August: The Recap

It’s difficult to know what to say about this past month. I’m (still) trying to rehab my shoulder. I know it could be taking longer than it is, but it still seems too long. I’m trying to take things slowly, but I’ve learned firsthand the double-edged sword of rehabbing as an athlete. Being goal orientated isn’t the problem; being patient and taking the time it needs to take to reach goals successfully is the problem.

I was out of the pool for a month. It went faster than I thought but it was still a long time away. I’m slowly working up to what will hopefully be full workouts sooner rather than later.

I had planned on staying away from the gym too, that is until my legs looked like they were having episodes of Clonus, at least to the untrained eye. I never thought I’d look forward to “leg day” but here we are.

Since my schedule has been cleared (basically obliterated) it’s given me more time to do other things.

And by other things I mean not leave the house and toll the internet for anything that pops into my head, which ends up being a lot of stream of conscious thinking.

I’ve been able to really look at the content that’s out there. A lot of it is great. A lot of it is a complete dumpster fire.

A while ago I wondered if I was screaming into the void known as the internet. Now I’m seeing a lot of people screaming, and it’s not into a void, it’s at other people.

While I’m enjoying countless Tw!tter threads and the exchanges happening (good, bad, and indifferent) I’m mostly enjoying them as a spectator. I want nothing to do with it as a participant. I have no desire to defend or deflect anything on social media.

It got me thinking, if this is the nature of social media now, do I have a place out there?

Of course, everyone has a place online, and if there isn’t one, you can make one for yourself. But that doesn’t mean you’ll get noticed or be accepted by others.

I’m at this crossroads of my digital life. There are plenty of people out there doing what I want to do, and I support them as much as I can, because they express themselves better than I ever could. Add into that that I’m finding social media is causing me anxiety and my lack of desire to engage in dialogue in a “public square.”

I’m finding more enjoyment in being a spectator than being an active participant, and that’s just fine with me.

I’m hoping once I get back to a more normal schedule things will just fall into place. If it doesn’t, I’ll figure it out. The internet isn’t going anywhere and it’s not like you can go “off grid” that easily these days.

Other that, Mister Lincoln, the play was great……

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)

Poor Fortunate Souls

Although Cerebral Palsy is the most common motor disability among children (who then become adults) it’s pretty common to hear stories of how having CP makes someone or a family feel lonely. I’d be lying if I said I haven’t experienced it myself

I’ve realized something in these last few weeks. There’s no reason for anyone effected by CP to feel alone, there are people on every social network available to talk to, there are books with medical knowledge and personal stories to draw from.

I know that living with CP could be better, and that it’s getting better, but it could also be a lot worse.

I’m not trying to say that there won’t be times when loneliness won’t occur but people with CP aren’t like some people who have disabilities that make them 1 of 10 people in the world today.

It can take some effort to get to see a specialist, like a long car ride or maybe a flight, but it’s not like we have to fly more than half way around the world to see the one doctor who specializes in your disability and potential it’s complications.

But that’s another kind of loneliness one has to deal with, the medical loneliness that comes with being so rare, even when you’re not.

It’s strange to think that with all that we have at our fingertips these days that we still feel so lonely, that no one else can understand how we feel because we have CP.

The Cerebral Palsy community has its issues, which community doesn’t, but it’s not nearly as bad as it could be. We’re not necessarily a tight knit group but we are a fairly large group so it should be that hard to find someone else who has CP that you can at least try to form a relationship with.

I hope that in loneliness people do something similar to what I (and so many others) have done and seek out community. Look at the blogs, F@cebook pages, Tw!tter profiles, and Inst@gram accounts.

Make connections.

Find your tribe.

Read a few books by people with CP.

Watch a movie about someone with CP.

Be inspired.

Start a journey.

Carve a path.

Lead the way.

Having Cerebral Palsy can make you feel lonely for a variety of reasons but if you try to take an objective look around you will probably see how fortunate you are.

Cerebral Palsy: On Instagram

Inst@gram is the one platform I engage in I can’t keep organized at all, so bear with me. Because this is more of a hunt and peck venture.

@johnquinnspeaker

@adrianamallozzi

@cerebralpalsystrong

@traceytrousdell

@handicapthis

@birdonthestreet

@allison.cardwell

@yourcpf

@frompatienttopt

@mcarta7

@robynlambird

@fifiandmo

@sam_runs

@_watch_me_win

@cortney_jordan

@stevenmalinoski

@t_malone3

@tajias.journey

@cerebral_palsy_bmx_rider

@stephthehammer

@ptwithcp

@theablefables

@eyelinerandempowerment

@notorious_srg

@kreationsbykittles

(once again this is only a partial list)

Back To Basics

I’ve covered these next few questions before, some more than others, but I wanted to do it again because 1) I was asked and 2) it’s always good to go back to basics.

