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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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.

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).

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.

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.

 

February: Recap

Do you ever feel like you need another day in the week? That’s how I feel about February. Leap years make me happy because I have 24 more hours to fill before the calendar turns over.

The last 28 days have been close to a blur.

It’s been 28 days of illness and/or injury, and if not either one of those, swim meets.

Doing anything while riding out a virus can be difficult, trying to train though that can be a tricky balance. Do I swim or do I rest? I can’t tell you whether I made the best decisions or not, but I will tell you that next time I decide to enter 3 swim meets three weeks in a row I’ll be sure to have a better training base.

Work was slow this month so while my bank account is a little less full than it would be at this point in the year, I was afforded the time to recover from my various ailments without having to miss out on much, if anything.

I spend the first half of the month thinking March was a week away and the later half of the month thinking I had a few weeks before I had to plan out what’s next. Now March starts tomorrow and all I have to show for it is a bunch of blog posts in various states of completion.

I watched a lot of entertainment related items this month, there’s only so much one can do under the constant haze of Ben@dryl. Unfortunately, a lot of them required subtitles so it was more than I bargained for in terms of the brain power required, on the plus side I retained more Spanish in my six years of study than I could have guessed.

I’ve been looking through boxes of old school papers, like from the 90s old. It’s strange what was considered an accomplishment back then. I have more than one certificate to congratulate me for having a good day in school. And people complain about having to deal with a generation of “snowflakes.” I wonder how that possibly could have started? Could it have been because we started giving out certificates for just getting through the day? (I vote yes)

I still don’t have a clue how my word for the year fits into my life. I’ve given up any means of discerning what it could mean after 2 months of basically journaling my brains out. But there are 307 days to sort something out, wait for the heavens to open, or a lightning bolt to strike my in the head.

Don’t get me wrong, there’s been plenty of “new” this month, but it feels forced, like I keep trying to make something happen that isn’t meant to be.

I’m not going to say that I’m excited to see how the next month unfolds, I haven’t been excited for that kind of thing in who knows how long. However, I hope that next month brings more productivity and peace.

One Word: 2019

I had no idea what my word should be for the year.

Should it go along with words I had chosen in previous years?

Should it be completely independent?

I tried praying about it. I tried thinking about it. I mindlessly surfed the internet on New Year’s Eve.

Nothing.

So, I turned to Jennifer Fulwiler’s Word of The Year generator.

word19

My first reaction was, what the crap.

I’ve already had a lot of “new” in my life, too much if you ask me, or at least too much for the “new” that comes with a pile of negatives for each “new” thing.

I’ve become very tired of the “new,” at least for now.

I was hoping for something more meaningful, something with more direction, something with more “oh of course” factor.

I could have clicked “pick another word” but it would have felt like spitting in the face of fate.

So, I’m stuck with “new.”

I have 334 more days to figure out how “new” fits into my year (or how to make it fit).

I hope this new season of “new” brings more positive newness rather than negative.

One Word (2018): Review

Would you believe that I’d forgotten my word for this year?

Rereading my original post from January wasn’t an eye opener as much as a reality check. I had no idea what was ahead of me this year but if you read it with the benefit of hindsight you may think I was slightly psychic.

Particularly when I said, This time feels less formal than a transition, like taking a deck of cards and throwing it in the air kind of formal (as in there’s no order to it, at all).”

Specifics aren’t that important, especially considering I’m always looking for more topics to write about. So let’s just say this year has given me plenty of reasons to generate content, it’s just a matter of timing before the content gets created.

 However, when I read that I actually wrote,
“I’m not completely lost, but things are more or less wide open in terms of my next steps.
It’s not like I wake up every morning wondering what to do with myself, at least not every morning.”

I had one of those “did I actually write that” moments.

I thought I sounded like a complete idiot, but that’s with the benefit of hindsight, if realizing your idiocy can in fact be a benefit.

I do wake up most mornings wondering what to do with myself. It wasn’t planned, and it’s not ideal but it is what it is. My time may be filling with meetings but that’s about it as far as structure goes. I don’t schedule the meetings, set the agenda, or work out the logistics (at least not yet), so I just have to show up, listen, and maybe put in a cent or two here and there.

Other than that, I wonder what I’m going to do with myself most days.

Given the benefit of hindsight I realize I go all in on things if the stars align. If they don’t then I struggle with focus and personal drive.

It’s there, but I have to be hooked in.

School was an easy thing to get hooked on, once I acclimated, if I wanted a degree, I had to earn it (and boy did I, on both counts).

Competitive swimming was another easy one. When it’s something you’ve wanted to do so long you can’t remember your first thought about it the “buy in” is a given. I’d be at the pool all day everyday if I could. However, being a competitor more nuanced you must train for it. Meaning you can’t just show up and swim. Having changed pools and workout groups I’ve discovered the “buy in” I have doesn’t work in the same way wherever I find myself training.

Then there’s the continuing need to keep building a career for myself. The hook keeps shifting. I need money to live and I need to be passionate about something. Those are two completely different hooks, at least at the moment, and I would like these two hooks to turn into one. If I’m being honest money isn’t always the best hook for me, it works, but in the short term, and being disabled is expensive so packing a bag and venturing off into the unknown like Eat. Pray. Love. or Wild isn’t an option. An Into The Light thing would be cool but I doubt anyone in my family would be down for that, for a variety of reasons.

