April: The Recap

I feel like my brain in on a loop similar to Groundhog Day, same thing, just a different day, with the exception that April is not March so I’m back to monthly recaps rather than daily posts.

I was wondering what would happen after making myself write for a month straight, whether it would spark something or just beat what little creativity I had left to death.

It turns out neither one happened, but I’m still sorting out what I’m doing here, and even if I belong here at all.

I used to love blogging. I couldn’t get enough of it whether it be writing or reading blog posts. I still like it these days, but I don’t think it would bother me if some other medium were to take over, whether I would partake in a new medium would be a wait and see type of deal.

A few months ago, as recently as February in fact, I didn’t think I had anything left to say; if I did someone else usually put thoughts similar to my own out on the internet before I could get the words through my fingertips.

It turns out I do have stuff to say, but blogging may not be the best place for it. A podcast or vlog could be a possibility, if I had any interest in the production value either of those would require, which I don’t. In fact, I’m pretty sure I would have a Y0uTube channel by now if I cared enough to learn about the production aspects of it. I do like production, but as soon as editing comes into play, I check out. It’s not for me and I don’t want to look for someone to do it for me, but if someone were to offer, I wouldn’t automatically say no.

So, I’ll continue to write. It just won’t be here, unless it belongs here.

Not one, but two positions I applied for a less than a year ago have reopened. I’m wondering if I should apply again or take the first no as a final no. As I sit here now looking at the exact same requirements I did months ago I can’t say I can see why I didn’t get an offer but I can tell you so much has changed for me, at least mentally, that I’m looking at the same thing fairly differently. However, my brain is still screaming “don’t reapply” because it just seems like a weird thing to do.

I’m wondering, again, what the perfect position would look like for me.

It’s not what I thought it would be if you asked me what it would be when I graduated from high school, or college, or at the end of my volunteer contract.

It isn’t even what I thought it would be at the start of this year, if I’m being completely honest.

It’s not like I don’t have anything in the works. It’s the opposite. I have a lot going on, but it’s all on a timeline that has varying endpoints. Meaning at some point there’s a high likelihood that I’ll have little to nothing to fill my days with, again.

So, I’m doing what every other sane person does, or would do, in my situation. Keep looking for more work, whether it be something else on a timeline or something more long term. It’s quite an experience, one that I keep getting thrown into, and it’s not always positive.

Normally I would take every ouch of bad news and hang onto it for a while. It can take me a few days to “level off,” normally.

But lately?

Every piece of information that is less than 100% awesome I just think, this is taking me to something greater, and I’m totally fine with that, at least right now, in this moment.

It wasn’t easy getting to this place, and I don’t think this feeling will last forever, but I’m going to take full advantage of it while I have it.

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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)

Cerebral Palsy In The Future

This topic makes me a little nervous, although the title implies some level of boldness, so let’s hope that’s the direction in which this is going to go.

Cerebral Palsy in the future, what will it look like?

Selfishly I hope it’s still around in 20, 30, 40, 50, or more years from now.

Why?

Because I don’t see the need for a cure.

Living with Cerebral Palsy isn’t a walk in the park by any means but I rarely, as in almost never, wish I didn’t have Cerebral Palsy.

I’m not saying that some cases of CP shouldn’t be prevented if there’s a direct case and effect for it, like an infection that then results in injury that results in a diagnosis of CP.

What I’m saying is I don’t think all Cerebral Palsy should be eradicated.

Cerebral Palsy is a disability not a disease that needs to be treated, unlike something like polio, for example.

I don’t see CP in itself a problem, the comorbidities that can accompany it are a different story, the problem with living with CP is more about faults in the healthcare system rather than the diagnosis itself, from my point of view.

I wish more doctors knew about Cerebral Palsy and were willing to have people with CP as their patients. I want to get the same quality of medical care as my able-bodied peers. I don’t want to keep seeing the glazed over eyes and quizzical faces when I go over my medical history, just because I have the most common motor disability in children.

I would rather curing efforts go towards something like epilepsy, which can improve the lives of many people with and without CP.

I also wish there were more studies on CP past the point of the early teen years. I wish I knew more of how my life could look like 10 or 20 years from now. All this effort goes into the pre-adult years but not what happens after. I’ve said it before, and I’ll say it again. Children with CP grow up and become adults with CP so we need to know what we may be facing in the future.

The lack of treatments for adults is another issue that’s probably too complicated to go into here and now, especially with the way things are progressing in medicine at this point in time.

Plus, eradicating something like CP feels like taking a step towards designer babies in a sense. I’m not sure why I can’t put many words to why I feel that way, but it is something I have thought about.

