Sarah Leaves

I used to have a fairly regimented holiday season, and then things changed.

Taking the advice of a former coworker, when things changed that I couldn’t control I changed what I could control.

I leave.

As my mother keeps telling people “around the holidays Sarah leaves”.

As in claw around the holidays throw my stuff in a suitcase and hit the road, or sky, whatever fits.

In fact, I happen to be typing this while sitting in the back of an RV which sounds far more romantic than it actually is. Being a nomad, even temporally, isn’t for wimps.

Why do I hit the road? Because left to my own devices the holidays are filled with memories of traditions that lasted for decades.  I get out of my long time comfort zone of traditions by not acknowledging any, if I can help it.

Where do I go? Well that depends, it helps that my family has spread out in the last few years. It’s not nearly as expensive and much more relaxed.

If I can get a reasonably priced ticket and a place to crash I’m gone.

This new tradition of non-tradition helps in some ways but other aspects are more difficult.

There’s always lack of sleep to contend with but at the same time it allows me a better chance to think about other things rather than what’s still lodged in my brain. For example, it’s hard to get lost in grief when you’re trying to catch your next flight located across the terminal that’s scheduled to leave in less than an hour.

I don’t travel as much as I used to and truth be told I find it to be increasingly stressful but I do make these “pilgrimages” every year I’m able to.

I still get criticism from people for it but I don’t care.

My sanity must come first when I feel depleted or else I just spin within myself and it just gets ugly.

I don’t really leave. I retreat and recharge by changing my surroundings. I get out of my own head and in some cases out of my own way.

There’s nothing wrong with wanting to take a break of some kind, before, after, or even during, the holidays. It’s overwhelming and overstimulating for a lot of people, self-included, naturally. However, it’s much more common to criticize those who acknowledge that they need a break. Someday it’ll be the other way around, as it should be.

They Forgot Me On A Train

I do not enjoy train travel and my most recent experience didn’t help matters, which is probably a dead giveaway given the title of this post.

I travel to NYC once a year. People think because I’m so close I do it all the time. 1) It’s not that close and 2) the logistics involved are beyond ridiculous.

I know a lot of wheelchair users who prefer to travel by train, but I’m not one of them.

A few years ago, it was announced that all railcars would soon be fully accessible, meaning no need for bridge plates and worrying about finding a car with a wheelchair space.

Years later not all railcars in use are accessible, and even the accessible cars require the need for bridge plates, which means you need a conductor to get the bridge plate for you.

And therein lies the problem.

I knew I would probably need the bridge plate once getting to my arrival station so I parked myself next to it and informed the conductor. Once the train stopped at my arrival station (also the last stop of the night) I let everyone else disembark ahead of me and waited for the conductor, especially after I saw the size of the gap between the train and the platform I knew I shouldn’t even try to hop over it.

I’m waiting a long time so I see if the bridge plate was left unlocked. It’s happened before, but not this time.

My mother decided to stand in the doorway to prevent it from closing and hopefully flag down a conductor who might be passing by, no luck.

The starts closing and unlike elevator doors they don’t stop when met with resistance.

My mother is standing on the platform and I’m still on the train with no way to open the door.

I don’t see anyone who is still on the train or a phone number, instead I just see an emergency intercom.

My mother is trying to find someone without wondering too far from the train.

I press the button on the intercom & start screaming for help. It’s late, pitch dark, and I have no idea if or when they’ll turn the lights off on the train.

Nothing.

I press the button again & scream.

Nothing.

Again.

Nothing.

At this point I’m panicked and just want the door to open.

I try the intercom again.

Still nothing.

Finally, a conductor walks through the car, doing the final walkthrough, my screams weren’t heard.

He tells me that he told the other conductor, the one my mother saw walk off the train but she couldn’t get his attention, that I would need assistance. He asks if I still need the bridge plate.

(I want to scream again, but this time for an additional reason)

He opens the door, puts the bridge plate over the gap, and wishes me a good night.

My panic has been replaced by fury but because it’s so late at night all offices are closed and I’m forced to just go home.

I go over the whole thing in my head and then again, on the ride home.

There was nothing I could’ve done differently, and that’s what I still find to be the most frustrating.