CaraQs1

What is Cerebral Palsy?
Cerebral Palsy is “a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.” (Hat tip to Wikipedia)

Is it something you’re born with?
Most cases of Cerebral Palsy are congenital, meaning it happens during pregnancy, labor or delivery but some can be acquired during the first few months of life.

Does it show up as you develop from a baby to toddler and so on?
There’s no one size fits all testing for it but signs of it often show up in a baby and more signs present themselves through toddlerhood. Typically, it’s diagnosed in the first two years of life, although a rare few get diagnosed as pre-teens.

Are their different forms of it/does it manifest differently person to person?
There are 4 main types of CP: Spastic (the most common), Dyskinetic, Hypotonic, and Ataxic or it can be mixed (meaning having more than one type. It can affect one limb, usually an arm (monoplegia), one side of the body (hemiplegia), one half of the body, legs or arms, (diplegia), three limbs (triplegia), or all four limbs (quadriplegia). It effects each person differently, meaning no two people with CP are affected in the same way.

Is it more prevalent in one demographic vs another?
It is more common in twins (triplets, etc.) than singletons. It is also more common in Blacks than Whites and Hispanics, according to the CDC. It is more common in lower income areas and poorer countries as well.

Does gender play a part?
CP is more common in boys than in girls, according to the CDC.

Have there been any major scientific advances in recent years regarding diagnosis or longevity (or anything in between)?
I’m going to say it depends on who you ask to answer this question. There were plenty of treatments that were common place, 10, 20, 30 years ago that aren’t used anymore, while some are making a comeback. There is a lot of research going on now about improving medical care for people with CP as they move through the lifespan.

Is there limited life expectancy?
From CP itself, no. However, it is fairly common that people with CP have other medical conditions that could shorten one’s lifespan.

If not now, was there ever?
It’s difficult to find a clear answer to this one but I’m going to say that there probably used to be a shorter lifespan given the history of medicine and healthcare systems. Lifespans are longer than they were 20, 30, 40, years ago thanks to medical advancement for people with and without chronic medical conditions (a good example is Cystic Fibrosis) so I’m going to assume it’s the same for people with CP.

CaraQs2.jpg

When did Cerebral Palsy first get a name and when was it discovered?
Cerebral Palsy was first referred to as Little’s Disease in the mid-1800s. It became known as Cerebral Palsy in the late 1800s. It is believed that the first evidence of Cerebral Palsy dates back to ancient civilizations, Greeks, Romans, Egyptians, etc.

How does it affect one’s everyday life?
It depends on the person and it depends on how they measure the effects on their everyday life.

Does everyone with CP suffer massive amounts of pain?
Chronic pain is a common symptom, but not necessarily massive amounts of pain.

How does one cope with it?
It depends on the person, it’s not uncommon to manage pain with medication and physical therapy/exercise.

Are there alternative/ not traditional therapies like acupuncture, herbs, etc?
Yes. There are plenty of alternatives (most if not all) not covered by insurance. However, I cannot personally speak to their effectiveness, or lack of.

Have persons with CP used medical marijuana to aid with symptoms?
I do not know anyone personally, but I have heard of people who have CP who use it, although I’m not sure if it’s to treat effects of CP or other comorbidities (like epilepsy) that they may have.

A Question About Questions

Another good question from Arleen:

CPQuestion#2'19

This answer is coming from a completely personal point of view, because this isn’t something I’m comfortable speaking for everyone.

What’s appropriate?

It depends on the situation.

What’s not appropriate?

It depends who’s asking the question.

A good rule of thumb is if you wouldn’t ask an able-bodied person don’t ask the disabled person (much like offering help).

I don’t mind talking about my Cerebral Palsy, or living with a disability in general, I make a substantial portion of my annual income doing it so it would be hypocritical to say I don’t enjoy it on some level.

However.

Timing.

Is.

Everything.

If I’m standing (really sitting) in a room full of people giving a talk and there’s a Q&A there’s a pretty good chance that nothing is off limits.

All in the name of educating the next generation Afterall.

If we’re friends, there’s a good chance that the limits of acceptability eb and flow. It also depends on the environment and topic of conversation.

If you’re a friend of a friend, ask them, the mutual friend, what they think about your asking the question. If they’re anything like my close circle of friends they’ll set you straight, if necessary, and quickly.

