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.

One Foot

went in front of the other, and then repeated the process.


1 year, 1 month & 1 day after I took my last steps.


I haven’t stopped since.


*A similar version of this post was written on October 11, 2011

World CP Day

Every year I struggle when World CP Day comes along, but to be clear I have no problem with World CP Day in terms of playing a big part in the achievement of a goal. I want more people to know about Cerebral Palsy so being against World CP Day would be counterproductive.

I do find it to be counterproductive, not to mention confusing, that World CP is in the fall and Cerebral Palsy Awareness Month is in March. The CP community needs more community, having a “CP Day” & “CP Month” feels like being forced to choose between friends (or overkill having to commemorate both).

So what is one to do?

Jump on every awareness bandwagon that comes by, at least for now.

So what do I write when I’m hesitant to write?

A lot of CP Vloggers have done a “CP Tag.” Starting a Vlog or even just a few videos was something I was considering. But when you consider my limited track record with videos is roughly 1 hour of recording for 1 minute of usable footage any recording just isn’t in the cards right now, which may seem contradictory given my most recent venture. So you’re just going to have to settle for the written version.

CP Tag
Tag Questions

1) What kind of CP do you have?
I have Spastic Diplegia Cerebral Palsy, which means my CP effects my lower limbs, aka legs.

2) How did you get CP?
I’m not exactly sure; I don’t know if anyone could be, because if we knew the cause wouldn’t there be a cure? I was born prematurely (32 weeks) so there’s a good chance that that played a role.

3) How did you feel about a growing up?
Truthfully I can’t remember. Does that make me old? I knew I was different from everyone else growing up, but the words “Cerebral Palsy” were rarely mentioned. There were times when I didn’t like it and there were times when I didn’t mind it at all, usually it revolved around what class I was being pulled out of for in-school PT and/or OT. My parents (and the rest of my family) tried to keep my life as normal as possible so I wasn’t given much of a chance to feel anything other than normal.

4) How has CP impacted your life (good and bad)?
I can’t really answer this question since I have nothing to compare to on a personal level.

However, CP impacted my life negatively because I was teased endlessly throughout school, particularly middle school. What I didn’t realize then, but I now do, is that I was the easiest to pick on because I was the one who was “most different.” I was perceived to be the “weakest” of the herd, therefore the easiest target. It sucked, but I’ve tried to put that behind me, and what I haven’t I’ve tried to use for positive purposes.

CP has impacted my life for the good because I’ve been given opportunities I wouldn’t have if I didn’t have CP. I wouldn’t have the same career, and certainly not the same vocation.

5) Do you ever think about your life without Cerebral Palsy?
I do, but not in the way people might think. When I find myself in certain situations, like after giving a talk or attending a conference, I catch myself thinking, I wouldn’t be here if I didn’t have Cerebral Palsy, so that’s pretty cool.

6) How was schooling with Cerebral Palsy?
I’ve had horrible and amazing experiences in terms of schooling with Cerebral Palsy, bullying aside. I was in a special education classroom in pre-school (ages 3-4) and then moved to mainstream classrooms (with an aide) for elementary school. I ditched the aide around 1st or 2nd grade (I told her to get lost). I was in public school until 5th grade. I was in private (Catholic) school from 5th-8th grade and received no services or accommodations during that time.

I attended public high school with no additional services or accommodations, other than gym class, because the school is so small; in fact, I often ignored what the administration put in place for me and did my own thing with no objections (and the accommodation for gym was more for my safety related to size rather than ability.

I attended 1 year of public university with one accommodation (a room on a lower floor), which was a big fail, but none of that was on my part what so ever. My last 3 years were spent at a private university with the same housing accommodation and accommodations for note taking. I didn’t think I needed any accommodations at all but thanks to a great relationship with the staff at the Disability Student Services offices I was willing to give their suggestions a try and my college experience was so much better for it.

Now I attend a private post-grad institution through an online program (although I am required to be on campus for part of the summer). I have no accommodations and I don’t foresee needing any in the future (but you never know). Thankfully the school is incredibly small so the community is incredibly accessible and supportive when/if needed by anyone.