I hope Cerebral Palsy is still around 20, 30, 40, 50, or more years from now. The one thing I do hope for CP in the future is that we have better education and care by the healthcare system that often leaves us looking for somewhere to go or feeling like there’s no place for us.

I don’t think we need to be fixed but we do need to be treated better than we are now.

Chase Dreams, Change Dreams

When I was younger, I wanted to be an Olympic Swimmer. It never occurred to me that it was highly unlikely because I was slower than everyone in the pool every single time I was in a pool. I also had no idea the Paralympics existed, even then I think I would’ve still shot for the Olympics.

I quit swimming in my early teens, like most girls who stop showing an interest in sports, but I still watched it whenever I found it on TV.

I didn’t want to quit swimming but there only so much letdown a person can take, never mind a hormonal teenager, so I quit anyway and watched from the sidelines.

What I didn’t realize until I started swimming again is that it’s OK for to chase your dreams even when they’ve changed, to whatever degree.

It would have been awesome to make an Olympic (or Paralympic) team but it’s just as cool to be able to swim as well as I do at my age, which isn’t old overall, but up there for a competitive swimmer.

Plus, I now have actual goals, times, standards; things that are measurable, rather than a huge goal with no road map to get there (and people to help me get there, and sometimes they draw the map).

That may be the best part.

I’ve heard and read many stories about parents who feel like everything changed as soon as their child received a diagnosis. I have no personal experience with it, but I can guess what that might be like, but I want to push back on the idea that everything must change based on a diagnosis given on one day.

Life, regardless of disability or ability forces us to change.

How many of you have the dream job they envisioned when they were 5 or 6?

My guess is not many.

There’s nothing wrong with that. Life happens and you changed.

Please don’t put expectations on your child’s life before they’re born (or soon after).

Your life changes as soon as you become a parent, so I’ve been told, so it’s OK if your idea of the child you will parent changes too, because it probably will.

You are part of your child’s life, especially in the beginning. But eventually they’ll have their own thoughts and dreams for the future and you’ll probably have to negotiate how much of a say you’ll be able to have in their life, especially considering how much CP impacts their daily life.

One day does not determine whether or not dreams die or live to see another day, especially when it comes to the dreams of (or for) a disabled child. If one day does become the one determining factor then you’re probably selling yourself, and your child, short.

It’s OK to have dreams and to chase them with all you have in your control but it’s also OK to change your dreams and chase those just as intensely.

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 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?

*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.

Cerebral Palsy: Movies & TV

Because I compiled a list of books on Cerebral Palsy, and was somewhat happily surprised, I thought I’d see what was out there in terms of film and TV shows. The search wasn’t as successful as the search for books was, not even close.

There are more than a few reasons why I deemed this venture “less than successful.”
1) Selection is limited, or maybe it’s just not that accessible by easy search terms.
2) I wasn’t always able to determine whether or not the actor was “cripping up or not” without the help of the internet.
3) Inspiration porn.
4) Lack of actual story.
5) Heavy on documentaries.
6) Just plain bad production value.

I didn’t realize that I was going to be so disappointed by the lack of material until I watched a majority of what was available to me. I think it’s because I was so surprised by the book search, I was hoping for similar results.

For the record I typed in “Cerebral Palsy” or “Cerebral Palsy movies” into various outlets and saw what came up, some addressed CP as a direct topic some just had a borderline reference.

Now I’ve talked about disability in entertainment before, but I don’t think I’ve done so directly here so I’ll do that now.

There’s always a big debate over whether or not “cripping up” (an able-bodied person playing disabled) should be acceptable. For a long time, I said the best actor should get the job regardless, however because of the lack of diversity in entertainment I now think “cripping up” is not acceptable.

That’s why I think shows like Speechless & Switched At Birth are so important and a step in the right direction.

But they aren’t perfect.

I don’t think every episode should be centered around disability but there should be some acknowledgment of when a disabled person’s life deviates from the able bodied, like going through an airport, for example.

I also don’t think you should put a disabled person in a role just because. There needs to be a reason for them to be there other than “we need a disabled person.” They should be characters, not props.

Do I really need to do into inspiration porn? There are articles and such all over the internet you don’t need my input other than, it must be stopped.

There are a few documentaries out there on people with CP but many of those aren’t of the best quality or turn into inspiration porn.

So nothing is perfect, and this venture just proves it.

I’ll end my complaining with a few recommendations (again none are perfect, but these top the list of “least offensive”):
The Long Green Line
Margarita With A Straw
Music Within

Difference Is OK

Each case of Cerebral Palsy is different but there always seems to be “fads” that go around, as with anything; whether it be SDR or some other surgical option to Baclofen and Botox.

