March = Cerebral Palsy Awareness Month + Review

The month is over. It’s been real. It’s been fun. But it wasn’t always real fun (if we’re being honest). This month was supposed to be a “down” month, meaning no major commitments and/or travel but that went out the window before the month was even half over. I’m not complaining because the month has been awesome. It was just a lot to juggle.

Here’s the Rundown Of This Month’s Posts:
March = Cerebral Palsy Awareness Month
Why Cerebral Palsy?
Spread The Word To End The Word
CP & Hiding
A Philosophical Question With A Convoluted Answer
Why I: Keep “It” A Secret
The Matter Of Disclosure
Truth Or Porn?
Can Inspirational Porn Have A Part In Social Change?
Why Are You So Jumpy?
Chronic Pain & Cerebral Palsy
It’s Not Easy Being Green
The Doctors I Won’t Forget
Why I: Feel A Personal Obligation
Unintentional Celebrity
Why I: Don’t Drive
Self-Driving Cars! Problem Solved?
National Cerebral Palsy Awareness Day
Friendship, Just A Perfect Blendship
Friendship Without Limits
The One Moment

The month may be over but that doesn’t mean my advocacy is. If you have any questions or topics you’d like me to tackle just say the word and I’ll be happy to oblige.

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The One Moment

One common question people tend to ask is, “Are there ever moments when you don’t feel like you have CP?”

It’s always hard for me to find an answer. I was diagnosed with CP around my 1st birthday; for all intents and purposes I was born with it. Therefore I can’t really tell you if there’s even one moment when I don’t feel like I have CP, never mind any moments. I have nothing personally, like a before and after situation, to compare.

One of the biggest reasons I love swimming, as an adult anyway, is because it’s one of the few times when I feel like my CP is a factor (or as much of a factor).

The same probably goes for growing up as well. I just didn’t realize it, or maybe I couldn’t articulate it. Who knows?

And let’s be real for a moment, it’s the one thing that I got any validation about while I was bullied; although even that wasn’t all sunshine either.

I get in and I swim.

I don’t have to tell myself “put plant your right heel on the floor” or “unclench your right hand” whenever I’m nervous, or on uneven ground, or tired, or just because it’s a Saturday.

It’s more natural than walking, even when it isn’t the prettiest most textbook stroke in the pool. I don’t have to “tell myself” anything other than maybe “left, right, left, right” when I can feel myself drift, or “listing” for the boating folk.

More people on earth can walk than can swim, so that counts for something.

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*A similar version of this post was written on September 27, 2014

Friendship Without Limits

As much as I talk about myself and my life; it gets a little boring, at least for me. As a general rule I prefer to speak for myself, but I’m willing to make exceptions from time to time.

So here’s another exception to the rule.

Rosa and I were in the same kindergarten class and have been best friends since high school, history class to be exact.

Here’s her version of what it’s like to have me as a friend. ____________________________________________________________

I can’t honestly say I remember the first day we met. As with many friendships, over the years the time we spend together starts to blend and blur. What I do know is that it was September, I had just turned 5 years old, was in kindergarten, and surrounded by a bunch of new kids I wasn’t familiar with yet. What I didn’t know, is that one little girl named Sarah would become my best friend and we would have a friendship that would last into adulthood.

From what I was told, I didn’t speak a lot of English when I was 5 years old. My primary language was Spanish but I could understand English fairly well. Even though I didn’t speak much English at the time, one thing was clear, I liked playing and sharing stuff with Sarah and we became friends. We were just little girls in kindergarten doing what we were supposed to, like learning the alphabet, colors, and enjoying each other’s company. Later in elementary school the unthinkable happened…Sarah went to another school. It was sad that I thought I lost my friend forever (at least forever in a child’s mind), but again what I didn’t know was that we would coincidentally attend the same high school and start our reconnection by staring at each other in a one of our classes.