7) How has your disability changed throughout your life?
Cerebral Palsy itself does not change over time (or so the people with medical degrees say). However, it does change how it affects your life, at least from my experience.

People with CP tend to age more quickly than our able-bodied counterparts since our muscles work harder (I’ve heard somewhere around 3-5 times harder). We’re also more likely to develop arthritis or osteopenia.

I’ve had less surgery as an adult than I did as a kid but I think that’s mainly because there aren’t a lot of studies on the effectiveness of surgery on older individuals with CP. Also a lot of the surgery I had as a kid was to help direct or redirect the growth process. Let’s not forget that medicine/science has developed a lot in my lifetime so that also plays a role I’m sure.

I can’t exactly say when things changed, nor can I explain how each time. But I can tell you that (for me) when some things get worse other things get better. It doesn’t make any sense but that’s just how things are for me.

8) How will things change for people with disabilities?
I can answer this in two ways, the way I’d like things to change or the way I think things are going.

I think things are changing for people with disabilities, obviously, but I wonder if things are going in a positive (or “right”) direction. The disability community is getting more exposure and being included in mainstream society. There’s rarely a day that goes by that I don’t see an able-bodied person sharing a disability related news item on social media. It’s exposure but is it always good exposure?

For example, the “in disability” right now seems to be Down’s syndrome (particularly during Fashion Week) but every article about someone with DS seems to have the same tone. They’re “beautiful,” “always smiling” and have a “bubbly personality,” but not much else.

What does that say to other people, in particular children, with other disabilities? That they’re not beautiful enough? Or that their personalities aren’t as “bubbly” so people won’t give them the time of day?

Cerebral Palsy isn’t much different when it comes to getting media attention. We all seem to “suffer,” “overcome obstacles.” We sometimes are classified as having a “disease,” which couldn’t be more wrong.

All stories attempt to highlight individuals, however so many of them say nearly the same thing.

Yes, things are changing for people with disabilities and a lot of the change is positive but I fear that much of it is venturing into “inspirational porn” territory and that isn’t the kind of change the disability community is looking for, at least I’m not.

9) Do you believe in God? Does that help you deal with having CP?
Yes I do. I wouldn’t say my belief in God helps me deal with having CP directly, but it does play a role in how I live and see my life (much like having CP does)

10) If there was a pill or cure for CP would you take it?

*A similar version of this post was written on October 7, 2015

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.


Father Jack Morris S.J.

“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

Grad School: The Third Summer

This summer could have easily been titled “the summer of my discontent,” and school commitments played a big part in that, not just because it takes up a substantial portion of my summer either.

I learned a lot from last summer in terms of class logistics. It’s tempting to load up on courses since they’re readily available. But just because you can doesn’t mean you should.

One class a day is enough, because there are plenty of ways to fill your day; formation requirements, exploring campus, meeting people behind the avatars, and studying.

As much information you can get your hands on before class starts is good, but somehow it’s never enough. Thankfully it being my 3rd summer I had enough resources to pull together (read: friends) in the same situation so we made it work.

My days basically went like this:
-Breakfast in bed, literally as I didn’t pay for the meal plan this year, so I had some Netf!ix time then too.
-Back to my room to finish studying

For basically 2 weeks straight.

This was the 1st time I’ve had assignments due during the week other than “just” reading. Honestly I hope it’s also the last time, although that’s highly unlikely, because it made things more difficult. It’s hard to truly learn anything when you’re focused on the oral exam at the end of the week.

I’ve never been a fan of oral exams, like most people, they aren’t any easier as an adult.

I had it in my head that last year would be my “summer of suck” but I feel like I had two of them, for different reasons obviously but the feelings were/are the same.

I’ve never spent so much time in a library, ever. In an odd way I’m proud of how I stuck to much of what I had planned. Usually I say one thing and get caught up in the plans of others, however most of us where in the same classes so that had an effect on things.

