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

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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

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

The Matter Of Discernment

The matter of discernment puzzles me.

I was 20 before I even heard the word discernment, and then I heard quite regularly at that. It didn’t take long before “discernment” sound like the magic word for some secret society. It annoyed me to no end for a long time.

I’m not much closer to discovering what discernment really means ten years later. Although I have been told on numerous occasions that it’s not a “get out of jail free card,” so I should really stop treating it like one.

Yeah, I’ll get right on that.

It’s one of those necessary evils of life, especially if you’re Catholic, if you ask me.

There seems to be an implication that one cannot possibly find their vocation without some sort of discernment.

While this is more or less true I don’t think it can be expressed in such a cut and dry fashion if people are really going to understand discernment.

I understand that there’s no definite “right” or “wrong” way to discern.

However I’m not sure I’ve ever done it “right,” or at least the best way for me.

I have, however, done what everyone else has done.

I’ve gotten up for the sunrise masses and before class rosaries (mostly).

Gone to prayer groups and Bible studies.

Rarely ever, and I mean ever, missed fellowship or adoration.

Made every retreat possible, even a yearlong SEEL retreat that included spiritual direction.

I even joined a discernment group (albeit for other reasons, at least initially).

And they’ve had great success, although a different definition of success than the secular.

I have the dubious distinction of being a religious sister’s prayer partner for a few months during our junior year (during her final pre-nun years). Just to give you an example. I like to tell people that I helped facilitate her discernment process, because that’s how things happened in my head.

It took me a while to really get that discernment has no timetable. Although it eats on my nerves when people say they’re discerning something and you know for a fact that they’ve been doing it for years. Talk about using discernment as a “get out of jail free” card.

Let’s not even talk about the people who are so certain of their plan because they’ve discerned it within an inch of their lives and then after a day (or what feels like a day) they do a complete change of direction.

Because the mysteries of discernment go both ways, and every which way.

Discernment’s never been my thing, at least not in the same way swimming or encountering unpleasant people seem to be my things.

It would be awesome if God would just speak very loudly and very clearly after a period of prayer and self-reflection.

Unfortunately, discernment doesn’t work like that either, at least not for most people.

Discernment is important. It’s also becoming a lost art in some aspects. Just don’t ask me for advice on it, because I have no idea what I’m doing.

*A similar version of this post was written on August 6, 2014

Money For Nothing & Jobs For Free

Job searching isn’t fun. In fact, looking for a job should count as a job, speaking as someone who’s in the thick of it yet again. It can be even more daunting if you’re disabled, especially if you know the statistics surrounding employment/unemployment of the disabled. You want to be one that defies the statistics, not become in included in the statistics.

I’ve done everything I can think of at various points of time in job searching. I’ve gone it alone. I’ve networked. I’ve sought employment help from disability related organizations. I’ve read nearly every article I’ve come across. Every avenue has come with a different level of success (or failure) which I won’t go into, because it could basically be a book in itself.

The one thing everyone, oddly, seems to come to an agreement on is the value of volunteering. As someone who started their resume with various volunteer positions I’d be a hypocrite if I said they didn’t have some value. However you can’t pay bills with volunteer positions alone, and there are times when they become exploitive (especially for minority populations).

 

I don’t mind taking a free gig, but I won’t make a habit of it (and I don’t think I’m in the minority on this one). There also needs to be a self-determined payoff in order for me to take on a gig for free, but that’s up to me and no one else.

I have turned down more engagements than I’ve accepted because there isn’t some sort of return. I know it probably sounds selfish to people, but time is valuable, no matter your circumstances. I wish more people would recognize that no matter their own circumstances, but especially those of any minority.

Everyone has their own priorities as to what’s acceptable or not, but I don’t think we can solely blame organizations for treating people like marketing props. People with disabilities in particular need to take some ownership over it as well.

If you want to volunteer that’s fine but know that it may not get you where you think, no matter what you’ve been promised. There’s a reason why the saying, “why buy the cow when you can get the milk for free,” caught on and still applies to many situations today. Why would anyone pay for something they can get for free?

If you want to get compensated for whatever service (read: expertise) you can provide then you should make that clear, along with what you must have verses what you are willing to negotiate on. It’s OK to walk away. It’s not OK to be taken advantage of, no matter how positive and convincing people can be.

Everyone needs to recognize their value and stick to it if they want anyone else to see that they have value. However, there’s also the possible fact that if you pass up an opportunity because of lack of compensation someone else won’t pass up the opportunity. I don’t say that in any other way than to make people aware that it can and does happen.

I say that persons with disabilities are also partly to blame because so many of us fall for the idea that we have no other options than to take on work for free.

It is not true.

More importantly, it isn’t fair.

We can’t complain that we aren’t being treated as equals if we act like we are equals.

I think there’s also a misconception that everyone with a disability gets money from the government therefore they can afford to take on free labor without economic pressure. This is not true. Not to mention that getting government assistance doesn’t mean you can take any job for added income, if you make too much money you lose your assistance. It’s a catch 22 that no one likes (or wants to be in).

We don’t get money for “nothing” so we shouldn’t take jobs for “free.”

People with disabilities, especially those with Cerebral Palsy, are not props. We are people. We shouldn’t feel obligated to take labor for free, for any reason. Organizations need to stop making those offers and the disability community should stop taking them.

