Cerebral Palsy Awareness Month: 2019 (Review)

Cerebral Palsy awareness month ends this weekend, which means today is the last day for my month-long marathon of posts. I always say that it gets harder and harder to come up with topics each year, and this year was no exception.

However, this year I managed to stir up more controversy than usual. It’s not something I intended on doing but I’m not 100% sorry for anything I’ve said either. So, I’m in a different position this year than I have been in years past. I’m happy to have a blogging break but I’m taking what I’ve learned this month and I’m going to use it in my future endeavors, in some fashion.

Rather than try and sun up the month with some grand conclusion I’m just going to outline all of the posts I’ve written this year and include some others.

As for next year, we’ll all just have to wait and see what happens.

2019 Posts:
Cerebral Palsy Awareness Month: 2019
That Thing About The Road To Hell
A Question About Questions
Spread The Word
End The Word
Back To Basics
Growing Up Disabled
Cerebral Palsy: Blogs
Cerebral Palsy: On Twitter
Cerebral Palsy: On Instagram
It’s Not Easy Being Green
Cerebral Palsy: Books
Cerebral Palsy & Aging In Community
Difference Is OK
Cerebral Palsy: Movies & TV
7 Questions: A Few Years Later
Cerebral Palsy Awareness Day
Poor Fortunate Souls
Chase Dreams, Change Dreams
Cerebral Palsy In The Future

(Previous posts)

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Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Today is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

Last year there was (finally) a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says today is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

*A similar version of this post was written on March 25, 2016

7 Questions: A Few Years Later

A few years ago, in my 20s, I did an interview on another blog. I thought it would be a good idea to update my answers. Plus, I’m running out of topics.

Tell everyone a little bit about yourself.

I’m in my 30s. I have a master’s degree in theology. I work full time as a speaker and writer. I also contribute to medical education and improvement of medical care for people with complex and chronic health conditions. I also have a few part time positions. I live on the East Coast and still prefer to keep things low key. I have fully embraced my introversion and often don’t get out of my PJs to get work done.

Can you share a little bit about your CP, and what kind of therapy was most helpful for you growing up?

I have Spastic Diplegia. I’m a GMFCS level 2 (last time I checked). I had PT at least twice a week from roughly 1-15 years old. I can’t say how helpful was or not because I didn’t have the opportunity to try anything else. These days I swim (on my own and with a coach) and go to the gym (with a trainer) 1-3 times a week, depending on my schedule.

How has having CP affected your life, do you think?

It’s still hard to say how CP affected my life growing up but I do think it affects my life more now than it did even a few years ago. Part of it is by choice, because I make a living by talking about the fact that I have Cerebral Palsy. The other reason is that although CP doesn’t get worse it does make aging more interesting. I have more difficult days with joint pain, spasms, etc than I used to have (I think). I’m doing more to manage my CP than I had been, just to keep myself in the best shape possible.

What’s been your greatest success?

I still think I’m waiting for my biggest success but getting a post grad degree was a big success. Also being able to use my live with CP to improve the lives of others with CP means a lot to me.

And what’s been your biggest challenge?

My biggest challenge depends on the day, if I’m in a lot of pain my biggest challenge can be getting out of bed, other days it’s trying to figure out the best way to get to a speaking engagement, sometimes it’s the metal challenge of getting through a swim practice or workout. Luckily my schedule is flexible enough that I can make adjustments when needed.

What’s your biggest aspiration?

My biggest aspiration is to have a career where I can sustain myself with as little assistance as possible. I really like being involved in medical research and education from a patient prospective, so I’d like to stay involved in that in some aspect. I also may teach at some point in the future, what I’ll teach is still a work in progress, but it’ll happen.

What advice would you have for parents raising kids with CP?

They probably don’t realize they’re disabled as much as you do so treat them like a normal kid as much as possible. Don’t lower your expectations just because they have CP. Don’t take what other people, like doctors, as gospel truth. There’s a lot going on in terms of care and treatment for people with disabilities and chronic medical conditions so what you were told five years ago may not be true five years from now. Seek out multiple opinions and do what’s best for your child don’t be sold on the “in thing” to do.

So, there you go, some of my answers are different, some are mostly the same. I’ve learned a lot more about myself and about Cerebral Palsy in the last few years. Oh, to be in my 20s again, or not, sometimes being young and stupid can double edged sword.

It’s Not Easy Being Green

When you think of March what color do you think of?

I’m guessing green since St. Patrick’s Day is in March & St. Patrick’s Day is all about green (at least the “rated G” version is).

Guess what color Cerebral Palsy awareness is?

Green.

I believe I have figured out one of the barriers of raising awareness for Cerebral Palsy.

Allow me to take you through my thought process.

October is breast cancer awareness month.

The color for breast cancer awareness is pink.

