To the Friends I’ve Walked Away From

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I miss you.

I wake up in cold sweats in the middle of the night, losing hours of sleep trying to figure out if things could be different, if there is a way to get us back to where we were before. My eyes jolt open and without meaning to, my brain gears go into motion. I know I’m in for hours of not sleeping.

You say “my friend has cerebral palsy.” You mean me, of course. You say it like it’s a point of pride: she has cerebral palsy, but look how much she’s overcome. But what you say isn’t strictly true. I don’t have cerebral palsy. I don’t even suffer from cerebral palsy.

I wrestle with cerebral palsy. It saps my energy in a knock-down, drag-out, hair-pulling, sucker-punching, war that occurs on a daily basis. My time is spent in our society (perhaps wasted?) fighting fights that should never have to be fought in the first place.

My life can best be compared to being Mark Watney in “The Martian.” I am on an inhospitable planet, where nothing is built for me, there is no infrastructure for my basic needs, and I have to live a life that no one else has ever attempted. A basic thing like figuring out where breakfast (and lunch, and dinner) is going to come from is enough stress to keep one busy every hour of the day.

Maybe I’ve shielded you from this. I put on a pretty smile and go about my day. As an actor I am trained to live in the moment, a skill that is even more useful if you have a disability. Focusing on the onslaught of possible problems is enough to drown anyone.

Or it could be that I was very honest with you, opening myself up to share bits of my disability I would rather brush under the rug, choosing to show you the vulnerability behind the smile, admitting I was tired or in pain when the world would keep turning if you didn’t know.

Both, in their own way, are the price of friendship; both are the price of love. I don’t mind paying either.

But somewhere, things got off track. I got put on a pedestal and, for a long while, it worked for us. I was the inspiration, the frail beauty that you came to when you needed to feel good about yourself. I was the one you took care of for a day, creating Facebook memories and gleaning unforgettable stories along the way.

And then I stepped out of line.

It could have been a thousand different ways, but it happened. Maybe I called you out on the sexist way you were treating your girlfriend when you were dismissing her concerns by saying “some girls just babble.”

Or there was the friend who, when I pointed out her flagrant ableism, got so mad she hid behind her friendship with me as “proof” she was a good person.

There was also the friend who took me out to a show, only to ignore me all night when his all too cute 20-year-old student suddenly appeared and started flirting with him (despite the fact he’s already in a relationship). The last words he texted me in a drunken stupor were “It’s not my fault. Stop talking before I lose all respect for you.”

Perhaps you are the friend who played games for years, going months without talking to me and claiming I was the one who “changed” for the worse, only to act like best buddies whenever the timing suited you. When you did it again this spring, I said I wasn’t going to play anymore. Then you became aggressive, demanding “but I thought we were friends. How sad.”

In all of these cases I wasn’t stepping out of line. I admit, occasionally I do just that. I am human (despite being disabled). I do f*** up.

But to the friends with whom I have cut contact, let’s be clear. I quit the relationships because I have too many other battles to fight. I couldn’t fight your expectations and demands as well.

For the five, seven, ten years that I knew you, you may have thought we were friends, but more fundamentally I assumed we were equals.

And this is why I wake up in a panic every night, spending sweat-drenched hours listening to the Goldberg Variations and trying to slow my brain down. Because I want to go back to that time when I assumed you weren’t using me as an ego stroke. I miss the days when didn’t know I was some vibrator to stimulate your rescue complex. If I could get back to that state of ignorance and enjoy your company again, I would.

I wake up because for years I didn’t see what now seems so clear. What I have to fight isn’t just my own body. The people whose hearts and minds stand in my way, aren’t just faceless ignoramuses in some far off place, easy to be dismissed as “backwards people.” They are in my own camp, people whom I thought loved me.

In the still dark hours of the early morning, I flick on the blinding blue screen of my iPhone to listen to Bach yet again. I think about going back to you, knowing that it may very well help me rest better for a while. But in the end I cannot make you see what you do not want to know. There is very little I can do to change you.