That morning during our first week of classes Freshman year I do remember clearly. I could see Sarah from across the room but I wasn’t 100% certain if that was my childhood friend or not. She was sneaking a peek at me too when she thought I wasn’t looking and we were probably half listening to what was happening in class. I kept asking myself if that was really Sarah or if it was someone who had a striking resemblance to her. When it was time to head to the next class, we awkwardly looked at each other but knew we had to break the silly stares and see if we were both right about our assumptions. When we confirmed who we were, we started talking excitedly with goofy smiles on our faces. We chatted about the years we were apart, what middle school was like, our summers, family, anything we could think of. And for the rest of high school, if we didn’t have a class together, we would meet in the cafe or the library during breaks when we were free, to talk about our teenaged lives.  Sarah also got me interested in Theater, so I joined Drama club so we could talk about the scripts, rehearse our lines, and of course, hang out after school and have even more reason to talk on the phone in the evening (and have a good excuse to give to our parents as to why we were tying up the landline for 2 hours!).

We hoped to go to the same college, but sadly that wasn’t meant to be. But we certainly compared our college experiences at our respective schools our first semester, shared crazy stories, complained about some of our lengthy homework assignments, and of course counted down the semesters end and rejoiced after finals week to talk about what we would do over summer breaks. My friendship with Sarah has never been different or unusual in my eyes. We talk about stuff we’re interested in, like to go to the mall and shop around, and in our adult years discuss where we want to see our future’s head to and dreams of how we’ll get there. It’s nothing out of the ordinary, Sarah has always been Sarah to me.

I think we really started to get into in-depth conversations about disabilities when we were in college. Of course Sarah and I had conversation about issues she had, how hard it was getting around, or surgeries, but I still didn’t look at her differently. I knew that if she wanted to go for something, she would try to do it like everyone else. Remembering our kindergarten years I can’t remember Sarah being that much different. We enjoyed similar things and we liked to play, I really didn’t remember her having an assistant aid her in the classroom in kindergarten until she mentioned it one day. I didn’t view Sarah as that much different from anyone else.

I remember one time when Sarah recalled a story of someone looking at her in her wheelchair and talking to her as if she was 12 years old. Her sneakers happened to be the same color of her wheelchair and the person thought that would be a good conversation starter. She promptly let them know through that discussion that she was in college, and Sarah let me know the expression of the person’s face when she realized Sarah was an intelligent young woman. The story gave me a good laugh, because the person had obviously underestimated Sarah’s wit. But it also brought up the topic of how people with physical disabilities often get misjudged because of their appearance. Of course Sarah has to put more thought in how she goes about things, especially if she needs to travel, but the point is that she will still get it done.

It’s been 20+ years since we first became friends and our friendship has grown considerably since then. One thing that hasn’t changed however, is that I still view Sarah as someone who can do whatever she puts her mind to. In some instances she has accomplished some things that I wished I had done like live in another state, volunteer for a year for an organization away from home, go to college out of state, write more creative short stories and start a blog just to name a few. Sarah has always been like a sister, motivating me or giving me a push when I needed it. Someone I can talk to when I felt frustrated, or want to share great news with. She’s my best friend, and no whatever what people see or assume about her physically, she has probably done more than some people our age have done.

~Rosa

*A similar version of this post was written on March 28, 2013

Friendship, Just A Perfect Blendship

“How do you make friends with someone when you have CP?”

I don’t have a laundry list of friends, and that’s O.K. with me. I’ll take quality over quantity any day, especially in regards to friendships.

There’s no magic formula for making friends when you have CP, at least not that I can tell. I have no idea how to respond to such a question. I guess I don’t take the time to think about it. Even so I thought it was a good topic for this month so I wanted to provide an answer past, “you just do,” but I gave it a little twist.

I asked my friend Taylor for his opinion, as someone who has a friend who has CP (Me). As far as friends go Taylor’s one of the best, one of my best. Our relationship is one of a kind, as you’ll probably see, how many people do you meet that know all the words to Its A Great Big Beautiful Tomorrow & will sing it with you?

_____________________________________________________

I met Sarah within the first days of my freshman year. She sat behind me in one of the many orientation ice-breakers we attended as incoming students. Before it began, we struck up a conversation. Sarah was full of life, always ready with a smile and an understated chuckle. I learned she was a transfer student, and majoring in drama. We connected right from the start.

When the game ended, Sarah stood up and I saw that something seemed to be different about her legs. She seemed a little wobbly, and when I offered my help, she said politely but firmly “No Thank you.” That moment was defining: I was not to be Sarah’s assistant or helper. We were to be friends.