The world isn’t always a friendly place for people like me.

That’s just not acceptable.

Not to mention worse than being forgotten on a plane.

They Forgot Me On a Plane

Feel free to watch before you continue reading.

My experiences traveling are different than Mike’s although there are enough similarities to relate.

Here’s the thing about traveling with a disability (from my experience), no experience is ever the same; even with something as standard as TS@ procedures.

I have family settling in North Carolina (with Florida being a close 2nd) faster than should probably be allowed. I need to figure out streamlining my air travel to anywhere in North Carolina or else my wallet would continue to be emptied in BWI out of sheer boredom.

There’s also the matter of traveling from point A (my home) to point B (North Carolina) could take anywhere from a 2 hour flight to an 8 hour day (if more than 1 flight & layovers are involved).

I got lucky when I remembered that Charlotte is a hub for a major airline (you can probably guess the airline that shall remain nameless).

At least I thought I was lucky (see: title of this post).

I did everything possible to prepare airline staff of my needs. I told them what I needed & asked questions for further clarification. I got nervous when I boarded the aircraft; due to its size, but sitting by the window helped. I slept the entire flight thinking I was in the clear.

I like to sit towards the back of the aircraft for two reasons, it’s easier on my spine & the ground crew needs time to retrieve my wheelchair, sitting towards the back allows them to do this without agitating me.

As I approached the door of the aircraft to deplane I caught the eye of one of the flight attendants.

“Oh no. We forgot you were onboard. Will you need a ramp?”   

 You what? Will I what?

I look out the door to see a flight of airplane stairs & they’re steep.

I guess that’s what that ‘do not walk behind the wings of the aircraft’ warning was all about. And come to think about it no one asked about whether I’d need assistance upon arrival.

Now I know to bring it up before leaving the departure gate before boarding……

I was tempted to ask the flight attendant just how she thought they’d set up a ramp safely now that half the plane was empty and the other half were waiting, but I held my tongue. I told the person I was traveling with to go in front of me so I would have a better grasp on spatial awareness (by looking at her shoulders instead of the stairs).

I made it down the stairs & I looked for my wheelchair, which was placed (brakes on, to my surprise) in front of the wing, just barely.

While waiting for my luggage to be unloaded I snapped a picture of the plane to send to friends & family, with not so comical commentary, to let them know we had arrived safely. Not long, maybe 3 seconds, after I press send I start getting replies.

“How did you make it down the stairs?”

“Didn’t you tell someone you needed help?”

“What if you couldn’t walk?”

The last question was the one that really got to me. I’m fortunate that I have good enough mobility that I can make do when unexpected situations arise. As unpleasant as being a forgotten passenger was the situation could’ve been worse. I could’ve been stuck on the plane until they got the ramp, however that would’ve happened.

Getting into the terminal was another challenge. I was told, and I’ve also read, beforehand that the Charlotte airport was going though major renovations. I hope this is true, because if things stay as they were the accessibility is pretty terrible.

I hope that eventually, meaning sooner rather than later, that every flight can be given a jet-way that leads straight into the terminal so stairs and/or the need for additional ramps isn’t even a thought.

I’ll probably use the airline & the airport again. It wouldn’t be my first choice. If there is a next time, for whatever reason, I’ll be better prepared. I hope the airline will be as well.

When I’ve retold my experience to others they’re shocked that the flight crew forgot I was on board. It wasn’t the first time it’s happened & it probably won’t be the last. I do my best to express my needs and concerns to who needs to know, and maybe a few who don’t. That’s all I can do. But that doesn’t make it suck any less.

Do you have any interesting travel stories?

*A similar version of this post was written on May 20, 2013

Sitting On Saints

Catholics have an interesting relationship with saints, we ask for their intersession, visit shrines, we may even stand in line to view their relics (which sometimes includes their actual body).

I admit that I don’t fully understand the significance myself. However, I also need to admit that I have also taken an already misunderstood relationship with saints to a new level.

I sit on them.

(Yeah, you might want to read that again and let it sink in.)

It wasn’t something I was planning on doing, but it just kind of worked out that way.