I did have time to spend one on one time with a few friends, another benefit of not having the meal plan is that you have to get out of your room (and the library). As much as I have enjoyed having a sole focus for a week (in the past) I think my favorite moments from this summer are ones in which I spend time with classmates outside of class.

Many classmates graduated this past spring so they weren’t with us this summer, at least not physically, so I wondered how that would impact my experience this year. Thankfully, well not really, I was kept busy enough that I didn’t think about what was missing this year compared to previous years.

I also relearned what I love about this school and the community. Although I only spend a few weeks a year with people in person it doesn’t feel that way. It just adds to the feeling of community I have every day (even if some days it does mean being underfed, overtired, and stressed out; at least we’re in it together).

A Girl & A Pair Of Shoes

I do not understand shoe obsessions, I have better luck understanding people who have shoe obsessions, until they start doing anything with shoes.



I hate shopping for shoes more than I hate wearing shoes. I’ve been known to wear shoes much longer than one should simply to avoid the torture of looking for a newer pair. Nevertheless, I make myself attempt to find a new pair every year (usually during tax-free week, just to take some of the sting out of it).

I’d rather be doing anything else on this particular day, still I rolled into the store hoping that just maybe I’d find a pair of shoes without much emotional distress, but I see at least two sales associates I don’t particularly like so I duck into an aisle and start pulling any pair in my size.

Suddenly there was a sales associate standing three feet from me.

“Those are 860s. Those are great shoes. I didn’t mean to overhear your conversation.”

At this point I’m looking down at my feet wondering how on earth she knew what shoes I was wearing based on sight, especially since they were on my feet and I couldn’t find the number printed on the side.

 “If that’s what you’re looking for I can try to find them for you.”

I didn’t like the shoes I had on, but they had a few things working in their favor, they weren’t painful their first second they were on my feet, they fit both of my feet, they still fit without much wear and tear or any deconstruction.

“We keep the smaller sizes in the back. What size do you need?”

I’ve been through this song and dance before so I tell her what I need and continue my own search.

“Are these OK?” she says holing open a box which I look upon with skepticism.

Footwear viability has to pass three phases for me:
-Can I get them on my feet?
-Can I tie them without discomfort?
-Can I walk in them?

The first phase may seem silly but you’d be surprised how quickly a pair of shoes gets a failing grade.

“We’ll have to see if they fit to answer that.”

I make my way to the nearest bench, conveniently out of the eye line of the other sales people and most customers, and proceed to “take apart” one shoe fully expecting the sales associate to voice an objection under the camouflaged as help or left to help someone who actually seemed to need it.

Instead she picks up the other shoe removes the insole and precedes to re-lace the shoe in the same way I had before handing it to me, without making a single comment.

I cautiously put on the right shoe, because if the right shoe doesn’t work there’s no point. Then the left.

Somehow, somewhat miraculously, they fit.

I got a pair of shoes that day, that will probably last until next year, when I repeat this process (and I’m already dreading it).

It’s highly unlikely that the right pair of shoes will help me change the world but a sales person who spends most of her week with shoes changed my experience, even if it might be just once (although I hope it’s not).

Becoming A Road Map

Since swimming reentered my life I can’t get enough of it, so much so that I spend far more time thinking about swimming than anything else. The first thing I plan to pack on any trip is a drag suit & pull buoy, just in case there’s a pool nearby.

A visit to my aunt’s place in the dead of winter was no exception, except winter in Florida is like summer in New England. Plus, she lives within walking distance of multiple pools, and we’re not expected to clean a single one, ever. So being asked, “Would you like to go to the pool?” has me in a suit and out the door as fast as my coordination allows.

I learned to swim in her backyard pool (& almost drowned a few times) as a kid so she’s used to my unorthodox methods of navigating in and around a pool. Rarely does she ask if I need help, in fact she rarely says anything, probably knowing how much joy I get from the water.

“You look like a roadmap.”

It’s hard to hide anything physical in a swimsuit. So you can see each and every one of my surgical scars.

