busy hospital corridor with medical staff

The 4 Stages of a Medical Setback

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Unfortunately, my medical conditions can fluctuate. They can flare up, misbehave and happen at any point. No matter how many setbacks I have, it never seems to get any easier, and regrettably, they don’t seem to end.

One thing I do know is there seems to be “stages” we have to go through in order to overcome a big obstacle regarding our health, so we can carry on with our lives.

 1. Denial.

Things can happen in a split second. Your health can be fine, minus the normal aches and pains, which you consider your version of normal.

Suddenly, you’re in the back of an ambulance. Things are going wrong that are completely out of your control. There are beeping machines and a lot of new faces who want a response from you. The only word that make sense in the hospital are “not again” or “this can’t be happening.”

The entire situation is a big blur, and you don’t even want to think about. It may be hard to believe what happened, since things went by so quickly. You’re running on adrenaline and medication. You may sleep a great deal, which doesn’t help with days turning into nights and nights turning back into days. They’re all just the same thing.

2. Sadness and frustration.

When things finally hit home, it’s upsetting. Of course it is! You’re upset that all the hard work you have previously invested in improving your health now seems pretty pointless. This could lead to frustration, and that’s OK. Be annoyed at the fact you are in the hospital, be irritated by the fact that you feel no one is listening to you and be cross at the fact you can’t even rely on yourself to function “normally” for a short period of time. As clichéd as this sounds, you just want to be like everyone else, and, yet again, you are reminded this isn’t the case. 

3. Why bother?

You have been in this position before, and you know you will probably be in it again. The cycle of recovering from something never seems to end. Is there much point putting the time, energy, pain and so much more into getting back on your feet if you can’t seem to keep a hold of it? As soon as things start looking up, your health has other plans. Every time you think it’s going well, you’re proven wrong. You question it more times than you care to admit, yet never quite decide what you want to do. Why bother if you know in the long run you’ll be in the exact same position?

4. Let’s do this!

You’ve reached the final stage, and despite how long this has taken, you’re glad to have gotten this far. Your stubbornness and determination that may have been overpowered during the other stages is back.

Having a long-term condition is by no means easy, but that’s what makes you stronger. Why give up now? You want to gain back control of the whirlwind you have been pushed into and enough is enough! You want to prove to yourself that you cannot be beaten.

If you have managed to come back from all the past setbacks, then it’s possible to come back from the one you are now confronted with. Remember everything you have overcome, look at everything you’ve beaten that should have knocked you down and get ready to do it all again because it’s something that your future self will be extremely grateful for. 

Follow Chloe Tear’s journey here.

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Donald Trump Kicks Kid With Cerebral Palsy Out of Campaign Rally

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On Saturday, J.J. Holmes and his mother Alison Holmes went to a Trump campaign rally in Tampa, Florida, to protest Donald Trump’s treatment of people with disabilities. J.J., a 12-year-old with cerebral palsy, uses a wheelchair as well as a vocalization device to speak.

“We were put out by security,” Alison Holmes told The Washington Post. “Mr. Trump kept saying, ‘Get them out.’”

According to Kimberly DeFalco, a reporter covering the event, Trump ordered J.J. and his mother to leave after the two started chanting Hillary Clinton’s name. Trump rally attendees then began to push J.J.’s wheelchair, shouting “U-S-A,” repeatedly, Holmes said.

“I hate Donald Trump. I hate Donald Trump,” J.J. told reporters through his vocalization device.

On Sunday, the day after the Trump event, J.J. and his mother traveled to Kissimmee, Florida, to hear President Barack Obama speak on behalf of Hillary Clinton. At the Clinton rally, J.J. had the opportunity to meet President Obama, who posed for photos with him.

To learn more about where the candidates stand on healthcare issues, check out The Mighty’s guide to the 2016 election. 

 

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When the Doctor Said We Needed a Permanent Disability Parking Placard for My Daughter

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My daughter Ari was about 2 years old when I had a conversation with Dr. K., our beloved pediatrician. He was a doctor that held true to his beliefs of practicing medicine and serving the patients he saw daily. He was a miracle worker in our eyes and will always hold a special place in our hearts. He saw our children for 20 years before he closed his private practice and pursued other professional dreams. We still miss him dearly.