I knew flux would be a good word for this past year because of the obvious unknowns, what I never factored into the equation when coming up with this word was just how many unknowns would come up in addition to the ones I knew about. My year of flux made for a long and frustrating year, so much so that I can’t wait to put the whole thing behind me.

November: A Review

November, the month when life was supposed to be spaced out. No back to back to back meetings in one day, meaning I’m at risk of falling asleep while on Z00m.

Turns out it doesn’t matter how few meetings I have via Z00m there’s still a good chance I’ll wish I could take a nap during the meeting. It doesn’t matter how interested I am in meeting topics. 20 minutes in and I’m struggling to not zone out.

I’m hoping my systems are just trying to recover from the chaos of the last year

I’m hoping that’s what it is, but the pessimist in me is saying that it’s not that simple.

My life is hardly ever that simple, so I don’t expect one of the hardest years of my life to be any different.

Somehow, I blinked, and the month was over, which has both good and bad points.

The holiday season is in full swing, which is usually a huge stresser for me, but this year I’m seeing it as being closer to the end of the holiday season.

More pessimism indeed.

Thank goodness I plan my gift purchasing early or else I’d just be browsing flash sales on Amaz0n during my restless, pretty-close-to-sleepless nights.

It’s been almost a year since I finished school and I’m thinking about going back, unbelievably. I’m not sure why if I’m being honest. I don’t want to spend all my free time writing papers or trying to find time to fit in reading a few pages of an utterly confusing text. But it gave me structure, guidelines, nonnegotiables, that’s the part I actually miss.

I can’t believe I miss saying, “I can’t. I have a paper to write.”

And then procrastinating on actually writing said paper(s).

I think I got too used to writing that I’ve lost what little social skills I had.

This month has brought an increase in debates and disagreements. I can’t say I regret anything that’s happened because I don’t regret anything I said or did that led to said disagreements. People have differing points of view and that’s OK.

What’s not OK with me and makes me want to keep an increasing distance from people is that people feel that because we don’t agree there must have been some misinterpretation, that something was read wrong, taken too personally, etc. Why can’t people disagree and have all parties involved be OK with it?

The year is coming to an end. I can’t wait for it. I can’t see what’s on the horizon either so things are bound to be interesting.

11 months down, one more to go.

The Return Of The Envelope

I was standing at the admissions desk as NRH filling out paperwork before my first ever PT session as an adult. I wasn’t freaked out about the PT. I’ve done that enough to have an odd comfort level. The paperwork was annoying, but typical, until I got to the “emergency contact” portion. That’s when I freaked out.

Who should be my emergency contact?

Typically it’s my mom, but I had second thoughts. She was 6 hours away if the traffic cooperated. If there was going to be a real emergency that required the informing of someone they should be closer than 6 hours away. I thought a pizza delivery “30 minutes of less” window would be ideal. So I put down my roommate. We barely knew each other at that point & couldn’t think of a single person who I knew would be O.K. with it, without asking first.

“When I was at NRH today I had to give an emergency contact. I listed you. If you’re not O.K. with it I can change it.”

“I’m fine with it. Just let me know where you keep your stuff. I keep an envelope of all my information right here.”

Well that was easy.

Now I just had to put together an envelope:
* Medical history
* Surgical History
* Important Phone Numbers
* Copy Of Insurance Card

I left it in my desk until I graduated. When I moved across the country I told my housemates where they could find my info, if needed, because I put down the house number as my contact (meaning there were at least 3 potential contacts).

Almost 2 months ago I went to urgent care in the worst pain of my life; because I needed another reason to put off having children, if at all. I sat in the waiting room while my mom filled out my forms trying not to gag & praying I’d blackout, since that seemed to be the only potential relief.

I was sent to the ER where I sat for the equivalent of forever, before I had to answer all their dumb questions AGAIN. I wish I had my envelope back, more than one actually.

“Can we hurry this up please?!?!?! I’m in a lot of pain here & I’m gonna barf.”

(Painfully unhelpful response I won’t repeat)

Twelve hours later I was being admitted to a medical unit because my test results were “inconclusive.” Guess what happens when you get admitted on a unit? You have to answer the same questions all over again, and this is after 24+ hours of no food, no sleep, a full day of tests, and lots of M0rphine & Z0fran. I was literally falling asleep when the attending came to do her new admission rounds, because at that point you really care what a hospitalist is/does.

The conclusion of all the “in-conclusion” was that I probably passed a kidney stone & it wasn’t my appendix. The evidence being one swollen kidney since no one was able to find the kidney stone or appendix.

My conclusion? Time to bring back the envelope.

I had a follow up with an urologist in order to attempt to put this whole thing to rest since my goal is to never repeat this experience. The first was to tell me that it does in fact look like I passed the stone & to give them more details about my time in the Big House. The second was to go through everything again with the urologist after an ultrasound.

I’m “back to normal.” No restrictions, since no one seems to be able to even guess how this all happened. It could happen again, or not. My appendix is still missing however.

*A similar version of this post was written on August 21, 2012