpredictability, the loss of control is one of the hardest things to deal with. I’ve learned over the years to compensate so I can enjoy life to the best of my ability. On bad days, I rest with only bare necessity activities, on good days participate in minimal activities but get to socialize! Every day I try to anticipate by planning out my day and spacing activities with rest periods in between. I’ve learned to accept when my mind says go go go but my body says no no no!

Living with Lupus has its limitations but it doesn’t make me useless! Yes, some days are more challenging than others but I’m still me, caring, kind, considerate and helpful. I like to think of the classic movie “It’s A Wonderful Life”. If you’re not familiar with it, check it out. It’s about how one person touched the lives of many others without really knowing it. I may not be able to climb a mountain or run a marathon but I can be supportive of those around me and be a good listener. I am a devoted mother, sister, and friend. I can still make a difference in other people’s lives. I try to find the goodness in others as well as myself. Personally, I try not to compare my before lupus life to life after my lupus diagnosis but I think I’ve become a better person over the years, definitely more compassionate, appreciative and in tune to my surroundings.

A little self-awareness goes a long way. With self-awareness, we become better humans, better people. We need to find compassion and acceptance, to accept others for who they are. Life is about acceptance and so is Lupus. It has taken me many years to come to terms with who I am with lupus vs. the life I lived before my diagnosis. Every day I choose to be a survivor, NOT a victim. A life with Lupus is better than no life at all. Right? What’s the alternative… A dirt nap!

I start every day by saying The Serenity Prayer authored by the American theologian Reinhold Niebuhr(1892–1971).
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

Michele Palermo
Michele is a retired registered nurse who spent 15 years in Emergency Medicine. That's where she learned there's a fragility to life. Diagnosed with lupus after going through a divorce has taught her to be a survivor instead of a victim. With her career shortened by illness she turned to books. She fell in love with the written word as a young child. To her, words convey emotion. Her new passion is writing. As an aspiring author, she hopes to inspire others on this roller coaster called life.

3, 2, 1 – Happy New Year!

Making this new year selfish, mindfully selfish.

Me, selfish?

I’m really not in all honesty. I am so in all actuality self-LESS! Guess what I did yesterday? I took my daughters to the movies and we were sharing a mega bucket of popcorn, of course, we emptied it. Free Refills! My youngest daughter demanded more. Neither of them would go and get the bucket filled, of course, I did. Guess what else I did yesterday? In walking back into the theater with the bucket filled with buttery, yummy popcorn, I stopped and leaned against the wall watching the movie. I lingered there alone and ate the popcorn, for myself, JUST ME! The simple things, right?

This year I have given so much energy to bullsh*t. Things not worth my time. Lost sleep, energy and to things that truly hold the smallest amount of value. So, I am just turning the knob down on some things and up on other pieces that I should make more important to me.

I love and anticipate the question, “Any New Years resolutions?” We answer with excitement, goals in mind or keep our treasures and secrets to attack, but have started to simmer with sparks of magic on January 1st. I have done some new today and conversed with others about their plans and to-dos.

Today on this first day, I’ve heard of amazing things to look forward to or anticipate and some worries. I’m always reminded, how do we value one another? News such as a baby announcement that was four years of a holding period. Reminded me that I had the joy of photographing a baby announcement too for a family this Christmas. On a serious note, I have heard of sickness and was reminded of how weak we can get, feel, how we can deteriorate. Tears for my old family and one’s health. Reminded me too, six months ago I was in the hospital from a heart attack at 40. Let’s not take life for granted.  Planning for reviving our home and growing more in my business.

Today is a day to thrive. It’s the feel and buzz in the air.. No matter what the temperature “tries” to freeze us at. It’s been between 3 and 20 degrees this holiday.
No fear though, because you can’t freeze goals, love or promises.

Happy New You!