I made an offhanded comment about whether or not St. Joseph of Cupertino would intercede on behalf of the safety of my wheelchair during flight. Because every wheelchair user has at least one airline horror story that’s wheelchair related. He is the patron saint of air travelers, and I have admitted that I often refer to my chair as a person, so I didn’t think such a question was that far out in left field.

 

And before we go any further, my chair does not share a name with a saint, at least not from what I can gather. Besides, that would be a little too strange.

I had this idea to get a patron saint medal and somehow attach it to my chair. But it just didn’t work out. I might’ve had better luck if I was within walking distance of somewhere that has every patron saint medal under the sun, but that was so long ago now.

It the flurry of preparations for my swim meet the thought resurfaced, although I had no idea if there was indeed a patron saint for swimmers. I knew of St. Sebastian, patron saint of athletes, but I wanted to find something a little closer, if at all possible. Because I really could use all the help I could get, even if I doubted it would make a difference.

There seems to be a saint for nearly everything, until you get specific.

It turns out there is a patron saint of swimmers/swimming, Saint Adjutor of Vernon, who, escaped, apparently swimming to freedom.”

Considering my history with swimming and my goal of not drowning during a race it seemed like a good fit.

I embarked on my original mission, with a different saint, get a patron saint medal and somehow attach it to my chair. However, finding anything on obscure saints is a challenge, and if it isn’t, it costs more money than you want to spend given one’s individual needs.

I got the idea of putting something inside my seat instead. Wheelchair seating typically comes in layers so it wouldn’t be completely out of the realm of possibility to slide something under the cover and leave it there. But if the top layer gets wet it tends to seep all the way through, requiring a complete dismantle of the entire cushion, which is if nothing else, annoying.

I found a workable solution however.

Yup, pictures of saints in plastic baggies.

I slide them into my seat cushion and no one knows any difference (well now you do, because I said something).

There you have it, I sit on various saints, albeit in the spirit of intersession & reverence.

 

Planes, Trains, And Automobiles

I love traveling, or at least I want to love it.

Don’t be surprised if there’s a part two for this; which would probably include Boats, Buses, and Piggybacks.

Here’s the funny thing about my traveling experience.

I don’t really have any.

I’ve traveled to various places in the United States but I’ve barely been out of the country. I’ve had a passport for years but it’s empty, I’ve used it solely for identification reasons.

What’s really insane is that every time I’ve had the opportunity to travel, particularly overseas, in the last few years I’ve looked for reasons not to go. Actually it hasn’t been that difficult, which is probably part of the problem in itself, I have limited finances, I can’t get the time off, or some other reason contingent on the situation.

Rumor has it I may or may not have come from gypsy stock but my direct ancestors really like to stay put. Personally I find the whole thing incredibly boring, but the funny thing is it takes a lot more for me to travel than most people.

Traveling by car may seem like the easiest and most obvious choice for a lot of reasons. I have a love/hate relationship with it. If it’s over 6 hours & there are more than 4 people in the car, it really should be a minivan. It’s not physically uncomfortable as much as it is mentally taxing.

However, there is something to be said for setting your own pace. Like stopping whenever you’d like to take care of any need(s) that may come up. Like a dire need to pee without having to worry about one small bathroom everyone else has used in a small time frame. Naps on the road are also more conducive, as are discovering local awesome places to eat, and music to set the mood.

Whenever you find yourself on the verge of a road trip be sure to have a travel buddy. It makes the trip much better, or worse but usually better.

Train travel. This is the mode of transportation I’ve most frequented. I pretty much know it backwards, forwards, and sideways. I also have plenty of stories to prove it. I’ve been on everything from the subway to national train lines. Each has their positives and negatives, like most things. Most times it’s a choice between riding the rails and taking flight for most people. If you’re big on people watching the train is the way to go, by a landslide.

However frequent delays and overcrowding is always hanging over your head, at least if you’re me. I’ve found it’s often a lot easier than one would think for people with disabilities (the actual stations are often another story). But regardless you need to do your research, not all cars have ramp access for example. And if you’re going on a longer trip via train it’s always a good idea to give people a heads up since wheelchair spots are located close to the oversized luggage compartments & they’ll want to have an actual space for you.

Travel buddies are optional. I’m not one to make a habit of it on a train but it helps the trip be “less stale” if you frequently take the same route.

