When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014


Why I: Am Choosing The Back Burner

I’ve been joking for a while that anyone who’s actually following my blog is watching its slow demise.

Honestly, I feel like I’m stringing people along instead of just making a decision (NOTE: if my intuition is correct tell me, especially if you have any strong opinions either way).

Here’s the truth, I’m really enjoying school. Like, if I have any free time at all I want to spend time working on assignments, at least 90% of the time anyway. Why bother putting off “little” assignments that you can get done pretty easily, if you had the time.

The exception being major papers, midterms, and finals, I’m not that far gone. And does anyone really look forward to that stuff?

If it were up to me I’d go to school full time and continue to freelance, because that’s been awesome too. Plus, my advisor, professors, and formation director are fully aware of my goals and more than ready and willing to support my simultaneous pursuits.

It’s a great ideal but it’s just that, my ideal. I have to work in order to make the rest of this work.

It’s a lot to fit in in any given day, but I’ve been able to make it work. In fact, my time management skills have improved greatly (although there is still plenty of room left to grow). So it’s not that I don’t have the time. I could make the time for something if I made it more of a priority.

Here’s the thing, my blog and who I am as a blogger needs to shift or maybe transition would be a better word. I’ve shifted topics from here to there and back again, so that’s not new to me. But I’m not getting the feeling that “Keep Calm & Blog On” is the approach I should take here.

I don’t want to stop blogging. That doesn’t feel right either. I would just be leaving a bigger gap where I’ve tried to fill a void. Nor do I want to overfill the void by telling you everything that’s been filling up my life and how it relates to having CP. I’d rather share the soapbox, if I have to stand on one at all.

So, I need to figure out what I’m doing here and more importantly why, at least when it comes to blogging.

Ideally, and I think what I’m heading towards, is more of an integration of all of my projects. Just how to go about that, if that’s really what’s meant to happen, is the challenge here.

But there’s one thing I have to do first, step back and think.

I’m choosing the back burner, because it feels right.

*A similar version of this post was published on December 30, 2014

If I Had A Superpower

I’m not a “super hero person” (a good portion of CNMC people just hung their heads in shame on my behalf), although I am a Batman fan, but that’s about it.

I’m not one to lay awake at night and think about the possibilities of super powers and what I would do if I had one.

BUT if I had to decide on a superpower it would be Bilocation (the ultimate Catholic superpower).

At first I thought mind reading would be a GREAT superpower but I think knowing other people’s thought all the time would make me a basket case so I’d much rather settle for something more useful (relatively speaking, of course).

I’d really like to be able to be in two places at once (sometimes three).

I have 3 jobs.

1 that pays the bills, 1 that I hope will pay the bills eventually so I can quit the other job, and grad school.

It’s all far more than I bargained for (and yet I have another project in mind which could mean 4 jobs). But I don’t see “dropping” one as an option. It’s possible, but not preferable so I won’t be quitting any of it any time soon, unless something drastic and amazing happens.

As much as I have going on I could always do more; which is why bi-locating would be so helpful.

Not to mention that I wouldn’t have to book any more flights or navigate a new airport in a wheelchair (as fun as those processes are).

I wouldn’t have to worry about planning my life around homework, or I could sleep and do homework at the same time. How awesome would that be? It’s pretty much my ideal right now.

It would also be nice to be able to attend classes on campus (instead of online) without having to pick up and move. I’d probably feel like I was doing better in class too, so far I’m doing well, but something’s just not clicking for me. And to think I used to envy online learners, excuse me while I pry my foot out of my mouth.

I would also be able to take part in more “career growing” related activities; thus eliminating the need for that 1st job that pays the bills.

Come to think of it I would have the time (& money) to be in school full time; thus giving myself an actual projected graduation date. How nice would that be?

If I were able to bi-locate I could probably stop wishing for that 8th day of the week too.

Maybe having a superpower wouldn’t be so bad after all……..

*A similar version of this post was written on April 5, 2014

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Working In A Wheelchair

I had another steroid injection a few weeks ago, which was followed by activity restrictions, all I’ll say about that is that is it’s worse than the injection itself. You wouldn’t think that would be the case given that I’m a wheelchair user, but the truth is it’s rare that I use my wheelchair on a daily basis. I don’t use it at work, mainly because the building isn’t accessible.

Let me back up: I have used my wheelchair at work in the past so I have an idea of what works and what doesn’t but it was years ago and with employee turnover it was going to feel like the 1st day of school, which I did not account for. What I thought would be a no brainer actually required thought, at times more than it should.

I decided to bring my wheelchair with me to work, here’s what happened.

In a lot of ways it was easier to get around (and easier to explain why I couldn’t do something). The work days didn’t suck, at least not any more than they would usually. However, there were moments of pure frustration.

-I was able to complete some tasks in a fraction of the time I can do on my feet.