I felt privileged to be let into Sarah’s friendship circle. I was happy to get to know her dry sense of humor and biting sarcasm. When I walked into Campus Ministry, with Sarah, it was like floating on the red carpet with a celebrity: everyone knew her name, asked her about her life and classes, wanted her opinion on this or that, the list goes on and on.

Throughout college, we went on some crazy adventures, like going through some scary dark neighborhoods in DC on a hunt for a blockbuster (we made it…barely). At the beginning, people stared and wondered what was “wrong” with Sarah. She would trip and students would gawk.  Other than that, Sarah was “normal”.

Then again, what is “normal”? Certainly not anyone that majors in Drama or Musical Theatre. We all had a kooky sense of humor, wacko work ethic, and an insane amount of sleep deprivation. Sarah was no different. She quickly adapted to the college lifestyle. Taking on Stage management positions and working in the costume shop, her energy was limitless. No matter how her body was feeling, she always showed up ready to work and learn. Though this was the furthest from her intention, she encouraged everyone around her to “suck it up” and “get over themselves”.  (OK, so maybe she didn’t say those per se, but her attitude certainly did.)

People soon got used to Sarah’s CP and her way of life.

Sarah recently came to see me perform a tour. When she arrived, it was like we never left. We had the same banter back and forth over a couple of hot dogs in a diner. We exchanged travel stories and adventures. That’s the thing about Sarah: she has a social spark within her. She is comfortable talking to a brick wall. So it doesn’t matter how long it has been since we’ve chatted, we can always jump back together.

When asked “How do you make friends with someone who has CP?” the answer is simple: find out what you have in common with them. It’s easy to say “Oh, they’re not like me physically, so I can’t be friends with them.” But if you connect on a personal level, like Sarah and I did at the Drama school, then nothing else matters. After getting over the initial hesitation that first day of ice-breakers, I was comfortable seeing Sarah as friend because we were from the same area of the country, had similar interests, and could converse with ease. I am absolutely clueless when it comes to the physical, day-today struggles someone with CP goes through. I DO have a clue about how to make friends though. When I become friends with someone, it’s because I want to get to know them as a person.  And let me tell you, my time is precious; if I don’t find you worthy, I can’t be bothered. Just kidding…maybe.

Throughout her life, Sarah has fallen and promptly picked herself back up, both literally and figuratively. Whenever I see Sarah, I am reminded that she is simply herself. What you see is what you get. Her self-worth is not valued on what she accomplished at Physical Therapy; she wants more out of life. Her CP does not impair her zest for life; it fuels it even more.

*A similar version of this post was written on March 29, 2012

National Cerebral Palsy Day

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Today is National Cerebral Palsy Day, not to be confused with World Cerebral Palsy Day which is in the fall. Lest we forget that this month is Cerebral Palsy Awareness Month anyway.

Can I be honest with you for a minute?

I get so peeved with how disjointed the CP community is.

I know we’re all aware of CP every day. It’s a “side effect” of living with it, naturally. But it’s hard to get people’s attention when we’re commemorating so many different days, with similar names. And let’s not forget about the Green Dilemma.

When it comes to effective awareness more isn’t always better.

I united front most come first.

There is true power in numbers here. CP is the most common motor disability in childhood (and I wonder just how common it is in adulthood because of that statistic). So we have the numbers right there.

What we lack is unity.

I often ask myself why that is. I don’t keep myself up nights thinking about it but it’s rarely far from my thoughts. Other health related communities have strong communities. Why doesn’t CP? Where (or what) is the disconnect for this community in particular, more importantly, how do we fix it?

I don’t know where the divide truly is, but allow me to tell you about some of the divisions I’ve noticed, in no particular order:

-Doctors neglecting to recognize and voice the need for a transition process and quality providers.
-Parents of CP kids not acknowledging potential commonalities between their child and older individuals with CP (and/or vise versa).
The range of ability/disability CP caused by CP itself.
-Lack of organized advocacy, whether under advocating or over advocating for one individual (or a small group).
-Individuals not wanting to disclose their disability.
-Hesitancy (or lack of) role models.
-Lack of large organizations genuinely serving their intended population.
-Lack of awareness of the existing community and seeking partnerships.

There’s more but those are just the highlights, in my opinion.

Tell me. What do you think helps or hurts in the success of health/disability related communities?

Self-Driving Cars! Problem Solved?