Our conversation went something like this. “Dr. K., I think we need a temporary disability
placard. Ari is getting bigger and it’s getting a little dangerous dodging cars while I carry her through the parking lots for all the appointments we have. The weekly blood draws, the doctor visits, and trying to make it to all the school activities for Lindsay and Nic is getting
more challenging. Last week I thought we were going to be roadkill when we had a near miss with a truck. What do you think?”

He replied, “Kelli, I think you need a permanent placard, not a temporary one. I will complete a DMV form for you right now.”

“Uh, no, that’s not what I want,” was my immediate reply. “I want a temporary one!” And so the conversation ensued, me with my optimistic attitude that Ari’s disabilities would be temporary in nature, and he with his realistic, empathic confrontation that we were going to need all the
supports in place for the long haul. I was stubborn and held my own in this discussion. But in the end, the reality was that Ari’s disabilities are permanent and not going away. Permanent placard versus Kelli, and The Placard wins.

Three weeks later, the Blue Placard arrived in the mail. It looked so sterile, official, and final. It had Ari’s name on the document. The DMV issues this paperwork accompanied with all the rules and regulations for its use. The form must be kept in our auto while we transport Ari. I learned to laugh and poke fun at my stubbornness in order to cope. “Here is your Passport to Disability; you are now boarding the flight to Cerebral Palsy. Please have your I.D. ready!”

Kelli and Ari in a race.
Kelli and Ari in a race.

Despite my humor, I still had mixed emotions. Maybe we didn’t really need this? Maybe all this would eventually go away? But I also knew that I had better cave to the practical necessities in order to make life easier. So we christened the “passport” at the next medical appointment with Dr. K. My teenagers Lindsay and Nic thought it was great; they got premier parking wherever we went with Ari. They were relieved that we could arrive at our destinations on time and leave sooner. Parking the car at public places once again became a simple thing in life. Score one for the placard.

Today, “The Placard” serves us well. It is like a loyal and dedicated friend. It never complains or talks back. It is used multiple times daily. It is committed to seeing us through all those busy parking lots at schools, hospitals, public buildings, airports, state parks, etc. I must not forget the parking lots at our racing events either. We would certainly not have enough space to assemble Ari’s adaptive racing chair without an accessible spot. Worse yet, we might not even make it to a race start line on time without accessible parking.

The Placard has seen both the best and worst of places. It has heard us complain and vent, and say a terse word or two at cars parked illegally in disabled spots. But the Placard is a good listener and never judges or repeats what is said behind closed car doors. Everything is kept confidential with the Placard.

I have come a long way these past 14 years in learning to accept what I once considered an unnecessary reminder of Ari’s disabilities. Cheers to my ongoing relationship with the Placard!

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What I Learned From People Staring as I Dance in My Wheelchair

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Dating and relationships are something that many people want in life. But with a disability such as cerebral palsy, dating can seem an astronomically difficult task. I have athetoid spastic cerebral palsy which can lead to some challenges socially and romantically. However, at a young age, I set a goal to have a happy marriage, and I don’t give up on my goals.

Last night, I remembered how difficult it can be to be single and have cerebral palsy. My husband and I went to dinner and dancing. With two children and jobs, finding time to have a date night isn’t easy. Prior to having a second child, we used to go dancing every weekend. I forgot about the self-conscious feelings that can flood through you when you’re the only one in a wheelchair at a popular, crowded bar.

My friend from middle school is now a lead singer in a band, and he played at a local bar in town. As I drove my wheelchair to get closer to the stage, I felt aware of the stares. I shook it off. My husband and I picked a spot to watch and not be in the way. Before the band played, my eyes searched the room. I saw some awkward people and those trying too hard to impress others. People walked past me giving the sympathetic look, the annoyed look at my chair being there, confused looks and surprised looks. I saw some pointing and whispering as they looked in my direction.

I’d be lying if I said it didn’t bother me. All I ever want is to fit in socially, like most of us with cerebral palsy do. I tried to get myself together as I gave my husband a smile. I didn’t want to ruin the night because of my self-conscious feelings. When the band started playing, I scanned the room again and saw a guy to the right of the stage. I pinned him as stuck-up, but you know what? I was wrong.

As the night went on, I started to move my wheelchair to the music. I actually love dancing, and I do the best I can without standing. I always feel self-conscious when I start dancing, because I know many have never seen or thought someone in a wheelchair can dance. Usually, I dive right in, but since it has been a while, I started slowly.