If I’m out at the store (for example), because most sought after “teachable moments” happen while I’m out doing the most mundane things.

Do Not:
-Tell me you’re praying for me.
-Pray over me.
-Tell me someday Jesus will come and end my suffering.
-Verbalize your wish for me to be cured.
-Tell me I’m too pretty to be disabled.
-Ask me if I can have sex.
-Ask me how I have sex.
-Ask me if I ever get upset that I’ll never get married.
-Ask me how I’ll have children.
-Question my fertility.
-Tell someone I’m with that they’re “being so good” to me.
-Tell me you don’t know how I manage to have such a positive attitude.
-Ask me how I manage to have a positive attitude given my circumstances.
-Ask me if I’ve ever been in a relationship.
-Ask me how I manage to be “so cute.”
-Tell me about some miracle supplement that will help my condition.
-Assume anyone I’m with is a healthcare provider, nurse, parent, etc.
-Ask me how my disability affects me on a daily basis, I need more detail oriented question.
-Ask me about the state of my mental health.
-Hand me prayer cards.
-Tell me I should see (insert name of some spiritual healer here).
-Tell me that you know how I feel because you broke your leg in 2nd grade.
-Ask me if I’ve ever been to (insert some spiritual pilgrimage site).
-Suggest I should go to (insert some spiritual pilgrimage site).
-Ask me how I go to the bathroom.
-Tell me you don’t mind if I need your assistance with some sort of personal care need.
-Ask how fast I can “go in that thing.” It’s a wheelchair not a racecar.
-Tell me about someone you know with a disability.
-Ask me if I know (insert famous disabled person). We don’t all know each other.
-Provide assistance without asking for permission. That’s assault.
-Ask me about the Americans With Disabilities Act.
-Ask my feelings about a particular political issue.
-Ask what happened to me.

Basically, use your common sense, if you wouldn’t want to be asked a question in public than don’t ask that question to someone else.

That Thing About The Road To Hell

The first question I’ve been asked comes from Arleen.

CPquestion#119

I’m going to say something that people may seem mean.

If you aren’t asked, don’t help.

I’ve written before about the issues people fact when asking for assistance, but this is going to be more practical advice (hopefully).

I know that there’s a common assumption that random acts of kindness are dying out but I’m going to push back on that.

It depends on your definition of “random acts of kindness.”

A good general rule for whether or not you should offer to help someone is, would you make the same offer if they weren’t disabled?

Meaning, is your primary motivation for offering help is because the person is disabled?

If your answer to the first question is “no” and/or the answer to your second question is “yes,” then don’t offer.

People with disabilities are more like the able-bodied than they are different. Also, people with disabilities don’t exist to make you feel better about yourself. Don’t project your feelings onto them either. You don’t know what it’s like to have people come up to you on a regular basis, sometimes multiple times a day, asking you questions more involved and personal than “do you need help?”

We want to be able to go about our day without intrusion, just like anyone else.

If you do ask someone if they need help and they say “no” they mean “no.” It’s not personal.

But it is personal.

It’s not personal in the sense that it’s against you.

It’s personal in the sense that people with disabilities sometimes have to ask for help on a daily basis from a variety of people. So being able to do something on our own can be liberating, to have someone assume we need help can come off as insulting.

Just because we can’t complete a task in the same manner doesn’t mean it can’t be done, it’s just done differently.

If someone does accept an offer of help follow up with, “how can I help you?”

Not all help is helpful.

You could hurt someone by offering to help without asking for permission and how to go about helping.

It seems unbelievable if it’s never happened to you. When it has it’s often the first thing that comes to mind when someone asks to help, especially if you don’t know the person.

Speaking from personal experience, I’ve hit my head, pulled muscles in my back, thought I dislocated my shoulder(s), I’ve fallen, been dropped, and those are the more major incidences which don’t include the minor bumps, bruises, and scraps that often occur.

There’s a popular saying, “the road to hell is paved with good intentions,” please don’t let your good intentions lead someone else down their own road of personal hell.

So in short:
-Just because someone is doing something that looks difficult doesn’t mean it is.
-No means no.
-Don’t just ask if you can help but how you can help.

 

Cerebral Palsy Awareness Month: 2019

If you follow me on social media you can probably guess what I’m going to say because I’ve been posting annoying Inst@gram Stories and tweets on Tw!tter for the past month.

Today is the start of Cerebral Palsy Awareness month.

I’ve done this before, and I want to do it again.

I’m going to write a series of posts pertaining to Cerebral Palsy, but I need your help.

What do you want to know?

What questions do you have?

What have you heard, that could be fact or fiction?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

What do you wish other people knew about Cerebral Palsy?