Now that I’ve told you that I don’t drive, and why, I figured it was as good of a time as any to dive into another driving related topic within the disability community.

Self-driving cars.

From what I’ve read it seems like most people are all for it when the technology becomes available. But someone please feel free to chime in and tell me differently, in fact I would be more than happy to find a group of people who aren’t all for self-driving cars.

I’m one of them.

It would make my life easier to be able to get myself wherever I wanted whenever I wanted, but I doubt it’s that easy; and even if it is, it shouldn’t be.

I’m not for self-driving cars for much of the same reason why I’m against auto-piloted airplanes.

And I may be listening to a little too much Airline Pilot Guy, when time permits, that has further influenced my stance on the auto-piloting of forms of transportation.

Think about it. Would you want to be on an aircraft with no pilot and/or first officer at the controls? Would you want to be on an aircraft with a pilot and/or first officer didn’t know what to do if there was a glitch or a system totally failed?

I wouldn’t.

Nor would I want to be responsible for a car that drove itself if something ever happened. I don’t even want anyone else on the road like that either for that matter.

What would happen if the computer driving your car malfunctioned in some way? You should still know how and be capable of driving a car (just like how pilots should be able to fly an aircraft without assistance).

Technology is great. But we shouldn’t expect it to do everything it possibly can for us. It may solve a problem but it creates others in the process, considering how quickly technology is developing without adequate safeguards from the get go.

Self-driving cars would solve the “driving issues” for the disabled and it would create a whole other host of issues, in my opinion.

I’m not happy that ableism veiled behind acceptable bureaucracy is keeping me from being able to get behind the wheel and not need to depend on others, but I’m not going to go all in on one of the few things that shows actual promise, because it’s just too good to be true on the surface.

Why I: Don’t Drive

Andi wanted to know, “Do you drive?”

I kind of gave away the answer in the title, keep reading anyway.

Typically this is one of the few questions I don’t like to answer. In an effort to avoid answering it I dance around the answer like I’m an Irish dance champion. It’s one of those things that I’ve been lectured on so many times that I just don’t want to hear it from another person (or from the same person again).

As they say, timing is everything so I’m up for answering publicly because it came at a good time.

I don’t drive not because I can’t; because of the bureaucracy involved in getting a license if you have a disability (which varies by state).

I’ve been through Driver’s Ed (required by my state if you have a disability). I’ve had a diving evaluation (required by the state). I’ve had a few road lessons from a state appointed instructor (required again).

The last part is where the train went off the tracks.

The instructor assigned to me (there were 2 at the time) was quite honestly one of; if not the worst people I have ever met in my entire life. I tried to just suck it up thinking that this wouldn’t last forever, required road instruction for a non-disabled person is roughly 10 hours, so I was thinking 10 hours and I could take the test.

According to her I’d need 200 hours (give or take a few) before I was ready for my road test, and even then she couldn’t guarantee that I would pass. Did I mention that she told me this after my 1st full lesson? (She cut the 1st one short)

I thought this was a little suspicious so I made some calls while I continued with lessons. Her attitude, and by extension mine, didn’t get any better, and caused me to get increasing agitated.

One week I told her I’d have to reschedule my lesson for the following week because I had to prepare for a final exam.

“Well you need to make a decision. Which is more important to you? Getting your license or school? If you choose school and keep canceling lessons you’ll have to go back on the waiting list”

 I (more calmly than she deserved) explained that I wasn’t canceling, that I didn’t want to cancel. I wanted to reschedule. Getting my license & my education are equally important (especially because I was 2 years behind my peers in getting my license, thanks to the waiting list, and I was  hoping for a scholarship the next year to ease the financial burden of school.

I could not reschedule. I had to cancel my lesson for the next week and wait for my lesson the week after.

I went back to my room and considered my options, after venting to a few people.

“She’s supposed to help you get your license. It seems like she’s doing anything but that.”

 I made a call to my assigned instructor’s supervisor. I was told she was incorrect about the rescheduling and he’d have a talk with her about my experiences. I could be assigned to the other instructor if that would make me more comfortable. I was also told I was welcome to file a formal complaint if I so chose.

Fast-forward a few weeks and the adaptive diving instructor supervisor & the other instructor were laid off due to state budget cuts.

I called the adaptive driving department at DMV headquarters & told them to put a hold on my file.