A color most associated with October is orange, due in large part to Halloween.

Would breast cancer awareness be as big as it is if February were its month?

Something tells me the answer is yes, but it’s still something worth considering (especially for the sake of this argument).

There are too many similarities in the basics of St. Patrick’s Day & CP awareness. There’s not enough curiosity of “check it out” factor to make awareness easier (but that’s just my opinion).

There’s also been talk of why green is the color for CP. Green happens to be one of my favorite colors so I have no problem with it, but I know not everyone is a fan.

I’m curious as to why March ended up being CP awareness month. Let us also remember that the r-word day and Down syndrome day are also in March.  It just seems kind of odd that a lot of disability related awareness is in one month. If this was on purpose then why isn’t March “Disability Awareness Month”, which is actually in October (or has that now been deemed “Disability Employment Month”).

Is the confusion part sinking in yet?

I’m not suggesting that we change CP awareness’ color or its month. It’s too “late” in the game for that. Changing any of those details now would just add to the confusion and just continue to feed into the attitude of “un-awareness”.

So what’s a community to do?

The answer is easy.

It’s the execution that’s more difficult.

The good thing about the CP community is that all its members are used to difficult. It’s practically in our DNA.

The solution?

Be the loudest group.

However, it’s not a “he who yells loudest wins” situation (although that would make things slightly easier).

The CP community needs to be the loudest but it also needs to be the smartest (as well as the stubbornest).

The odds are stacked against the CP community. They always have been, and for way too long.

I think Kermit the Frog said it best, “It’s not easy being green.”

*A similar version of this post was written on March 26, 2014

Cerebral Palsy: Blogs

I used to spend a half an hour each morning (at minimum) reading blogs. This was before Tw!tter & Inst@gram so it was less mobile and took up more time. Over time I unearthed a collection of Cerebral Palsy related blogs that increased my blog reading habit, and often came at the price of me getting to my first class on time (not kidding). Eventually it became a separate page on my blog that I was updating constantly. These days it’s harder to keep up with so I’m turning it back into a normal post.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Crutches & Spice

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Our Life With Cerebral Palsy

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

End The Word

I wasn’t going to post this this year given that End The Word has become Spread The Word but I’ve heard the R-word used more frequently than in years past so I just wanted to provide a refresher.

I stayed away from taking a stand on the r-word for many years on purpose, basically because I don’t feel like “the r-word” applies to me and I don’t have a strong opinion on it (at least not in comparison to others). I’m also not a big fan of banning words. There are words in the English language that I won’t ever say out loud under most circumstances but I don’t think banning a word and pretending it never existed is a great idea. (But if someone ever wanted to get the ball rolling on banning the word “panties” from existence I’d be game)

I know there are people out there who think my thinking that the r-word doesn’t apply to me as some kind of defense and I’m sure on some level it is.

For the record I have had the r-word pointed in my direction. There have been times I’ve told people that I have CP and their next question is, “So are you retarded?”

Let me just say, no I’m not, for the record.

One of the biggest misconceptions of CP is that everyone with CP, which is a physical disability, also had a mental disability. This is not the case for everyone. I, myself have LD & ADD, but both are relatively mild and neither make me retarded.

I realized that I was saying something by not saying anything directly. I’ve been implying that the r-word is OK with me, and truth be told, it’s really not.

I can sum up my thoughts on the r-word in one sentence.

Ready?

Keep in mind that these are my personal feelings, and my personal feelings only.

Pick another word already.

If you’re going to try and insult me, please be a little more creative. I’ve been on the receiving end of insults for the better part of three decades and they’ve varied only slightly. I don’t even consider them to be actual insults just hollow sounds, think the teacher in Charlie Brown cartoons.

If you want to hurt my feelings evolve with the rest of the world and leave the r-word behind. Finding some other way to insult me will get your mission accomplished. Calling me the r-word will only make you like a fool, at least to me.

In “The Last Lecture” Randy Pausch suggests going for a cliché because they’re clichés for a reason, most people have never heard of them.

As much as I liked listening to “The Last Lecture” and find it valuable I have to disagree on this one point. If you want to get under someone’s skin there’s a 99.99% chance that they’ve heard every cliché, and then some. Stay away from being average if you really want to get someone’s attention.

If you’re still using the r-word to offend someone it’s about time you update your vocabulary to something much more cleaver. You aren’t going to get the reaction you’re looking for (at least out of me). I’m more likely to walk past you and call you a dope under my breath.

If you’re using the r-word “because you don’t know any better.” It’s the 21st century, you know better. You choose not to educate yourself.  So you also fall into the “still using the r-word” category. That’s your problem not mine; who looks stupid now?