The nearly 30-year-old SDR incision is well healed, but still one of my most noticeable scars. The bilateral scars on both sides of my legs from the tendon transfers, that at one point during my Catholic school days, doubled as dress code marker since skirts could be no more than 2 inches above the knee. Then there are the most recent scars that run along my outer thighs that look similar yet distinctly different from each other, proof that a surgeon does have a trademark style of closing an incision. Everything down to the scar tissue that marks where surgical probes were inserted during who-knows-which surgery that gave surgeons information they needed.

It’s not unusual for me to try and hide at least a few of my scars, especially for formal occasions. I want (and would rather) people look at me because I look good, not because they’re wondering why I have 2-foot-long scar along my spine.

I don’t care about any of that, 99.9% of the time, particularly when I’m in a swim suit. My concern is following that black lane on the bottom of the pool, as many times as I can, as fast as I can.

I care more about executing turns and streamlined body positioning than if anyone is wondering about any (or all of) of my scars.

I do look like a roadmap. A roadmap that only tells portions of roads I’ve traveled. In reality they’re just visuals left up to interpretation. I’m sure people see me around the pool and feel pity, or sadness, or courage, or a sense of inspiration. I have no idea. Honestly I think I’d rather not know what people think of me.

I know what I need to know, that without these scars that have made me look like a human roadmap I wouldn’t be doing what I’m doing. I wouldn’t have returned to the pool or found a sense of freedom I’ve missed out on in the not so distant past.

I’ve been asked why I would want to “destroy” parts of myself when I’m perfectly healthy. It’s a legitimate question but the same people who ask such questions don’t know the need for the so called “destruction”.

Each scar was created with the hope of a better future, and in the process I’ve been created to be a map with no known final destination.

It’s like the movies where the main character is given half of a treasure map and needs to find the other half before the story can be completed.

Preparation + Opportunity = Luck

I’ve been spending far too much time watching the Olympics (like most of the 1st world, I suspect) and I’ll keep doing so until the Paralympic closing ceremonies.

(For those of you with Olympic fever and wished the games would last longer, they in fact do, the Paralympics just aren’t on TV as much).

With the Olympics comes a lot of discussion about what it takes to be an Olympian. I think anyone who is an Olympian will tell you that although the destination is the same, the paths can be different. That’s also what draws people to the Olympics (I think), the stories that the athletes have. I still remember hearing about a swimmer who had some kind of respiratory condition that was like the equivalent of an average person breathing through a straw, and he was a world class athlete.

I remember thinking, if he could be who is and do what he does than I have a chance too.

I don’t remember his name so I have no idea what happened to him, but he still comes to my mind on occasion.

The philosopher Seneca said, “Luck is what happens when preparation meets opportunity.”

This has become my philosophy on athletes, especially world class and unknown ones.

People can argue that blessings can get you anywhere you’re meant to be in life but that’s like saying wishing a flight of stairs would turn into an elevator and having it actually happen.

Blessings are great and they do have their place but no amount of blessing is going to make it possible for you to win a gold medal without some amount of training beforehand.

For example, as much as I want to be a world class athlete I have yet to be “blessed” with the resources to even be able to a serious recreational swimmer. But I have been damn lucky and chased every potential opportunity I can come across. I’m not where I want to be but I am putting forth the effort in the unlikely event that one day enough opportunities align themselves to make things a little easier.

It’s nice to call someone blessed but that can downplay the hard work and dedication that goes into achievement. It’s like calling someone an “overnight success” when they’ve been working towards their success for countless years.

Just because you haven’t seen the blood, sweat, and tears, doesn’t mean they didn’t (and don’t) exist.

God is great and everything and unbelievable blessings do happen but not as often as people like to think (not unlike other things in life).

Luck and blessings are real but rarely do they ever come alone. Instead they come mixed in with blood, sweat, tears, disappointment, hard work, early mornings, late nights, busy schedules, sacrifice, and a host of other things you don’t catch on camera.

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.