I’m not one to back down easily but I had to draw the line on the mental abuse the instructor caused (I call it abuse because I have no idea what else to call it). The whole system was biased & I refused to be a part of it. It’s not worth it to me.

I’ve gone back periodically to check on the situation but things haven’t gotten any better, in fact they may have actually gotten worse. Since the supervisor I originally spoke to isn’t with the department anymore I went forward with filing a formal complaint with the next supervisor (and every supervisor that’s followed).

I’ve pretty much given up on getting an acknowledgement of my complain(s) never mind a resolution. (Let’s not even get into the chances of an actual apology, no matter how hollow)

I won’t say I’ve given up being able to drive altogether. I’ve just tabled the project, at least for now. (However I wouldn’t turn down any leads that may prove promising if anyone out there knows of any)

Why don’t you get your license in another state?

I’ve seriously considered it, believe me. I’ve also lived in different states so it would be a real possibility, if I had access to a vehicle when I lived in another state. I’ve also considered taking lessons in a neighboring state but you need to be a resident in order to do so, and their diver certification process is pretty similar to my current residential state.

“Do you need any special accommodations/modifications or can you drive a standard car just fine?”

 I wouldn’t be able to drive a standard car (meaning standard vs. automatic). I would drive an automatic car with hand controls, which I’m told is “impossible” on a standard (manual transmission). I learned to drive with hand controls, with the few lessons I’ve had, so it’s how I’m most comfortable.

Initially there was some concern over my startle reflex and how it could affect my ability to drive a car in the traditionally so “we” (the DVM people) opted for a hand control option. I just wanted to drive so I went with it.

Not everyone with CP needs adaptations to drive. I recently met another individual with SDCP in their late 30s who drives like able bodied individuals (I’ve heard of others as well) so there is no one size fits all when it comes to driving.

After having a few lessons I realized that my height (or lack of) should’ve been taken into consideration as well. Using hand controls allows me to sit further from the steering wheel. If I were to use petals I’d have to basically sit with my chest more or less resting on the steering wheel, an unsafe situation if I were to ever get an accident (the airbag would probably cause additional injury as well).

Hand controls are the only modifications I would “need” but I have a few others on my wish list, depending on the vehicle.

It should also be noted that hand controls are not one size fits all. This is where attending the Abilities Expo helps! I have an idea of which hand controls I like best, but it’s something you have to look into based on needs, availability, and other factors.

Do you have a question you’d like me to answer? Leave a comment or fill out the contact form.

*A similar version of this post was written on May 16, 2013

Unintentional Celebrity

Everywhere I go I find at least one person watching me. Even in normal everyday environments like the workplace, but I attribute those instances to employee turnover. Everywhere else I think its genuine curiosity, or at least I hope it is.

I’m sure if I saw the same faces everyday the intense people watching would stop. The only issue I have with that is I don’t like seeing the same people every day, in fact it gets on my nerves. So the only solution is to deal with the looks, the eye daggers and occasional questions.

I’ve heard it said that having a disability, or just being too different, is like being a celebrity without any of the good benefits. Although this wasn’t an earth shattering statement I have to agree.

There was a time when being a celebrity was my ultimate goal. What I didn’t realize at the time was I had already reached my goal. I was basically born into it (my CP is a result of birth).

The difference is I wasn’t the type of celebrity I wanted to be; which is one of my own making, not for just existing. These days I’m trying to find a balance, because my career path depends on it.

People have been watching me for most of my life; so much so that I don’t notice it most of the time, or choose to ignore it when I do. If I let every stare get my attention I’d end up homebound, it’s that exhausting.

I’m not made of iron however. There are instances when lack of a “Que Sera, Sera” attitude get to me. I have had a good cry in the parking lot, or the shower, or just walking in the back door. It happens. To try and deny that would be a disservice to all.

The funny thing is I think I always knew someone was watching me. I never (that I can remember) asked my parents why someone stared at me when all I was trying to do was get milk out of the dairy case.

Although it used to really get on my nerves. Especially if parents said ignorant things to me, like “It’s too bad your legs are broken.” My legs are not broken. If they were I would not be able to walk on them!

Note to parents: If you have a question about a child’s disability ask the parent (still involve the child, be polite after all). If your child has a question about another child (or person) encourage them to ask for themselves (or assist them).