*A similar version of this post first appeared on an old blog on March 5, 2014

May The Choice Be With You

I’m finding out that the older I get there’s so much more to learn than I ever thought there would be. I’ve often told my dad that, the older I get the dumber I feel, and most days I mean every word. Surviving Sandy was no exception.

I’ve lived through hurricanes before. This wasn’t my first evacuation either (and if I never have to do it again that’s fine with me). But there’s always room for another first.

I’ve always considered myself a tough person, kind of, when a lot of people tell you something, you start to believe it.

Up until recently my dad was an engineer for a major power company; I grew up knowing that having electricity is a right as well as a privilege.

I learned at an early age that there’s no master switch at your power company that someone uses to turn your power back on.

Going to work with dad often meant hanging out with a crew of linemen and bringing them coffee.

During major outages when it’s “all hands-on deck” my dad even worked as a lineman.

My parents (although largely my dad) have always stressed being prepared. Although a situation may not always be ideal do everything in your power to make sure you can in fact survive.

During my service orientation the concept of “no energy days” was brought up. I thought it was an interesting idea, but I was already giving up internet, cable, and who knew what else at that time. I didn’t want to jump on the bandwagon before I actually moved into the house or talked to my housemates.

Sometime later and over dinner we discussed bills. It was suggested that one person in the house handled the bills. We agreed, but also wanted to be kept in the loop. I for one didn’t want one person telling me what I could or couldn’t do just because they paid the bills.

“No energy days” were appealing. We were all curious as to how far we could stretch ourselves in certain areas. The volunteers from the year before had “no energy days” regularly; I figured we could do it too, and better (although it wasn’t a competition, my brain often made one between the two groups).

I don’t remember many of the details of our “no energy day,” or how many we had. But when it came down to it it didn’t make much of a difference to us as a community, we were already unplugging things when they weren’t being used, we embraced, the fireplace, wearing layers and blankets before turning to the thermostat.

I also lived with a Montanan. For those of you who have never lived with a Montanan let me explain to you just how this impacts your life. They’re like the boy scouts on steroids, at least from what I’ve experienced.

And repercussions of such never leave you; like deciding to stay home in freezing temperatures because you have a mummy bag, plenty of stored up water, reading to catch up on, and a headlamp to read by.

Fast forward to Sandy. Honestly, I should’ve been able to handle it better. I have the skills and the know-how. Living without power, for example, for an extended period of time isn’t ideal but its doable, people survived without phones and TVs and such for hundreds of years after all.

Somehow in the personal debriefing of the situation, and unpacking, and organizing, a thought crosses my mind.

Choosing to go without has a purpose behind it, like self-discovery or solidarity or simplicity.

Going without do to circumstances beyond your control requires more out of a person. It requires just one more thing for you to do without, but it’s the biggest thing most people don’t want to give up.

Control.

Next time you find yourself going without, in whatever form that takes, may the choice be with you.

One More Thing: Next time you have a power outage & you see a crew of linemen out there working to restore your power bring them some coffee (or a thank you card). They not only work hard but long hours (12-16 during major outages) & many of them wouldn’t dream of doing anything else.

*A similar version of this post was written on November 13, 2012

10 Tidbits: A Guest Post

I asked my friend Mary to guest post today. I “met” Mary after the death of Jack Morris when I had the idea to look up tributes people may have put together. Mary’s blog, Finding Joy In All Things, was the first one on the list.

Mary and I were in the same volunteer program in the same year. However, we were in different regions, so our first meeting had to be delayed a while. Each region has an orientation so while I flew off to the great Northwest, Mary was in New York. We probably passed each other at 36,000ft if the dates line up right.

I asked Mary to do a “response of sorts” to something I wrote last year on advice in long term service. It’s pretty awesome. Enjoy.

  1. Be gentle with yourself.  This was the best piece of advice I received at orientation.  You will face many challenges this year, and it helps to remember in these situations that you’re doing the best you can.  You don’t have to be perfect to be exactly what’s needed.
  2. Your experience is your own.  You’ll hear lots of stories from former Jesuit Volunteers, coworkers, and folks in your city about previous JV communities.  Remember that everybody has a different JV experience, and everybody brings a unique set of gifts.  Let your experience be your own and know it won’t resemble anyone else’s.

3. The four values are yours too.  There’s no JVC police enforcing a specific way of living the values of simply living, social justice, spirituality, and community.  You’re a grown up now, and you can choose how to live your life – including how you (or how you don’t) live out the four values.  They will be much more meaningful if you make them your own.