Yes, I might lose sleep. But I will not waste time.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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When I Struggle With Patience as a Young Man With a Disability

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I am an impulsive man by nature. My instinct has always driven me to go forward fast and loud with no regrets. Patience is difficult for me, because from the moment I wake up I want to change the world, and make my cerebral palsy into something extraordinary…. Then reality hits. I’m in a state that’s dead broke and ranked 47th out of 50 in terms of disability rights. I wonder “will the world see my disability the way I see it?”

I don’t like to wait, I never have, but in the last couple of years I have learned to be more patient, because my life is more difficult than that of others. It’s a challenge I’m willing to accept.

Envy is a terrible thing. Sometimes I envy able-bodied people, not because they can walk, but because they can do anything they want on their own time, without a schedule. I just want to create my own schedule where I can be free and not have personal care aides putting me to bed every night. Most of the time, though, I accept my weird schedule and have recognized this is the way life works. You have to move forward and accommodate others, if they are going to accommodate you. Sometimes I act like a little kid and try to stay up longer, but most of the time I’m passed out by 11:30 p.m. anyway. So there are no problems to speak of.

Moving out on my own is an obsession, and has been for the last five years.  I wanted to move out immediately after I graduated, completely oblivious to the difficulties that were right in front of me. As time progressed, that envy bug kicked in again, as I watched my siblings move out before me. However, I began to realize there weren’t any options available. There was a place in Naperville, but that’s too far away from my job, and the rest of the housing I qualify for in Illinois is either government subsidized or in Evanston (ewww). I cope with my reality by going to LaGrange or my favorite place in the world, Chicago, where gorgeous girls are everywhere.  And I’m now on a waiting list to move to a wheelchair-accessible apartment in LaGrange in 2017.  When I’m 30, I’ll be acting like I’m 19… bachelor pad!

I also struggle with patience because I have to deal with a ton of ignorance. I wake up thinking every able-bodied person is ignorant of my disability (unless you are a member of my family, my assistant or my therapist). I think it’s my job to teach every able-bodied person I know of the disability struggle, so it can be understood and viewed as beautiful. I think people under estimate me and that makes me stronger and more determined. I will continue to advocate, until I’m old and gray and even then, I’ll have somebody type out my messages for me via a futuristic computer.

My message to you is this: if you’re disabled, start advocating. Use your voice to show your inner strength and your leadership capabilities. However, be aware that finding patience in the mind and heart is a continuous battle. Thank you for allowing me to show you mine.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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3 Things I Hope My Life With Cerebral Palsy Can Teach People Without Disabilities

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My disability has influenced who I have become in many ways. I’ve found there is much I can teach my able-bodied peers if I choose to be completely open and honest. I want to share words that come straight from my heart; I want to show that I have the same feelings as everybody else. I face some of the same challenges, I just deal with them on a different scale. Here are 3 lessons I hope people without disabilities can learn from my life.

1. I have the ability to provide unconditional love and compassion to others. My love for my friends and family feels deeper than most. I love really hard. I love to hug. I love to smile and laugh. I give people tons of chances; it is very rare that I ever cut someone out of my life. It takes a lot to push me to my limit. I say “I love you” to all my dearest friends. The world needs more of that; it has become a place of terror, selfishness, and coldness. I am glad I have been put in the position to spread so much positivity.

2. I stay physically active with the body I have been given. A disability such as cerebral palsy leads you to find alternative ways to accomplish what is needed on a daily basis. I clean house, I cook meals; I do everything a non-disabled person does, with the exception of driving a car. I will cross that bridge someday though!  My mother has always taught me to make whatever accommodations I felt were necessary. There’s a solution to every problem; you just have to find what works best.

