About Help Continued

I had no idea this was going to go this far, but God had other plans I guess.

What stated with a Tweet:

“If someone with a disability needs help they’ll tell you & how. DON’T tell them what they need to do & how. That’s the worst thing to do.”

Evolved into a post*:

When someone tells you they need help ask how you can help them. It probably took a lot to even ask for help because honestly who really wants help. It’s like admitting weakness. To admit you need help you need to come to a point when you realize admitting your weakness might actually work out for the best. To turn that around on someone is at times just cruel, not to mention a break in trust someone had in you. Speaking for myself, I don’t ask for help from someone I don’t trust on some level, no matter how badly I need it (I have plenty of scars from bumps and bruises to prove it).

Help comes in different forms. I don’t like knowing I’ll need a lot of help from others, or at least I like to think that way, so I try and avoid it as much as possible. And if I do end up needing help I try to tell people I trust and I know they don’t usually mind it, and if they do they’ll be honest about it.

Ask how. Don’t tell how. In all likelihood someone’s put more thought into it than you realize. Attempting to think you know better, and then actually saying it, you may as well spit on them or slap them in the face. Not only are you not helping, you’re making someone wish they never asked in the first place.

Who wants to live in a world where no one wants to ask for help for the simple fear of being disappointed? Certainly not me, and I’m someone that needs some help from time to time (but find someone who doesn’t).  *portion of original post

Has now moved into conversation:

While spending time with a friend’s parents her dad told me about his recent experience with trying to help someone; which left him not wanting to help someone ever again (which I know he won’t stick to because he’s not that kind of guy). I should tell you that he is an amazing man & anyone to receive any help from him will not be disappointed. He’s also the type of person you can talk to about anything for any length of time; he may be a physician by trade but he’s been known to have conversations about church history, bridge structure, and wars in the 1800s without difficulty. So I thought explaining “the help thing” to him would be a good place to start if this were to ever become a thing.

I had my post, and previous experience, in mind when choosing to wade into the waters with this one. Unfortunately, things didn’t go as well as I hoped it would, which is totally my fault.

In the end I told him about Jennifer Rothschild’s book Lessons I Learned In The Dark. I had 2 reasons for this. The first being I know he likes a good read which this book certainly is. The second being I could never put the right words to disability before this book, but now I can, or at least I try. Really it just seemed like the best way to save my point the best I could, begin at the beginning and all that.

In the end I can’t remember what I said. All I can do is hope I did the right thing.

And have faith that one bad experience in trying to help someone won’t stop a person from trying again (and again, and again).

Because if it does that doesn’t help anyone at all.

Now that I’ve gone this far what’s next?
A book?
(God help us all)

*A similar version of this post first appeared on an old blog on December 9, 2011

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From Here To There

I’ve given you my thoughts on SDR 30 years later, but what I don’t think I really told you is what that can sometimes mean for me when it comes to daily living.

Having Cerebral Palsy means my brain can’t always communicate with my muscles effectively, or at all. Not only do I have to think about every move I have to make but sometimes I have to think about every step of the process. As John Quinn says in his book Someone Like Me it’s not uncommon for me to have to think out how to walk, as in ‘Go. Pick up left foot. Put left foot down. Pick up right foot. Put right foot down. Stop.’

Now because I’ve had a SDR there’s always some extra thought in the process, especially if I’m doing something new, requires correct form, or it’s hard for me to see my feet. I have pretty good spatial awareness given my deficits but it can take a while for my brain and the rest of my body to get on the same page.

I’ll give you three examples:
-If I’m asked to move my feet laterally I have to be looking at my feet in order for even the most remote chance that this could happen.
-If I’m going to be prone on an exercise ball I often ask someone to “set my feet” before I start any exercise, because being able to look at the position of my feet and stay balanced on a round movable object and then move my feet if necessary. I have gone to check the alignment of my feet only to find one-foot laying parallel on the floor and the toe of my other foot pointing to the other one. When you can only feel pressure in your feet it’s pretty easy to think you’re balancing on your toes.
-If I’m going to cross my legs I usually have to pick up one leg and cross it over the other, unless I want to chance flinging myself out of a seated position by allowing my legs to move under their own power (which has happened).

” Does that make sense?”

“Up here it does, but who knows what’ll happen when it gets down there.”