 

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically, this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

fr-jack-greeting-card

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on September 28, 2016

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically, this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

fr-jack-greeting-card

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on October 8, 2012, October 22, 2014, September 30, 2015

Asset Or Barrier?

Not too long after graduation I went to New York City for an interview. It was one of the hottest days, if not the hottest, I’ve ever spent in the city, ever. Typically, I would’ve stayed home blasting the air conditioning, but I had ulterior motive.

I wanted a position.

I found a small volunteer program that I wanted to be a part of and they had invited me to the city for an interview. I decided to ask my best friend to come with me and make a day out of the whole thing, because spending 4 hours on a train for a 1-hour interview didn’t make much sense.

My interview was with 3 people, the recruiter and 2 of the people I would be working with if I was accepted, and it lasted over 2 hours.

I had this thing in the bag. Why else would they keep me for 2 hours if there wasn’t some interest?

A week went by and there was no news. Then there was a rejection letter waiting for me, a hard copy, not the email I was expecting.

It took me a while to figure out where things went south. It took me even longer to know that there was nothing I could’ve done to change the outcome.

During the interview the recruiter kept mentioning how hard it would be to insure me due to my disability. I kept reassuring him that it would be illegal if an insurance company refused to insure me.

Something tells me that this was the reason why I didn’t get the position, although one can never be completely certain.

Over a year later I was sitting in a mentor’s office with my area director for the first of three area director visits, a requirement for the service program that welcomed me with open arms.

During that meeting I remembered that first interview. I saw then what a bad fit that would’ve been for me. I was exactly where I needed to be, even if the journey there wasn’t what I had in mind.

For a long time, I saw having Cerebral Palsy as a barrier that I had to overcome (and even hide) when I should’ve seen it as an asset; it took meeting with my mentor and area director to realize that it could be considered an asset, because that’s what they saw it as.

It’s easy to see CP as a constant barrier. 90% of the focus is on the various potential and actual barriers of living with CP. It’s easy to go with the flow and fall into the negative trap with the majority.

Instead of focusing on what you can’t do or won’t be able to do, shift the focus to the potential gifts of CP.  Everyone has limitations AND gifts, CP or no CP so you shouldn’t use CP as an excuse.

Don’t tell people what you can’t do, tell them what you can do, and then show it.

Be honest about your limitations (but don’t downplay them) and highlight your strengths.

Life is too short to waste time trying to please people who see you (or any part of you) as a hindrance.

Surround yourself with people who see you as an asset, not a barrier than needs to be overcome. They’ll make you a better person and you’ll make them better people.

More importantly, see yourself as a valuable asset because that’s what you are.

*A similar version of this post first appeared on an old blog on March 19, 2014

The Difference Between Want & Can

I can’t remember when I learned the difference between “want” and “can” but I’m pretty sure I knew the difference before I learned how to spell them or how to use them correctly in a sentence.

I haven’t mastered the discernment between the two but most of the time the choice is made for me (and I have scars and many more childhood memories to prove it). I use what I’ve learned in future decision making, and that usually means I become more cautious. Sometimes this system serves me well, other times, not so much.

I took up swimming again as a way to possibly heal my hip and get some additional exercise while doing something I truly loved, what it’s evolved into is so much more. I’ve not only gotten some hard physical healing but also mental challenges I wasn’t expecting. I still find swimming relaxing but not in the typical way people think when they think of the word “relax.”

One of the benefits of swimming with a coach is discovering new boundaries for “want to” and “can do,” and it doesn’t always come from your coach.

Whenever I’ve been asked what I want to swim I always say something I’ve wanted to do for as long as I’ve wanted to be a competitive swimmer and I usually end with “You asked what I wanted to do, not what I thought I could do, because those are two completely different things.”

I can’t be the 1st human on the planet to voice such a sentiment and I’m certainly not the 1st one to ever feel this way.

One of the best, albeit weirdest, gifts Cerebral Palsy gives a person is the knowledge that “want” and “can” aren’t words that can be used interchangeably without a certain level of determination and hard work. There are times when you do get lucky but it’s not often.

We want to do things but sometimes our muscles, thanks to our brains, won’t let us. The difference between “want” and “can” is easier to figure out, but make no mistake that doesn’t make it easier to accept.

Plus, the divide between the worlds of “want” and “can” are often further apart for people with neuro-muscular conditions, which CP is.

Sometimes changing your “want” to be more in line with the “can” is in order, other times it takes a lot of work because changing the “want” just isn’t possible. And again, sometimes you just get lucky, which usually comes after a lot of hard work.

I’ll give you a few practical examples:

Zachary knew he couldn’t be a professional baseball player but that didn’t mean he couldn’t write about sports.

John wanted to join the Navy but couldn’t after he failed the physical so he went home and practiced until he could pass the physical.

I want to swim a 200m IM (because a 400m IM is just too insane, even for me) but I can’t without putting in some serious training time first.

I’ve learned to appreciate the differences between “want” and “can.” I don’t always like how big of a difference there is between the two but that often brings up a question which needs to be answered:

How bad do you want it?

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

Almost 60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on October 8, 2012 & October 22, 2014