3. I persevere, and I hope to pass that quality on to others. I have faced a lot of trials and tribulations in my lifetime. I’ve gone through feeling unwanted, unsuccessful, and struggle with low self esteem at times, but I have always worked hard to push through all my battles. Find your passions, work to set as many goals as you can, and try to create a life you will look back on and be proud of. At 24, that’s what I’m striving to do daily. I have “off” days occasionally, but an “off” day is OK. Once you realize you can climb out of the self pity-trap, and you learn to take one day at a time, there is no telling what you might achieve.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.
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7 Things Most People Don't Know About My Life With Cerebral Palsy

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Anyone who has a disability can usually tell you what it’s like to have their particular condition. But there are things people might not know, because talking about every little detail about your disability can be a daunting task.  I have cerebral palsy, and there are still things that even my husband might not realize.

1. I love holding hands and cuddling, but my body often will not allow it. For some reason, my body becomes very tense when someone wants to hold me in any form. This can be very frustrating for yourself and partner when you’re trying to cuddle or hold hands. Often I need to hold my breath to keep my body still so I don’t move. It’s frustrating for me, because I love cuddling and holding hands, but my body says no.

2. I have a great bladder, but I still need to use the bathroom. Most people forget that you do need to use the bathroom, even though it can be difficult to get to one. I hate asking to use the bathroom even when I really need to, because I know it’s not easy to take me. So, I often hold it in pain and politely refuse to drink until I can get to a bathroom.

3. I like to be independent, but help is appreciated when offered. When I’m on the floor, I can do many things on my own, which is terrific. But sometimes in doing so, I get tired out or I hurt myself. I’m not being lazy when asking for help. I’m just trying to be nice to my body.

4. Even though I can’t get my own food, it doesn’t mean I’m not hungry. Not being able to feed yourself is as frustrating as not being able to use the bathroom by yourself. I still feel hungry between meals. Comments on the amounts I eat or drink aren’t necessary because you’re helping me. No one analyzes how much you eat or don’t eat. So please, when I ask for a second helping, no need to comment to make me feel bad.

5. My muscles and bones ache daily. I’m never going to complain about every ache and pain I have, but that doesn’t mean they don’t exist. My body moves 24 hours a day, 365 days a year. Even when I “relax,” my body moves. Constant moving wears on your muscles and bones. So please don’t put on a guilt trip when I don’t want to be in a manual chair or do something that might make me more sore. Certainly invite me, but if I say no, please understand why.

6. My children help me with some things, but I didn’t create them to be my personal attendants. Like any kid, my children help us out. I believe helping each other is a normal family action. You might see my toddler pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase. However, you won’t see them cooking meals, dressing me or being responsible for my care. Once in a while, you might see them feed me or give me a drink. But know that I’m helping them as well, like any parent would. My children know we help each other because that’s just what decent people do.

7. I am lucky to have my husband, but not because he accepts my disability. Not to sound snobby, but I never had difficulty getting asked on dates or being in a romantic relationship. Many guys accept my disability and would want a relationship with me. I’m lucky to have my husband because he’s funny, kind, considerate, handsome, likes to have fun, responsible and a good cook.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

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The Brexit Consequences Nobody Is Talking About

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So two weeks ago it happened. Great Britian voted to exit the European Union. I immigrated to England 10 years ago for the exact same reason my forefathers made the reverse journey over 400 years before: I saw in the U.K. the chance to follow my dreams. For me that was being an actor and playwright despite having cerebral palsy.

Back in 2006 and even today, there are more opportunities for an actor with a disability to get work in the U.K. than in the U.S. Sure, when it came to accessibility the U.K. is a savage land. Old buildings, formidable staircases, and an abysmal public transport system for those of us who use wheelchairs meant I would be giving up a good deal of my mobility to chase my dreams.

But with London hosting the 2012 Paralympics, it was a given the city would soon become more accessible to those of us with disabilities. And indeed I was fortunate enough to work as a consultant to the London Underground, helping to make key stations accessible: Green Park, Kings Cross, Earl’s Court. For the first time ever, it seemed as if London was opening up to those of us with disabilities. We could be mobile, grants were made available for adaptations in the workplace, Paralympic athletes were interviewed in the mainstream media. And it seemed, for a brief moment, I had gambled and won. The U.K. was becoming one of the most progressive places in the world when it came to disability.