I’m going to say something that’s not that popular.

What works for one child may not work for your child and that’s OK.

It’s not some kind of medical competition to see who gets the most out of whatever treatment. I know it can feel like it, because it doesn’t stop once your child grows up.

I’ll give you an example, I was late to the party when it came to Botox injections. I didn’t like the idea that I’d have to keep getting them every 6-ish months or so. Everyone tried to talk me into getting them, so much so that my expectations were high, but manageable. Botox doesn’t work for me in the traditional sense, which is both good and bad.

I’m not on any type of regular schedule for Botox injections like most people with Cerebral Palsy who get them, but I get them at least once a year when my muscles get so tight, I don’t have any other options. It’s not the magic bullet that it can be for some people, but it does help me get back to my normal.

Another example is Baclofen, it’s one of the worst medications I’ve ever been on, in my opinion. I did a basic 2-week trial on the lowest dose possible and it ended up being one of the longest periods of my life. Granted it isn’t nearly as bad as some other have had it, but it was an experience I kind of wish I never had. Like the Botox, it didn’t work the way we had hoped.

Now, the one thing that makes my experience with Baclofen different than my experience with Botox is that it was more like a “let’s see what happens” venture. I was warned about the side effects and that it was going to be a process before it would actually work, if it did.

It did work, but too well, so in a sense it didn’t work either. My legs felt more “normal” but the rest of me was one big pile of mush. So that experiment ended quickly but the withdrawal was the worst part. Because yes you can go through withdrawal after just two weeks.

Now that I’ve given you two bad examples, I should give you a good example, trigger point injections work really well for me. Think of it like Botox injections without the Botox. I’m also partial to Myofascial Release. So, I try to get both of those as often as I can, because it’s cheaper than Botox and doesn’t always require insurance.

What am I trying to say with all of this?

Get as much information, both medical and personal about treatment options but manage your expectations. Just because it worked for another child (or adult) that doesn’t mean it will have the same outcome for your child (or you).

Cerebral Palsy is unique to the individual, the treatment(s) should be too.

Cerebral Palsy & Aging In Community

This is probably going to be more like a “patchwork post” so bear with me this could end up going anywhere.

Having Cerebral Palsy can be a lonely experience, especially if you don’t have any friends with CP or know anyone older than you who has CP. Things have changed thanks to social media but there are times when that’s not enough.

I didn’t have any serious friendships with people with CP until my 20s but I knew of people with CP so that was enough for me, until I got older. I’m not sure what changed but something tells me it has to do with post college life (and it seems like it doesn’t matter what your ability/disability is).

Your 20s are lonelier than you expect. They’re glamorized in culture as the time of your life. The truth is, when you leave college, you leave the tightest, largest concentration of people your age. You must fight for community. Seek it out. Be brave. Be deliberate. #GradAdvice

— Jon Acuff (@JonAcuff) March 14, 2019

I had a great group of friends in college, especially during the second try, but they were always down the hall, in class, or in the same social circle. The majority of them are/were able-bodied and the fact that I had CP wasn’t really high on the list of topics.

But as our careers as undergrads were coming to an end we were warned, and I should have listened, like even a little.

Once I graduated my bubble was gone, I had to look for my community. I couldn’t just wander down the hall or into the dining hall and interact with people who I knew and knew me. I had to work for it (and I still do), add in introversion and it’s a tall order.

Life after college is where things really started to be different, almost all of my able-bodied friends found “a place to land” whether it be grad school, full time jobs, or ministry. But I moved back home, the last place I wanted to be, and tried to start my life after college.

I never thought of networking my way through college, like some do, and didn’t even consider how being disabled would factor into my future and how networking may have helped (and in all honestly, I don’t think anyone else ever brought it up either).

So, I would sit in front of my computer for hours on end seeking out community (and a job). I did this for two reasons, 1) social media was picking up steam and 2) I didn’t actually want to put forth the effort to go out and meet people face to face, again introvert.

I found a community I had been ignoring because of the internet but I’ve still lost the immediacy of community that I had in college (and by extension my 20s). It’s a “six of one, half dozen of the other” situation, but it doesn’t have to be that way for everyone.

I don’t regret anything I’ve done (or not done) in my life but if I had to give any advice to someone else who can identify with some portion of my life, I have to say I agree with the advice that got my wheels turning when I thought to write about this.

You have to put more effort into what you want to maintain once your environment changes, social bubbles are great, but they don’t last forever; lay the groundwork when and where you can before it all poofs away.