This isn’t an uncommon interaction between a physical therapist (or trainer or coach, etc.) and myself; you see it’s not so easy to get instructions from here:

To travel down here:

Spine

To end up here:

boots

And get the desired results.

Yet it happens every day, multiple times, more than any of us can probably count.

So we should all count our blessings for each time traveling from here:

To there:

shoes
(or anywhere else)

Is successful.

Because sometimes it ain’t so easy.

*A similar version of this post first appeared on an old blog on February 23, 2010

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.

#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).

Grad School: The 1st Year

I’ve been a grad student for a full year. It’s a cliché to say it’s been a blur of a rollercoaster ride but it’s the truth. I remember (although barely) being sent a blank tracking sheet and being asked to fill it out and email it to my advisor prior to discussing the upcoming year. I had seen it before, prior to deciding which degree program to apply to, but this time was different.

This time was “how am I ever going to take this many classes?”

A year later grades are being added and the next year of classes are being filled in.

It isn’t looking like I’ll be in school forever anymore (although graduation is still far off).

I figured I’d average one class a semester so I wouldn’t get overloaded but once reality set in that plan changed, numerous times in fact.

So I began taking 2 classes a semester. Not a big deal really. I was surprised by how natural it felt to coordinate so many schedules each dictated by another person.

I had a handle on the year until this past semester, and then things went nuts, like giant coconut sized nuts. I thought about dropping my classes but I was too far in to quit now, and dropping classes would just mean having to take them again later on.

So I sucked it up, sometimes barely, and kept going. I put down the movies and fun social events and picked up the books more. School became my escape, although I wouldn’t say I buried myself in my books (but that’s another story really).

I watched my “need to read” pile shrink.

I did in fact read the entire pile except 1 book (and the encyclopedia, I’m not that nerdy). However that’s just the book pile the articles and ebooks is another story.

Last week I turned to the pile to pick up the next book I needed to read and realized there wasn’t one there. I was relieved, and a bit lost to be honest.

I started to clean up the pile that’s accumulated in the last few months, except it’s not just from this semester. It’s from the last school year, which started in September.

It’s been a long year.

It’s time to clean, organize, and put away.

And of course gear up for the next year.

The battery in my mouse is dying, right on schedule.

If I had any skill at all I’d probably make my friends and family a cake that looks something like this because I more than willingly admit that I haven’t been the easiest person to be associated with:

Oh yeah and I started posting on Instagr@m after creating an account who knows how long ago.

CP & Hiding

I’d be lying if I said there weren’t times I wish I could hide my CP. I’d be lying if I said there weren’t times I tried to hide it, and did a pretty bad job at it. I’d also be lying if I said I could hid it 100% of the time, if I’m walking around you definitely know something is up even if you don’t know it’s CP, usually people think MS or ALS. I have a better chance of hiding it if I’m sitting down or if I’m in my wheelchair, but even then the wheelchair is a dead giveaway of some sort of disability, although people usually assume paralysis.

CP is the most common motor disorder among children but it’s not the most common disability people assume. I don’t even think I need both hands to count the number of times someone has directly asked me if I have Cerebral Palsy.

In his book (Someone Like Me) John W. Quinn tells all about how he hid the fact that he has CP throughout his life, including his 20 year Naval career; an impressive feat considering life aboard ship(s) can be challenging even for the able bodied.

I commend John for being able to keep his CP a secret for so long, especially since it’s physically exhausting (for me) to try and hide my CP for even a few minutes.

However it appears that not everyone shares my sentiments:

I get the point and understand the frustration. Someone can do something you can’t. It can be frustrating to admit that you need help do something, and even more so when you can’t do it no matter how much help you have.

However I don’t really find it insulting (or inspirational for that matter). It’s just how one person’s life has played out thus far.

I think we can all agree that it’s not a good idea to keep secrets or hide anything about yourself as a general rule. But aren’t there exceptions? Should there be? Not everything needs to be disclosed all of the time, and sometimes full disclosure can result in being laughed right out the door (as would’ve been the case if John had disclosed his CP & even he admits that he would’ve loved to be honest with everyone every step of the way).

Let’s not ignore the fact that keeping a secret (or many) takes a toll on a person on so many levels that it’s not really ideal to keep them if you can help it. Basically even if you can “hide” something you’re not really that lucky, each decision has its consequences (good and bad).