To my surprise, the guy I had thought was going to be snobby danced to the right of me. My husband danced on the left. The first set went well as I loosened up. I dance by moving my motorized wheelchair, or with my body as I sit. I usually do a combination, depending on the space and song. Even though I still noticed the stares, they didn’t matter as much.

The band took a break before the second set, and we rested with drinks. I told my husband that people drive me crazy because they give me “the look.” He told me to not worry about what others think. He said that when I stop concentrating on my cerebral palsy and just have fun, others will do the same. Ironically, a girl came up to Jeff and said what a cute couple we were and she enjoyed watching us dance. As she walked away, we both laughed, and I heeded his advice.

After I stopped focusing on my cerebral palsy and just had fun dancing, I suddenly wasn’t dancing alone. I was dancing with my husband and two other guys. We were all having a great time, just people having fun and being in the moment.

Later on, one of the guys asked Jeff what our relationship was, and Jeff said we were married. The guy apologized if he was dancing with me inappropriately, and told Jeff that he was lucky to have me!

Sometimes we hold ourselves back by overthinking our own limitations. We have cerebral palsy, but behind every spasm, speech impediment and wheelchair is a person. Show others that person and things will easily fall into place with the right person.

This story was originally published on Cerebral Palsy News Today.

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How I Completed a Half Marathon One Awkward Step at a Time

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Is it adversity or just life? Cerebral palsy (CP) can really blur lines. Take cooling temperatures for example. Given my spastic CP, my muscles tighten increasingly in the fall and winter. Therefore I must make an extra effort to keep myself stretched out. Some might view this as a challenge, an example of adversity to overcome. Yet I deem the situation simply life. When you know no other way, cerebral palsy becomes your “norm.”

I am not one to feel like a champion over adversity. However, one recent event leaves me beaming with pride. On Sunday, October 9th, 2016 I completed a half marathon. 13.1 miles is a challenging task for most people. Imagine the additional challenges cerebral palsy creates.

“Athlete.” Growing up, that description certainly eluded me. My two brothers played sports, but the closest I came was an after-school basketball program in second or third grade. I took swimming lessons, too, but even those ended once the swim instructor felt I could not advance to the next level. By junior high I received a pass from actively participating in gym class. I earned my physical education credit via an alternative method.

These decisions were well-intentioned. My parents sought to preserve my physical safety, not to limit me — although, I admit back then I wasn’t so understanding. I only grew to appreciate their perspectives while writing my cerebral palsy memoir Off Balanced.

Between my cerebral palsy and lack of history with athletics, I seemed an unlikely candidate to complete a half marathon. Various physical obstacles combined together to intimidate me, taunting “You can’t do this.”

Determination, or maybe sheer stubbornness, protected me. My spirit refused to break. Instead I met the adversity head on, one step at a time.

August 19th, 2014 marked the day I started seriously training for a half marathon. I clipped on my brand new pedometer and off I went. Four-and-a-third miles later, I returned home to shower. The hot water ran down my sore body, bringing great relief. Afterwards I sprawled out on the couch and watched TV all evening. Less than a third of my goal distance rendered me completely exhausted! How could I ever complete 13.1 miles?

Soon I found my answer: consistency. I began walking twice a week, one short walk and one long. Slowly my endurance increased. Eventually the distances for my “long” walks became the “short” distances. Five, six, seven miles no longer seemed trying.

Increasing my endurance involved ups and downs, quite literally! Throughout my training I fell, multiple times. Often uneven sidewalks caused the missteps. Thankfully my  only injuries were only minor scratches or soreness. Still, I recognized the importance of improving my balance. Fewer falls meant risking injury less frequently. Again I discovered progress via consistency. In August 2015 I added reverse crunches to my daily exercise arsenal. Months passed and I gradually noticed change. Full blown falls evolved into slight stumbles. I often thought “a year ago I would’ve fallen,” but I no longer did.

One of my biggest challenges was a fairly sneaky one — self-doubt. An internal voice questioned my abilities. “Are you going to be fast enough?” “You know the Towpath course is narrow. Are you going to be able to stay out of other competitors’ ways?”

I was empowered to silence my inner critic by support received via social media during my training. Others’ encouragement put me in the right place mentally. I approached my speed concerns logically. Before registering for the half marathon, I researched last year’s results. My worries washed away when seeing I could keep pace with the slowest times. Regarding the path’s narrowness, I relied on positive feedback to summon courage. “There is only one way to find out,” I told myself.   