Lastly my personal favorite, up into the wild blue yonder, flight; however, this is when most bad experiences happen. Basically the best advice I can give is plan for the worst (& every possible contingency) & hope for the best. I’ve traveled with and without my wheelchair as well as with and without AFOs so no experience has been the same. Regardless of when & how I fly I try to be as direct & clear as possible with all the staff I come in contact with.

When I was preparing to fly to the west coast I deliberately booked a nonstop flight. It may have cost more but it was a big trip so I wanted to remove as many travel barriers as possible, like missing a connecting flight.

I had originally planned on shipping my chair since I pictured getting though a crowed airport to be easier without it as long as I had the physical stamina. However, one of my contact people told me it would be better to carry it on my person than ship it because there was less of a chance of damage. I understood his point once I saw my frame had scratches after deplaning & my luggage was “lost” after another trip.

If I have to have connecting flights I request someone meet me at the gate to take me to my next flight. For one I don’t want to get lost. Another reason it’s a lot easier to ask for when booking your flight than when you get to the airport, and since it’s only accomplished 50% of the time, just plan ahead to avoid arguments with airport staff.

When flying to my cousin’s wedding in the Midwest I had a connecting flight & little room for error. I requested someone meet me at the gate to take me to my connecting flight. After waiting for everyone else to deplane & having the flight attendant page someone to the gate no one showed up. I was prepared to get to my next gate myself since I was told it wasn’t very far away. Instead the pilot (from my 1st flight) took me to my next gate. Up until then I had no preferences for certain airlines but I do now. How many pilots do you think would do that? (I only wish I had gotten his name to send him a thank you card afterwards)

I’ve done more flying alone than I have with someone(s) else so that’s my comfort level. But if I’m flying with someone(s) I prefer that they’ve flown before. First time flyers take more mental effort from me than I’m usually willing to give.

Traveling with a disability is possible, sometimes enjoyable, and often memorable. It may take some more thought & effort on your part than your peers but it’s defiantly worth it.

I plan on traveling more in my lifetime, once I run out of excuses.

*A similar version of this post first appeared on an old blog on March 8, 2012

When Normal Is Nice

If you asked me 6 months ago if I thought I’d want to be in a celebratory mood when December came around I would’ve had some kind of major emotional response, and it wouldn’t have been pretty.

The last year, particularly the last 6 months have been almost unreal. Aside from my (un)usual course load and near insane travel plans there has been a lot of navigating uncharted territory, and little of it was pleasant, or good.

I tried burying myself in work and school but it didn’t always work. There were sleepless nights, lots of questions, and even more tears.

One of the more notable things being sitting next to someone’s hospital bed rather than being the one in the hospital bed, normal people would consider that a good thing but coming from the point of view of a professional patient it was uncomfortable.

I was in uncharted territory.

I’m much more comfortable being the one in the bed than next to the bed. I think family, friends, and medical professionals would prefer it that way too. I’m pretty much a pain in the ass when I’m the patient but I’m insufferable when I’m the “family support” (and the fact that I can recognize that should tell you something).

I’ve had those uncomfortable conversations that people like to avoid, all over again, because if I’m ever back to being the one in the hospital bed. I want everyone within a 20 mile radius of my room to know what my wishes are, right down to how I’d like to be dressed, in the event I cannot speak for myself.

Then things changed, again.

What started as relief turned into a whole other series of questions, in the end I had to recognize that this was “the new normal” that people talk about so often; another uncharted territory that required exploring, and then accepting.

I thought I knew where I stood on a multitude of issues, but I was forced to reexamine my motives and change my position on more than a few things.

For example, I never understood how people could say that a loved one was “still there” after suffering a stroke or being diagnosed with dementia. Now, I’ve read My Stroke of Insight and many other books on neuroscience. Intellectually I understand that someone isn’t completely gone but I couldn’t grasp it on any other level, until I encountered it up close and personal.

And it’s amazing to witness (although, admittedly, not always easy).

Like so many others I’ve focused on the quality of my life over the quantity of my life (and then proceeded to project my thoughts onto others silently as well as out loud). It’s not so black and white. There’s a whole lot of grey in the in between that needs to be acknowledged, questioned, processed, and then accepted.