-I can do these same tasks faster than my coworkers.

-I’m on a different level, which is good and bad.

-It’s harder to reach the phone.

-Computers are at the wrong level, unless I want to practice typing with my chin (or my tongue).

-People worried I had a “setback” or “regressing” (for the record CP itself does not change like MS).

-People thought I was ill.

-People wouldn’t talk to me, instead they’d talk over me, literally.

-People made an extra effort to speak with me.

-I backed over one person’s foot.

-People thought I’d deliberately run into them (prior to the foot incident).

-I got asked “Do you have a license for that thing?” so many times I got annoyed with being annoyed by the question.

-My hip was really sore by the end of the day, but my back didn’t hurt.

I wish I could tell you I learned something new and more importantly profound about the whole experience but it just affirmed what I already know because I’ve already experienced it before; the difference being this was in a microcosm of society.

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

The Matter Of Disclosure

What if you can’t keep your disability a secret (or what if you don’t feel comfortable doing so)? When should you disclose that you have a disability and how?

It can be challenging, but not impossible.

I’m no disclosure expert but I do have thoughts on the subject. Thanks to a few personal experiences, both positive and negative.

I feel compelled to reiterate that these are my personal thoughts and I do not claim to represent anyone other than myself.

There are two questions you should ask yourself when it comes to disclosure. The first is: should I disclose my disability?

If you can answer “no” then you can stop reading and go on with your day. Just think about what the consequences of that “no” could entail. Question 1.2: Are you comfortable with the potential consequences? If your answer is still “no” then, have a nice day.

If your answer to the first question is “yes” then proceed to the next question which is: when (or how) should I disclose?

School: I’ve done both so obviously I’ve seen the positives and negatives of both sides fist hand. The most important thing to know is there are rules/laws out there that can help or hurt you at every stage. Know them before hand, even if using them isn’t part of your plan, because they may have to become part of the plan.

Speaking strictly about college (because I completed basic education in the dark ages) the important thing to remember is services are available but it’s up to you to ask for them (and then make the effort to get them). No one is going to come to you and ask you if you need additional assistance or resources. You’re considered to be an adult so they’re going to treat you like one. One of the biggest benefits to college is that you can have more control over who you disclose to. You can disclose as much or as little as you want as well. But again, make sure you’ve thought about the consequences to not disclosing as much as disclosing.

My suggestion is that you disclose to the disability services office and develop a relationship with them. They can be in your corner regardless of whether or not you disclose to individual professors (which I have both done and not done as well).

Work: Do as much research as you can before you accept a position. You need to be confident that you’re the best person for the job before you can expect others to see you in the same light. I’ve not disclosed my disability more than I’ve disclosed it in the workplace but it’s pretty obvious that I have limitations. You’d have to be blind to not pick up on it. In the workplace I think it’s more important how and when you disclose rather than the actual disclosure. If you bring it up in the interview process be cleaver and casual about it.

Point out what you bring to the table more than the potential barriers; which is basically the same advice you’d give an able-bodied person (I love when life works out like that).

Dating/Relationships: Admittedly this isn’t my most favorite subject but it’s a common occurrence in everyday life so I’ll bite the bullet.

My advice for disclosing while dating or looking to date is similar to my workplace advice. It’s more a matter of how and when you disclose rather than if you should or shouldn’t.

If you’re looking to meet someone online then keep things close to the vest for a while. If you blast it all over your profile then you’ll probably turn people off, or worse attract nothing but creepers and devotees. My only exception to this rule is when it comes to profile pictures; if you feel comfortable showing off your wheelchair or other assistive device in a picture than go for it. In fact it can, for lack of a better term, take some of the disclosure pressure off of you; if they have questions than you can answer them without worrying about whether you’ll scare them off or not.

If you’re planning on meeting in person and you haven’t disclosed then it would be a good idea to say something before meeting, especially if you can’t really hide your disability. You don’t want to seem shady for keeping secrets (from the other person’s prospective). One you’ve met face to face you can disclose as much or as little as you want, just be open to their questions.

If you’re meeting in real life as opposed to online then trust your instincts, as you would at the beginning of any other relationship.

As for disclosing to friends, very few of my friends knew of my textbook diagnosis until I became more involved in the disability community and advocacy, which is a pretty recent development given the length of some friendships. It wasn’t really something I was hiding. The fact that I’m not the same as they are physically is pretty obvious so I can’t exactly hide it, even if I wanted to; if they asked me what my disability was or if it was somehow relevant to group conversation than I said it.

The most important thing to remember about disclosure is that there is no one size fits all answer. Ask for advice because there’s always going to be someone who’s been there before you, but when it comes down to it you just need to listen to your gut. And if someone’s not going to like you (or whatever else) based on your disability then turn around and walk right out the door. You’re better off without people like that in your life no matter the circumstance.

*A similar version of this post was published previously on June 6, 2014