I try and treat my celebrity like a duck with water on its back, just let it roll.

However I also realize that I have a responsibility to the world. I will get noticed. It comes with the territory. I have to put on a good face for the world at large. That’s why you won’t find me dancing on top of anything while drinking on the internet. But it’s not like that’s my thing anyway, it never was. Any “socializing” like that occurs with a group of close friends privately.

I have a reputation to uphold. Not just for myself, for the disability community as a whole. Too many times I get treated badly or just differently based on someone’s previous experience with another individual with a disability, and most of the time the disabilities aren’t similar in any way.

If you see someone with a disability out in public treat them how you would like to be treated. Would you mind if someone came up to you and asked you questions about your life? Realize some people take questions more personally than others.

If you’re really curious there’s always the internet. A whole new world has opened up for people with disabilities and people who want to know more.

There’s also events just for people with disabilities, their families, and friends. Go to one, or two, or as many as you’d like. You’ll get to know what it’s like to be “different.”

And that’s just my life on my own two feet. When I’m in my chair there’s a whole other aspect to consider.

 “I have 26 inch rims on the side of my ass it’s hard not to get attention.”
–Tiphany Adams

I like this for two reasons, the first being it’s funny. The second being it’s just as true as it is funny. The world as come a long way in terms of acceptance but there’s still gains to be made.

I could really do without the dirty looks I get when I’m trying to get to the assessable bathroom in the airport when a mom with a SUV sized stroller wants to use it first, and let’s not forget the business woman who wants the extra space for a layover wardrobe change. People who use wheelchairs have to pee just as much as everyone else.

And can we discuss how people stop dead in their tracks and then complain that I almost hit them in my chair? If you must stop to look around don’t do it dead center of ongoing walk/roll traffic.

And please, you don’t have to jump out of the way like I’m an out of control car coming at you at 90 miles an hour. Simply step aside.

It’s hard to not feel like you’re special when you’re given privileges like pre-boarding an airplane, having the closest parking spaces, or pre-registration for classes, when we’re really more like anyone else than we are different. Please do us all a favor and treat me (or anyone else) how you’d like to be treated, and I’m pretty sure that means no staring.

*A similar version of this post was written on March 8, 2013

Why I: Feel A Personal Obligation

There aren’t many role models in the CP community; some are coming out of the woodwork thanks in large part to social media, but it’s still not a lot, it’s certainly not enough. For those of us who have long been acquainted with the CP community this is not new information.

I noticed that Ronnie posted the speech he gave to the Southern Arizona chapter of CFF. I have a few things in the works that include but are not limited to speaking to groups of people so I’ve been watching other people give talks rather closely. I admire & respect Ronnie a lot so I paid close attention.

(Go ahead and watch before you continue reading because it’s pretty great)

While I can’t completely identify with Ronnie I can certainly relate.

I can relate to growing up and having to devote time to activities that were essential to my physical wellbeing, time that I would’ve rather spent doing something else, and probably making more friends in the process.

I can relate to being told that I “would never” or “I will probably never.”

I can relate to being able to prove people wrong, and not being able to see what I big deal it was (at least in the moment).

Not too long after a tweet caught my attention and fit quite nicely with Ronnie’s speech.

My short answer to this tweet is “Yes.”

My long answer is “I absolutely do,” see the very first sentence of this post as to why.

I feel a responsibility because I wasn’t given the luxury of being able to blend in as easily as my peers. I would be naive to think that no one is ever paying attention to what I’m doing, so I better be doing something “right” or “good” or however you choose to label it, because I’m held to a certain standard (not higher, just different).

Have I always lived up to that standard? Absolutely not and I still don’t, at least not all of the time. Thankfully the majority of my not-so-great moments were reserved for the presence of close friends and family; if I can’t like an idiot in front of them then who else is there(?)

I agree that many people with CP (or other conditions) don’t see themselves to be a role model or even the need to be one. It’s like when a famous person gets asked about their behavior and they reply “I never asked to be a role model,” in my opinion. No, you never asked to be one, very few people actually do, but you are one anyway.

I wish I wasn’t, don’t get me wrong. I wish there were no such need for role models but they’re needed for countless reasons so there’s a need to be one.