Contrary to the cliché the grass isn’t always greener on the other side so next time you see what someone’s done as insulting consider what they’re doing to themselves instead of what they’re doing to you and others.

Another Year

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Every year I say if you asked me a year ago if I thought my life would look like this a year from now I’d say no. And this year is no different, at all.

Last year practically everyone I knew had some story about how they lived the year I was about to enter. No matter how many stories I heard from whomever they fell into one of two categories.

It was the best year of their lives
or
it was the worst year of their lives.

I started to ask why that was after the 5th story, for no other reason than people were adamant about the way they felt, but never once provided a reason.

Once I asked “why” some people did provide their reasoning, but very few. It wasn’t because they didn’t want to talk about it or because they couldn’t remember why, they honestly didn’t know why. I then adopted the policy of, “don’t tell me how you felt at my age, unless you can tell me why,” because I just couldn’t stand hearing another story, especially from people who enjoy butting into business that isn’t their own.

Interestingly enough my eye doctor had the most in-depth and straight forward answer (because even he had an opinion). I understand his reasoning and if I were in his position I think I’d agree with him (because being a student for most of your life doesn’t sound like fun) but as his long time patient I’m thankful he spend all that time learning.

As I look back on this past year I’m going to tell you my conclusion of such an infamous year.

It wasn’t the best year of my life
but
it wasn’t the worst year of my life.

And I can tell you why, because I’m saving my ten (to borrow a line from The Fault In Our Stars) and I’m saving my zero.

Why?

While it’s true that I don’t think I’ll live as long as some of my peers I’m not ready to cash in my chips yet and call one year the best or the worst of my life just yet.

There’s also the matter of this past year has been so drastically different from the last few it really impossible to do a valuable compare and contrast.

For example:
Last year I traveled every few months. This year I’ve barely moved from sitting in front of my laptop (even though my laptop is fully capable of being taken on the go).

Last year I worked a lot, sometimes more than I should have, and wondered if I should really go back to school. This year my hours were cut back and I’m learning to balance working and studying (and passing classes).

Last year I read whatever I wanted whenever I wanted. This year I’ve read required and recommended course reading. I think I’ve read one book for fun, thanks to Arleen Spenceley.

Last year I made countless connections on the speaking circuit but very little came to light. This year I gave my 1st of (hopefully) many talks and was considered “Faculty” at a continuing education conference.

Last year I asked for things, as gifts, that I didn’t want to spend the money on myself. This year I asked for textbooks and anything of direct monetary value to help pay tuition.

Last year I watched more friends “finally” (their word not mine) embark on their true vocations while I was secretly hoping to do the same very soon. This year I’m “finally” (again, not my word) knee deep in the ongoing discernment/vocation process and wondering if it’s possible for one’s head to spontaneously combust.

 

One Word: 2015

This is my 3rd year choosing one word for the year. Why one word? It’s easier than keeping a list of resolutions & failing to keep them (and then feeling like crap because you didn’t keep them). However picking one word isn’t as easy as it sounds. In fact picking a word for this year wasn’t looking too promising but it did come to me.

I can thank Arleen Spenceley, more specifically her 1st book (Chastity Is For Lovers) for the divine inspiration, specifically chapter 3.

Providence

Yeah, I know, what?

Providence (with a capital “P”) is defined as divine guidance or care, God conceived as the power sustaining and guiding human destiny.

My reasoning behind picking Providence as my word, or maybe it picked me, is because I’m going to need Divine Providence and a lot of it this year.

What is it that people say (maybe it was Oprah), if you put it out into the universe it will come to you.

This isn’t going to be one of those words I’ve chosen to live out or live up to (or at least that’s not how I think it’s going to go). Instead I’m putting it out there and hoping it will come to me.

If I’m going to be able to pull off everything that’s on the docket for this year, at least what’s on there so far because I have a funny feeling the schedule is going to fill up even more, I’m going to need a lot of help and maybe a little luck.

I’m not complaining about how busy I’m going to be. I’ve worked hard and waited a long time for this to turn any of it down now that it’s within my reach; although now that it is within my reach it’s daunting, to say the least.

So a little (read: a lot) Divine Providence is in order here.