What would you like to share about living (and/or working) with Cerebral Palsy?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

I’m open to feedback for the entire month, so if you can’t think of anything right now never fear there’s still 20-ish days that need material (just contact me).

September: A Recap

This is going to be an attempt at a recap of the past 30+ days. I say attempt because I’ll probably forget something or get the order of events wrong.

Blogging: I haven’t done much, obviously. I intended to make some sort of cutback, but I never made a solid plan. I would sit down to write and not finish anything, and then it just became more natural to not write anything. I needed a break more than I thought I did. I’m not sure if it will continue or not but I’m pretty sure I’ll have peace no matter what conclusion I come to (or stumble towards). I have no idea how I kept up a blogging schedule with full work and school schedules.

Social Media: Every morning I (usually) lay in bed while checking email and scrolling social media. One day I found myself wondering why I followed some people because I found myself on an emotional roller-coaster that I had no intention or even interest in being on, yet there I was. The end result was going through all of the people I follow and unfollowing a good number. I can’t say I feel better, but things feel more manageable.

Books: I’m enjoying making use of public resources, and my bank account appears to be thanking me for it. I have slowed down my reading consumption but I’m still going at a somewhat steady pace. After checking out the wrong book, not once but twice, keeping up to date on Good Reads has become somewhat essential.

Clothing: I have a dwindling wardrobe, on purpose. I was looking for a pair of pants in my closet, and similar to what happened with my social media accounts, I ended up donating half of the pants I owned. I don’t know why I had so many pants because I think I only wear 3-4 pairs on a regular basis. The same thing happened with my sweaters soon after. I’m hoping this trend occurs with the rest of my possessions. Why did I feel I needed so much, because I clearly don’t need most of what I have even after a purge?

Ministry (or whatever you want to call it): I’m still working on my capstone project, even though it’s not really a project anymore. It hasn’t gained the traction I had hoped for and granted I haven’t been able to bring what I had in my head to the web, but it doesn’t feel right to just let it go.

Christmas: I have a fair amount of my shopping done. I don’t claim to be one of the “Christmas crazies” that enjoy starting the countdown to the big day in July, but I find it much easier to have a “shop as you go” approach to gift giving, rather than scrambling for the perfect gift closer to a deadline dictated by a calendar.

Work & Career: This could probably be two separate things but I’m making it one. I’m on the job hunt still writing cover letters and sending out my resume. Things are happening slowly but surely, and that’s fine with me. I made the decision to stop accepting speaking and educational engagements that don’t offer some sort of compensation. I can’t live solely off warm fuzzies an thinking I’m making the world a better place, so I needed to stop doing it.

Friends: They’re all off being amazing and doing amazing things, like this one, so I’m watching things happen wherever I go.

Podcasting: I’m considering a return of sorts so stay tuned, if you’re interested. I am listening to more podcasts, most notably The Catholic Family

Swimming & Other Physical Pursuits: The short of it is, same coach different environment. It’s been an adjustment, and a bigger one than I bargained for so I’m trying different things, for the sake of motivation, until something clicks. I have no idea how professional athletes change coaches and or environments semi-often and seem to not miss a beat.

So that was September. How was your month? Did I miss anything that I should have covered?

Grad School: The 1st Summer After

It’s the first summer of my post-post-grad life. The summer of dreamed of for years has come and is almost over. No, I’m not going back to school, at least not yet. Things haven’t gone how I thought they would. I’d be lying if I didn’t say keeping up this blog is getting harder and hard to do, not because of lack of time, but lack of motivation.

I thought not having school would free my mind, give me the free time I missed, etc.

Lucille Ball was quoted as saying, If you want something done, ask a busy person to do it. The more things you do, the more you can do.”

I think there’s some truth to this, although not the total truth.

I feel like I could get more done in a day then than I can now, even if I can set my own schedule more often these days.

If you follow me on Inst@gram or Tw!tter you can probably guess what I’ve been doing with my self-controlled schedule.

Perhaps getting back into everyday life is more than I bargained for. Perhaps my brain just needs to rejuvenate and heal, yes heal.

Maybe having more to do meant that I had more to write about.

Whatever the reasoning it’s caused me to reevaluate my blogging and social media practices, again.

I’ve been trying to put together my post-post-grad life, because it’s not something that just falls into your lap, unless you’re incredibly lucky, it’s something that needs to be built, and then crafted.

Things have been changing in my life and it only makes sense that other things will follow. It doesn’t matter what I thought the long game would be when I have to take into consideration what the long game looks like it is now, rather than what I wish the long game looked like.