Man, am I glad I ignored my fears about the path! Crossing the finish line and completing the half marathon left many emotions running through me. I was exhausted and hungry, but my feelings of joy, confidence, and pride won out. Two-plus years’ worth of consistency and supportive words all led to that incredible moment.

I’m not sharing my story to brag. I hope my experiences may inspire you, and leave you ready to work consistently towards your goals. I hope to motivate you to divulge your ambitions to friends and family, and enable them to cheer you on.

Here are more details on my half marathon journey.

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Why I Don't Regret Throwing My Leg Brace in the Back of My Closet

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As a little girl, my AFO (Ankle Foot Orthotic) brace was on my left leg almost all day long. Every few months while I was growing, I’d get fitted for a new one, excited to choose what pattern I was going to have imprinted on the brace. If I remember correctly, they ranged from jungle animals to butterflies and even “The Flintstones” characters.

At age 7, with the permission of my doctor and support of my parents, I was able to stop wearing my brace. Frankly, much of the decision was made because of the impact it had on my self-esteem. I didn’t want to feel different in school, and I didn’t want to answer questions. My surgeon, sweet old soul that he was, decided it had probably taken me as far as I could go, and that with regular PT, I could be more effectively strengthening and stretching my weak muscles. My leg was also visibly atrophied, because I couldn’t engage my calf muscles while in the AFO. The first thing we cheered about? “No more buying two different pairs of sneakers!” For years, my mom was forced to buy my left foot’s shoe one size larger due to the clunkiness of the AFO.

High school brought on a whole host of issues for me, most having to do with accepting the fact that CP will be a part of me for the rest of my life. I was very insecure about the way I was walking, and willing to do anything to help my gait improve. Because I’m technically only treated for monoplegic CP, we didn’t focus on a ton of interventions throughout my preteen and teen years. It was a blessing and frustration all wrapped into one.

Annie wearing her leg brace as a child.

Annie wearing her leg brace as a child.

At a routine appointment when I was 17, my neurologist asked if I was willing to be re-fitted for a new, short AFO, as he knew that my leg issues were affecting my mood and confidence. To be honest, I was excited! I went home feeling like I had hope to improve physically, thankful that a doctor could give me that chance. I spent lots of time figuring out the best way to conceal the brace when I wanted, as well as show it off with pride. I even put a sparkly green awareness ribbon on the outside, because who wouldn’t want to spread CP awareness?

I wore the brace pretty religiously for about 6 months, and I felt a difference in my gait at first. AFOs work by keeping the foot in a neutral position. I wasn’t dragging my foot anymore, so tripping began to happen less and less. But with all this came the reality of today’s orthotics:

– I could only wear it with sneakers, so I often felt as if the aesthetic of a cute outfit was being thrown off by a pair of running shoes. I felt like I had to sacrifice feeling pretty and feminine because of the clunky white thing on my ankle.

– A brace must be worn with thick socks to prevent it rubbing against your skin, so this made the summer months rather annoying. It was hot! I would often take off the AFO at the end of the day and find it covered in sweat.

— I loved walking with my brace on to feel my gait improve. I didn’t love taking off my sneakers to find blisters on my foot the size of Texas. After having it re-fitted twice by multiple pros, the blisters didn’t subside. Every step I took was painful.

The CP and orthotics community has made strides to increase quality of life, fashion, and improve ease of wear for kids these days, but we still have a long way to go. I’d love to be at the forefront of that campaign!

At a certain point I had to ask myself, was my brace really worth it?

My answer was no.

As I’ve navigated my young adult years, I’ve had plenty of epiphanies. This one hit me like a train…

Finding my confidence through embracing my left left leg in all of its skinny, slightly atrophied entirety and letting my limp show, well, that’s all part of my story. And it helps me feel SO much more beautiful inside and out than I would by hiding it with a brace. If I can’t embrace these flaws and learn to love them in their realest state, what kind of life am I living?

To all the kids out there who may be tackling the ups and downs with orthotics, keep going!  I will never dispute that they did help me become stronger throughout childhood. My brace was the reason I started walking! Trust your parents and doctors. But after a certain age, they took me as far as I needed to go.  So when you have that moment of feeling like you’d rather just wear cute shoes instead, go with it.

And if and when the time comes, don’t be afraid to throw your brace in the back of your closet for good. It was one of the best decisions I’ve ever made.

 

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