  1. Practice indifference. This is a fancy Ignatian way of saying “be open.”  It’s impossible not to have any expectations or preferences about what your year will hold, but try to be open to whatever your year has in store.
  2. Journal. I went through about four journals in my JV year, but I also write too much.  These journals are some of my favorite keepsakes from my year.  I love rereading them and remembering the moments and people that made my year special.   If you’re not a writer, consider taking pictures or drawing or whatever it is you do to remember things down the road.
  3. Consider making a house journal. My roommates and I got this idea from an FJV who had a traveling journal that was sent from roommate to roommate after their year ended.  We started our own mid-way through the year, and five years later the journal is still making its rounds.  It’s a nice way to stay in touch with community members after you go your separate ways.
  4. Find creative ways to amuse yourself. An $85 a month stipend doesn’t go very far.  To amuse ourselves in an isolated city (Syracuse, New York), my housemates and I played a lot of “full contact” spoons, sardines, telephone Pictionary and spent a lot of time outside.  We learned to find joy and entertainment in simple things like baking, preparing meals, writing letters to other communities, and planning get-togethers with friends in our city.  Even though we were broke, we managed to entertain ourselves.
  5. Travel. Especially if you are on the East Coast or have other communities within driving distance.  My community members and I took trips to Georgia, Portland, Newark, New York City, Pennsylvania, Hartford, Ottawa, Watertown, and DC all on $85 a month (see find creative ways to amuse yourself).  Tip: bring food for the car from home and accept hospitality from other communities.
  6. Update the folks back home.  When your year ends, it will make a big difference if your friends and family back home know what happened during JVC.  You will meet people and have experiences this year that will potentially change your life, and your transition to post-JVC life will be easier if the folks back home can talk to you about them.
  7. JVC doesn’t end at the end of your year. Even though it may not seem like it at certain points in the year, the year of service will not last forever.  Much more of your life will be spent out of JVC than in.  JVC is really just the prep year, the year that will “ruin” you for life, the year that will color the way you see many things for a long time.  Remember that you don’t have to figure everything out this year and that the journey is just beginning.

Bonus: JVC is the “real world.”  I got a lot of flack and heard a lot of jokes about doing JVC to postpone entering the real world; as if JVC was just playing pretend for a year.  I think people equate real with having more than $85 in expendable income every month.  From my experience, JVC was just as real as any other part of my life, and I saw and experienced things I never would have if I had just gone straight into a “real job.”   I’m a better professional and better person because of my year serving in JVC

*Sorry about the formatting. I have no idea how it happened, or how to fix it.

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

Things New Volunteers Should Know/Remember

For most of the summer I received emails from the organization I was a volunteer of. Most of them were pretty standard, even the “we still need 3 volunteers, spread the word” email. I was sent the email with orientation information, since all former volunteers are invited, and asked one more thing.

“Do you have a sentiment to share with the new volunteers?”

Yes!

The trouble is it’s hard to put on paper, especially for people just leaving orientation. Your brain is swimming with anything and everything. I knew the chances of something I said sticking are slim. Now had they asked for notes for a volunteer’s first few days/weeks at placement, that’s another story.

Dear newly missioned volunteers,

You’ve probably been at your placements just a few days, even so here are Thirteen Things New Volunteers Should Know/Remember

  1. Orientation was like boot camp, but you’re not done, there’s still more to learn. Each. And.  Every. Single. Day.
  2. You aren’t there as a fill in or a substitute. You are there because they wanted you.
  3. There’s a reason for every workshop you sit though, take it from someone whose housemates are now married (indeed to each other).
  4. You’ll have at least one moment during the year that is screaming at you to turn around and go home. Don’t.
  5. Find a mentor, at your placement, in your larger faith community, in your neighborhood, it doesn’t matter, just find one.
  6. No matter how you decided to handle the holidays you’ll end up homesick, and probably crying at some point.
  7. Focus on community; the one in your house was given to you but build one outside of the house as well. Both will make you a better person, and help the other community thrive. You’re in individual who is part of a community, don’t forget.
  8. Be open to things you never considered. Say yes when you always thought you’d say no, but know that it’s O.K. to say “No thanks.”
  9. Very little will turn out “like you thought it would.” That’s a big part of the beauty of what you’re doing.
  10. You will love. You will hate. You will fight. You will be confused. Sometimes all at the same time, and more than likely never over what you thought you would, dishes in the sink, what’s for dinner, who makes dinner, sharing of items, and toilet paper.
  11. At least one or you will end up in the emergency room at least once. Consider it a right of passage.
  12. Contrary to what you may be thinking (or what other people are telling you), you aren’t there to change the world. You are however going to make the world a better place and that’s just as important.
  13. Just when you think can handle your position it’ll be time to leave. It’s O.K.

Bonus 14. For communities where men are a minority, which will be most of them, be respectful of their boundaries, especially when it comes to the purchasing of ladies only items. If they don’t want to buy them on their run to the store DO NOT push the issue.

*A similar version of this post was written on August 16, 2012

On The ADA Anniversary

This week is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA or just want to test yourself feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short-term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014