Amy Scott
Amy is on the great adventure of 40 and all that has come with it this year. From Atlantic City, NJ and raised in PA. She is venturing on life being unpredictable! She is one to find the positive. Adventurer and spontaneous travels are her thing. Fan of Alice in Wonderland, Will & Grace but first a mother. Writer. Photographer. One who is fierce, passionate and guilty of being a lover.

What it Really Means to Never ‘Sell Out’ in the Face of Rejection

You discover your work’s been rejected… again. 

Another rejection.  Another staggering pain in your heart.  Another sinking pit of defeat in your stomach.  Immeasurable anxiety.

Maybe I’m a terrible writer.  

Maybe I’m the only one receiving rejections.

Maybe I don’t belong here.

Maybe I should quit.

Perhaps you are just accepting yourself as a creative, convinced that you should only strive for success on your own terms.  Or perhaps you are experienced, goal-driven, and so determined to succeed that, after that article, you stubbornly refused to revise any further was rejected multiple times, you become willing to do anything to get it published somehow.  But as you sink into the far-reaching abyss of your obsessive tunnel vision, you find yourself trapped on a never-ending, directionless road, blissfully denying that the road you tread will lead you astray — away from the success you seek.

You discover that you walk a road to nowhere.

And then, as suddenly as you began the descent into a world seemingly based on measurable achievement alone — publication, popularity, and prolificity — you stop moving down the winding road that has trapped you for so long.  As you come to a screeching halt, you discover that, in the process of finding your voice, you are losing yourself.  You discover that you are solely seeking gratification in superficiality.  You realize you have become so focused on wearing acceptances like a medal that you sacrifice your life story, but you simultaneously believe that you should pay no mind to how you share it.  In your brutal, dissonant mental battle between altering your story and altering your storytelling — in your inability to seek a middle ground — you cannot fulfill your fullest potential.

As your fear of rejection consumes you and your reluctance to alter your work tears you apart, the story you yearn to share shatters. Bit by bit, you sculpt, paint, gloss, and smooth it of all imperfections, but in its grandiose form, your life story has morphed into something you can no longer place.  It belongs to a stranger, perhaps, someone you have never met, but certainly not to you.  As the lines between your story and your storytelling methods began to blur, colliding in shapeless, colorless monotony, the life you presume to know disintegrates, fading into obscurity.

By altering your story instead of altering your approach to sharing it, you are inadvertently committing a cardinal sin — breaking the longstanding rule nearly every writer strives to live by.

Never sell out.

In the face of rejection, the balance between your story and your artistic choices in telling your story may tilt askew.  If you alter your life story itself in an attempt to please others, you become voiceless.  You sell out.  If you refuse to listen to advice that could improve your craft, you deny your true potential.  You sell out.  Rejection can easily breed either a fixation on solely receiving praise or a vehement denial that improvement is necessary, but true success is a balance, blossoming from within.  Success is following your heart and believing in your capabilities, but it is also acknowledging that your fellow creatives provide valuable advice and only strive to help you improve your craft.  Success is demonstrating personal integrity by sharing your story as honestly as possible, but it is also fostering a willingness to alter the techniques you use to present it.  Success is knowing that, even in the face of rejection, you are talented and worthy of every opportunity you have received, but it is also recognizing that you must grow to reach your full potential.  Success is never selling out on your artistry or your personal growth for the sake of opportunity, but it is also gracefully accepting rejection.

The moment you receive word of your latest rejection, resolve never again to tread down the road to nowhere, the path laced with pressure to alter your story itself instead of heeding the advice you receive on how you tell it.  With a renewed vision and a changed perspective, smile and begin writing.

*Previously published by Thought Catalog at www.thoughtcatalog,com.

Kelly is an avid writer and mental health and disability advocate with a focus on personal growth. She is passionate about using her life experiences to help others. Her ultimate goal is to make a difference in the world -- no matter how small. When she is not writing or educating others about life with disability and mental illness, Kelly can be found listening to music and cuddling her cat.