And then, cuts to disability services started happening. Wheelchairs paid for by the government were taken away by the same party who issued them, the Access to Work grants became next to impossible to get and benefits for those who cannot work due to their disability were slashed. The current government has been so aggressive in cutting the rights and programs meant to aide those of us with disabilities that the country has come under investigation by the United Nations for human rights violations.

And now, Brexit.

Most people don’t realize hundreds of regulations and laws go into making a country more accessible. Everything from the measurements of a door width in public places to the type of help a child with special needs gets in school, the systems that airports and airlines must have in place to help customers with disabilities to pavement widths, must be legislated.

And most of that legislation comes from EU regulations. Meaning when the U.K. leaves the EU in two years, I have no idea what rights I will have as a person with a disability.

The voters and politicians who wanted to leave the EU swear up and down disability rights won’t be affected by the vote, that if anything it will give us the opportunity to improve, not hamper, the rights of people living with disabilities.

These are the same folks who set up the administration now being investigated by the United Nations for human rights violations. I am not prone to believe they have my best interests at heart.

As a disabled immigrant to the U.K., my rights are now doubly in question. While people swear those in power will keep the current EU guidelines intact concerning disability (if not improve on them), I have no reason to believe this. Those same people also claim I am not the type of immigrant some want to see leave of the UK. After all, I create jobs, I pay my taxes, I am an American. And yet I remember one Christmas when the U.K. closed the doors to students applying for a post-graduate visa literally overnight. I remember how last year this very same government capped the amount of money you could receive from Access to Work without much warning to employees or employers. I remember how this government insisted the Bedroom Tax didn’t unfairly target the disabled, many of whom need an extra bedroom for either their carers to sleep in or their equipment.

And these are the same folks who demanded to leave all of those EU regulations behind and “trust” them that new ones will be written in our favor.

I have no idea what my rights will be in two years, and that is absurd. Few people, if any, are offering any answers regarding what we can expect or how we can influence the process. So much for Brexit being a “populist motion.”

Political volatility is rarely good for anyone. But when a country decides to rewrite the laws and regulations affecting the most vulnerable and disenfranchised population, there is little room for goodwill or trust. My hope is the country I once saw as my own land of opportunity does not someday become a place of oppression for those like me.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

 

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What I Don't Let You See as a Person With Cerebral Palsy

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Cerebral palsy, at least for me, is a visible condition. I use an electric wheelchair to get around, I move every time I talk, and even an untrained eye can tell that my left side is weaker than my right. There’s a lot people don’t see, though. This is especially true when it comes to what’s going in my head.

Shaylee.
Shaylee.

The easiest way to explain what I mean is to travel back in time a little bit. In my grade 11 year I had major surgery on both of my legs. One day after I’d recovered and was starting physiotherapy, a friend and I were hanging out at my house having a good time. My dad walked in the door and reminded me it was time to do physio. Since my friend’s mom wasn’t picking her up for a few more hours, she hung around and watched. I don’t remember much of that session, but I do remember the final exercise: rolling. I remember my friend sitting on the couch as my dad lowered me to the ground and I tried to figure out how to roll from one side to the other. I’m sure she wasn’t judging me at all, but I was still embarrassed. She wasn’t supposed to see me struggling with something as simple as rolling over.

This strange need to hide the worst of my disability from others has been with me for as long as I can remember. I never really had sleepovers as a kid because I hated the thought of people seeing my morning process. When I go out to a movie, I usually bring earplugs (which I discreetly put in) to try to lessen my inevitable startle reflex to any loud noise. I never go over to friends’ houses; they always come to me. That way they don’t have to help me navigate their home. If I’m in pain, no one knows unless it’s really bad.

I’m sharing all this with you to illustrate that there’s a lot more to me than meets the eye. It’s important to remember that someone may look fine on the outside, but be struggling on the inside.

And if you’re one of the few people who’s been around long enough for me to let you see the things I hide from others, thank you. Thank you for accepting me just as I am.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

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