Allowing yourself to able to live in a normal, even if it is a “new normal” is nice, if you let it.

Grad School: The Second Summer

This was my 2nd summer as a grad student.

I was looking forward to this summer because last summer was so amazing. I’ve never been a school person but the idea of spending 3 weeks immersed in school was so exciting. I wished there was a fourth week.

By the time I actually started the third week I was more than ready to go home (it was my 3rd locale in a week, who could blame me).

Truthfully I had a minor meltdown when I got to my room and realized how quiet it was. My brain just couldn’t take it, CNMC just shoved my brain into overdrive and it stayed there, I guess. I begged friends to stop by for a quick visit but they were too entrenched in coursework (as I should have been) to oblige.

Have you ever seen an introvert in desperate need of alone time when they finally get it? It’s not always pretty. I think I spent 10 minutes trying to decide what to put in the bathroom and what to leave on the dresser (and trying not to cry about it).

I also missed the blessing dinner for the graduates. This year it was a lunch which I just couldn’t fit in with my over packed schedule. The blessing of the graduates was a highlight for me last year so I was disappointed to be missing it this year. I also have a lot of friends graduating this year so I wanted to say good-bye to them. Luckily I ran into the ones leaving the next day later that night so I got my wish, just not in the way I pictured it.

I knew the 2nd week of classes was going to be the most challenging. Not only was I taking 2 classes but I was registered to fulfill the 2nd part of my formation requirements for the year.

It basically boiled down to 12+ hour days Monday & Tuesday. I wasn’t running on steam before the week was half over, but let me just take a second to publically thank God for great friends and equally great study groups.

I was feeling better about Wednesday. I think because the first two days were so packed and stressful I just let things go. I did what I could the best I could and left it at that. I didn’t worry about not getting to read Humanae vitae or whatever. If I needed to read it, I’d get around to it.

Also after living through my 1st ever tornado warning, complete with sirens and please take cover in the hall, my nerves needed a break.

Funny story behind my history with Humanae vitae, I’ve read it twice previously for fun none the less but I couldn’t remember a single thing about its contents. (Please tell me you find that funny, and not incredibly sad.)

I was also down a highlighter and a pen in spite of bringing more supplies with me this year. I’m thinking this might just become par for the course during the summer.

Wednesday night I ventured downtown with a small group of friends for Symphony Night in the park. Who wouldn’t want to be able to say they’ve heard the Chicago Symphony live, and for free?

I was feeling much better about Thursday and Friday because it meant I had survived the roughest part school wise. At the same time I was getting closer to having to say good-bye to more friends.

One of my classes many graduating friends in it, more than I realized actually, in fact when we were heading to class the first day one said, “oh we’re in the big room.” Not only were we in the biggest classroom available but we filled to maximum capacity, at least comfort wise.

I knew most people don’t stick around for the 3rd week but I was hoping to be surprised, in a good way, by the number of people who did. In the end I think 5 distance learners, my self-included, stayed for the 3rd week (one of whom I never saw so I have no idea if she was even there).

A group of us went out Friday night for one last gathering before departures began first thing the next morning. It was a wonderful time of relaxation and fellowship, and I discovered I do in fact like Thai food and it does like me (although I’m not sure it would ever be my 1st choice).

Basically week two ended with a lot of good-byes followed by self-imposed seclusion over the weekend. Not only was I tired but I needed to take the time to allow a new reality to set in. I was basically alone on campus for two days. It gave me time to reflect, which I needed in order to fulfill my retreat requirement, but it was also very lonely.

I greeted week three with guarded optimism. I was looking forward to class because I’d wanted to learn from this particular professor since I heard him speak at a conference 2 years before. (And people claim I can’t be a patient person?) But I was preparing to spend much of my free time living as a hermit (and finishing Burn N0tice), which I basically did.

The environment of week 3 was so different compared to the first two weeks it took some time to acclimate to; although I’m not sure I can say I ever fully adjusted to it. There was much less socialization between students so I spent time with the girls in the recruitment since we share some important interests.

Halfway through the week I had had my fill of the same theologians and then I realized my classes had some overlapping qualities. You’d think this would be a good thing, but when you’re not 100% of anything you’re learning it can create some worry.