You may not want to be a role model but the truth is it’s not about you. (Shocking, I know) It’s about the community as a whole. It’s about the kid who will one day be in your shoes. It’s about you being the “someone like me” you searched for growing up.  It’s about telling other parents what you wish your parents knew when you were growing up.

It’s not about you. It’s about your chance to have an impact on someone else. It’s about giving someone (anyone at all) the chance at the life you wish you could’ve had if you were given the chance to do it all over again, or not.

I feel personally obligated to be a role model because too many others do not.

*A similar version of this post was written on November 20, 2013

 

The Doctors I Won’t Forget

Sarah, of Seriously, Sarah?, wrote about the doctor she won’t forget and how that one person effects how she navigates being a professional patient. Her words hit so close to home that I shared her post on my Facebook page with some of my own thoughts.

I don’t just have one doctor I won’t forget and the same goes for their assistants and office staff. I’ve had enough horrible and incredible experiences to be able to write several books on the topics.

I remember in ’08 when I was looking for someone who could locate (never mind treat) the source of my chronic pain. I went to one doctor who sent me to another. I loved them both and would have stayed under their care if I had more of a support system in place at the time.

Knowing I needed a stronger support system I set out to find new doctors like the ones who opened the door and showed me how badly I needed help, even if it wasn’t going to be coming from them (no matter how much I wanted them to).

I hit the ground running (figuratively) and had my 1st second opinion less than 24 hours after moving across the country. I should’ve taken my lost luggage as a sign that things wouldn’t go well, but this guy came so highly recommended (and I was too jet-lagged) I didn’t even bother with second thoughts.

I should’ve had second thoughts. I should have run screaming out of the office when I was asked (more like forced) to pick the one part of my body that hurt that hurt the most by the radiology technician (because every joint below my belly button wasn’t a good enough answer).

He wasn’t the guy for me. I went home crushed and waited for my formerly lost luggage to arrive from Alabama, while wondering what the hell I was going to do now.

I went to another doctor that someone had heard about. He was great and I would’ve given him the green light but I was “too old” for him, as in “I’d really love to help you, but you’re just too old for me. I don’t see anyone over 15.”

I was 24.

I sat in his office for hours and everyone, except me knew this wasn’t going to go anywhere. I get that private practice is a business just like any other but you’d think someone would’ve said that there was no point even making an appointment.

But because I did like him, and I respected his opinion (because of his background) I asked if he knew of anyone that might be a good fit for what I needed. He told me to go see one of the top doctors in the state. I thanked him for his time (although I wondered if it was really a waste for both of us) and left.

I didn’t go see the doctor he recommended, because I had already seen him. I knew him well. I knew he wasn’t for me.

So I turned to the internet. Surely there had to one person on the entire planet willing to treat a young adult with Cerebral Palsy. They just had to be found, and I was going to do it.

I made more phone calls and a few more appointments. So many that I thought about seeing if there was a world record for the most 2nd opinions and if I was even close to that number (because everyone needs goals, no matter how strange some are).

Then I found a doctor who found one for me, because he was thousands of miles away (but at that point distance didn’t matter) and he knew of someone closer. I took the information to make an appointment but also laid the groundwork to potentially see the guy I found thanks to the World Wide Web, just in case.

I made an appointment not expecting anything to come from it. Why would I after all the appointments I had sat through and how they all ended?

I went thought the appointment, just like I had all the others. It was different but I knew not to get my hopes up. Then he left to review some things and came back to talk to me.

He wasn’t the right person for me either. But he did something every doctor before him didn’t do.

He told me what he saw and then admitted that he could do the job but he knew someone who could do a better job. He’d already called him and he’d agreed to see me.

And the rest, as they say, is history.

I learned a lot from that process but the most important thing I learned is that you don’t get to choose to be a professional patient but if you’re going to be one you have to develop a tough skin because you’re going to carry a few disappointments with you and those are going to affect how you interact with any other medical professional forever. No, I am not being dramatic, at all.

I can’t forget those doctors and I won’t let myself either. As horrible of a journey it was to get quality care they each had a part in shaping the person, and advocate, I am today. Although I won’t go so far as to thank them for it.

What doctors need to realize is that even though someone might be “just another patient” to them they’re not “just another doctor” to that patient, especially when you have a chronic condition with chronic misconceptions.