I joked, although not really, that I was going to end up writing my papers all wrong, or I was going to come up with some brilliant insights that were going to change the study of Theology as we know it.

I’m not sure where I ended up with that one; maybe a little of both?

I can hope, right?

Week 3 ended with another good-bye dinner, which I coordinated. Thus making it my 3rd good-bye dinner in 3 weeks (too much, way too much) but I’m glad I got the chance to have time with such good friends, no matter how exhausted I had become.

With that my summer classes ended, but as someone said (and I happen to agree) the work was just beginning.

 

#CNMC15

The 1st stop of my trip was The Catholic New Media Celebration in Atlanta. Which was well over a month ago and as much as I wanted to write about it sooner but whenever I had the words I didn’t have the time and when I didn’t have the words I had the time.

At the last CNMC my recap consisted mostly of pictures. This time is different though, because I didn’t take any pictures (or tweet a thing) thankfully I’m not alone.

And if it works for Greg Willits than its good with me too, at least that what I’ve been telling people when they ask to see pictures (and then I have to explain who Greg Willits is).

Tiffany was generous enough to agree to be my roommate and companion during the weekend. We met in the airport and went to check in at the hotel (after my attempts at the damsel in distress routine to gain assistance from Billy Newton failed miserably).

You should probably read Tiffany’s account of the experience since her post was fresh in her mind when she wrote hers, unlike this one.

Our room wasn’t ready for us so we headed over to the Eucharistic Congress while we waited for a phone call from our hotel. We decided pretty quickly against attending any of the talks, mainly because we were both sleep deprived. Instead we strolled around to see if we could find anyone we knew.

One of our first stops was the SQPN booth, after a quick detour to my school’s booth) but more on that later), where we met Fr. Cory & Fr. Darryl and took our now pretty famous extreme selfie.

Once we realized it was past check in time and we still hadn’t gotten a call about our room we headed back to the hotel to check in & finally decompress for 5 minutes.

While Tiffany was at the Jubilee Dinner I did homework. And by did homework I mean I went to the gym, ate dinner, took a shower, and kept tabs on the Jubilee Dinner thanks to the #CNMC15 Tagboard Lyn Francisco created. Basically I should’ve gone to the dinner because I wasn’t I wasn’t helping myself out in any way, at all.

The next day was when all the real fun happened. Tiffany & I sat at the same table with Sr. Anne which was total Providence, in my opinion, so it was nice to talk to her in person since I’m been telling people in my life about her for a while now.

Greg Willits’ keynote was amazing and just what I needed to hear, without knowing it’s what I needed. Don’t you just love when that happens?

The rest of the day was pretty much a blur of workshops and networking, and most importantly genuine community.

I had a list of goals in my head of things I wanted to accomplish and a list of things I’d like to accomplish but it would be OK if I didn’t. I was able to cross off everything on both lists and then some. 🙂

Like cornering Capt. Jeff, The Airline Pilot Guy, at lunch and asking him all kinds of air travel type questions; such as why “closing the bridge” due to lightning means people can still get off an aircraft but anything gate checked needs to stay put. Thanks Capt. Jeff & sorry about the inquisition.

Other highlights of the day were meeting Lisa Hendy of Catholic Mom and talking to her more about how she got started as well as talking to Maria Johnson in person since I’ve been bugging her for her feedback on various things for at least the last year.

After the conference was over I headed back to the hotel with Mac & Katherine Barron, of Catholic in a Small Town, who happen to be two of the nicest people ever. I had a great time talking with them and I hope to have the chance again in the future.

Once back at the hotel I met up with Tiffany and a few friends to go to dinner, except those few friends had turned into a group of 17 (?). I’m not even sure how many of us there were but it was one of the best group dinners I’ve ever been to, and I know there are a few pictures of it floating around F@cebook. During dinner I sat next to the older sister of a college classmate which is pretty unbelievable, even considering our alma mater).

Lisa, from Of Sound Mind and Spirit, was also at my end of the table with her kids. She was great to have dinner with and now I want to visit Houston!

After dinner I had every intention of packing and going to bed but Tiffany invited me to go with her to meet a few people in the hotel bar. So we headed back out the door and downstairs (I blame my severe FOMO, in spite of my introverted-ness) where we enjoyed more socializing and met (all too briefly) Jennifer Willits.

After such a great day with everyone I really didn’t want to go to bed but one can only hold off reality for so long. Thankfully Allison, of Reconciled To You, and Tiffany had made plans for breakfast so the next morning we said our good byes to Steph (TV Rewind Podcast) & Marika (@oneeyedsmiley) in the lobby before heading to the airport for breakfast.

My CNMC experience ended, at least for now, with a final good bye to Dee, of Catholic Vitamins, before heading off on the second leg of my trip. Now that home I have one final thing to say, well Steve Nelson said it first, but I agree.

And if you want another good review of CNMC15 you should read Steve’s thoughts (and/or Maria’s link up).

3,300 Miles, 22 Days, 4 States

3 Classes
2 Conferences

And a partridge in a pear tree.

Where do I begin?

I knew this summer was going to be busy. The structure of my degree program has made that very clear until I have that diploma in hand. My summers are spoken for, even before you add (in no particular order, at all) a job that pays the bills, a still-budding career, family & friends commitments, sacrament season that occurs just before summer, and that eating and sleeping thing.

I knew in January the calendar year was full, so full that my commitment fearing- self, sat down and wrote out a calendar. I filled in what I could and left a list of “items needing to be dated” in another column.

The Catholic New Media Conference (or Celebration) was at the top of that second list. I had such a good time during the last one (essentially being baptized by fire) that I knew I had to go to the next one. I just needed a location and date.

I prayed like hell that it wouldn’t fall around my proposed course schedule, or worse, right in the middle of it.

It ended up being the Sunday before classes started. Did I really want to spend a full day learning and socializing and then go directly to class first thing the next morning? Not really, bordering on “no.” But I checked the proposed summer courses schedule again and found a slim chance to make all of this work.

Not wanting to do anything stupid, unintentionally, I emailed my academic advisor for the “OK.”

I would go to CNMC and then head to campus to fulfil my “in residence” requirement for the year.

But that left a few free days; which left me wondering what I should do with them, going home for a few days didn’t make much sense and as much as I would’ve liked to stay in Atlanta, it just wasn’t in the cards.

So I headed to my dad’s for a few days since it’s so much easier to get a direct flight from Atlanta to my dad’s than it is to get to my dad’s from the closest major airport to my home. Ironically I’d have to fly to Atlanta and then change planes to get to my dad’s.

The plan was for the rest of my books to be delivered to his house to avoid any hiccups in the delivery. The rest of the plan was to do copious amounts of reading to get ahead of myself and hopefully avoid a few late nights. I’m happy to say that plan half worked, because every other time I’m made a similar plan I’ve blown the plan to bits in the worst possible ways.

During preparation for all this travel I happened to mention that I wished I could go to the Abilities Expo this year since the dates fell just so and I would be in the area. Suddenly I wasn’t going to be traveling to Chicago alone anymore, much to the delight of my already overloaded suitcase.

As my initial departure date got closer I realized how insane this whole plan was. I’d be away from home for three whole weeks, for one thing. I’d basically be embarking on a mini national tour for another. There were so many details that I didn’t think about initially that kept driving me to fits of panic.

What if I can’t repack all of my stuff?

What if I get sick?

I’m probably not going to have time to go swimming for 3 weeks.

What if I get a flat tire?

I’m going to be sleeping without my pillow.

The last three items on this very short list were the most concerning.

I was adamant that I was going to be “carry-on only” but I let that one go fairly early & quickly once I started packing like I was preparing for the apocalypse in addition to needing to pack books (not kidding).

In the end I had to break the trip into sections ad pack according to those sections. But it all boiled down to “just manage to get to Chicago with as little trouble as possible,” and it worked, mostly.

Now that I’m back home (and back to reality) there’s decompressing to do, papers to write, items to respond to, among so many other things.

Too much travel is more disorientating than I bargained for. Now I know why celebs appear to be so high maintenance.

Being Mis-Matched

I’ve never thought of myself as a disabled person.

Instead it was a label placed on me and I’ve learned to embrace it.

I came into this world with it and that’s how I’ll leave. It’s normal to me. So if you asked me, until recently, if I saw myself as normal or disabled I’d tell you normal. More than likely I’ll still tell you I’m normal, with a disability.

My disability was not acquired. There was no accident. There was no stroke, Cerebral Palsy can be caused by a stroke but mine was not. I don’t have a story about when my life changed. I don’t have time segmented with before disability and after disability.

Technically I’m handicapped. A handicapped person can be classified as someone who did not acquire a disability but has impairment or some kind.

However if the situation were different I suspect my thoughts on this subject would be different. Would I wear it as a badge of honor as some do? Or would I gripe in my struggles? I can’t really say. I haven’t been there to say. I can tell you all about what I would like to be like, or what I might be like, but those are just guesses at best.

Lately I’ve been thinking about how mismatched I am for the life I see myself having & what makes me the happiest.

Disability has become the more socially acceptable term so I’m subjected to rules, laws, red tape, and type face that does not apply to me, if you’re looking at it though the lenses of the definition of a handicap rather than a disability.

These days the only time you hear the word handicap without worrying about the onset of a riot is in reference to golf or a parking spot.

I’m not putting out a call for a change in terminology, but I am asking you to simply consider this for a minute or two.

I’ve made a semi-offhand comment, on multiple occasions no less, that I missed the memo about people with disabilities being cubical people, because that seems to be the assumption and there is some truth to it.

Unfortunately I’m defining my own truth. Actually how is that unfortunate? If I have to redefine assumptions then so be it. I may not be able to do everything asked of me at any given point, but can you name one person who can? That doesn’t mean I have to sit in a cubicle, or even a corner office, all day and be bored within an inch of my life.

My body doesn’t match what my brain likes to do. My brain doesn’t believe my body shouldn’t do some of the things it probably shouldn’t and even can’t do. And it really is 50/50 as to whether my brain or my body wins the battle.

I’m a born and raised New Englander. I’m less than 2 hours from New York City by train. The Big E is a major event in my life every year & the letter R becomes an afterthought if I’m being too casual or I’m really really angry.

My mother’s lived in the same house my entire life, and so has my grandmother. Everyone pretty much left Ellis Island and liked it here in these parts so much that they decided to stay. My dad’s mother is from Chicago and still managed to make herself a New Englander. So I’m pretty positive none of my folk joined any wagon trains and ventured west.

However I’ve had a fascination with the west ever since I can remember. I’d sit and stare at my U.S. puzzle and wonder just what was out there. New England, a composition of 6 states, is just one puzzle piece. All other states have their own piece. And the western states are the biggest pieces, just what was in each of these places.

My friends would tease me for watching rodeo events on T.V. calling it low class or culture (oozing with sarcasm). I didn’t understand what I was watching the majority of the time but I was fascinated enough to keep watching. After all rodeo is the only sport with its roots in an actual occupation, and that in itself deserves some additional respect.

I don’t remember the first rodeo I watched but it was on T.V. and I’m not sure why I put it on. All I know is when I started watching I thought I was watching insanity on display but by the end I was hooked. By the end I understood the motivation, even if I didn’t understand anything else.

I ventured west on a 757, well maybe not, but it was on an airplane. I had just finished reading a book from the Love Comes Softly series, which I find much more enjoyable than Little House On The Prairie (for the record), so my brain went straight to wagon trains and pioneers. This was my venture west. My family may not have the desire for such a thing, but I did and now it was happening.

I found a new home in the Northwest. I still had my New England accent, did things way too fast, and found the friendliness of people strange for a while. But it became my home. In fact when an administrative assistant asked if I had “grown up here” and I almost said, “Yes.” It wouldn’t exactly be a lie if I had said yes; I mean I did grow up there. “Yes,” would be the short answer, and the long one.

I’d love to live and work in the same place (and to some extent I do, now). I’d take manual labor and the outdoors, or at least an unconventional career path, over a corner office (or telecommuting) and paperwork any day. I’m in love with a lifestyle that’s dying out.

You see, I’ve come to the conclusion that I’m mismatched in several areas of my life. But it’s only a matter of time before I find my match. If I don’t find a match, I can always make one. After all isn’t life making something of yourself, and the world around you?

*A similar version of this post was written on May 17, 2009