Just another day

hmmm…I’m beginning to believe my meds aren’t working as well anymore.  Starting to get the whole instant depression & anxiety thing more often…kind of sucks.

Anyways, onto more things.  This past Saturday, I went over to Brewer to Alpha One’s ability expo.  Basically, it’s to do demos of a few physical activities (Quad Rugby, their Youth in Motion program that gives kids the opportunity to play games like baseball, capture the flag, etc…  as well as (in theory) some wheelchair basketball.  By the time it got to the basketball portion, why I was more or less there, it was totally unorganized and we just shot around for a while…not doing a demo or anything.  I guess I’m to blame as much as anyone else is, though…I didn’t speak up to try and set something up, either.  Oh well, sh*t happens.  At the ability expo they also had booths from Alpha One, an organization that sets up modifications in cars that people with disabilities may need, such as hand controls, a representative from the Bangor Bog Walk promoting its physical accessibility, and someone from Maine Adaptive Sports & Recreation that had some hand cycles for people to try out.  Well, I tried out one of their cycles and loved it.  To be honest, I’m starting to get sick of the lack of direction in the basketball program and I want something else to do, and I think cycling would be a great individual sport to get into.  I’m currently looking into various forms of funding sources to get a hand cycle (they’re $3,000+ and I just can’t afford any part of that).  I’ve got it stuck in my head that I really want one, even though I have no idea how to store or transport it from place to place.  They also had a rig set up that allows quads to shoot a gun, basically it’s a mount with a gun on it with a small monitor that shows what’s in the scope and a straw you blow into to fire the weapon.  There weren’t live rounds, of course…it was basically an air gun.

On another note, I’m almost down to 150 pounds without my leg braces on.  While this is a great thing, it causes issues with how my braces fit so I have to go get them either adjusted if they can, or re-made next week and to stay off my feet as much as possible until then.  My lower legs hurt like hell after a full day on them as of now.

This Friday night, I’m going to the Mass Chaos Tour concert in Bangor (Godsmack, Staind, Hellyeah, and Brook Royal).  Pretty excited to see Godsmack again and I really want to see Hellyeah.

Anyways, I guess that’s about it for now.  I’ll try and post more often, at least when I have something to say.

 

some things depressing, some things not

So..I realized I’d been neglecting my blog so I thought I’d post an update, even though I’m pretty sure not many people actually care or read it.

So…the whole depression thing sucks, y’know..in the lows anyway.  The rest of the time I can more or less tolerate the outside world.  I’ve also been getting headaches toward the end of the day before I take my 2nd dose of my meds..that could be apart of it I s’pose.  My doctors office is being a slow pain in the !@#$ing ass about getting me referred to an anger management group (Which I need)…which creates a paradox if you think about it.

I’ve got a couple of fun things coming up in May.  On the 12th from 10a-3p I’ll be over at the brewer auditorium for their annual adaptive equipment/mobility fair.  I’ll mainly be there to meet people and participate in the basketball demo/demos, maybe try out some stuff (hand cycles etc) depending on what’s going on…I got to try out an air rifle last year.

Also, on the 18th Godsmack, Staind, HellYeah, and Brook Royal are coming to the waterfront and I’m attending that. It’ll be my second time seeing Godsmack live and I’m excited to see HellYeah (Vinnie Paul Abbott’s their drummer, formerly of Pantera).  Should they have an autograph session I’m going to try and attend that as well, transportation willing.

I’ve also started to actively use the 35mm camera my grandfather gave me a few years ago (Canon AE-1 Program).  I’ve used three rolls of film.  1) Ruined it putting it into the camera.  2) Didn’t load it properly, took the whole roll, went to get it developed and it came out completely gray, every shot..overexposed  3) At a local photo shop for developing, picking it up tomorrow, and really hoping it comes out so I know the camera at least works.  I want a decent digital SLR camera but those are $500+ and that’s for a *low* end one.  It’s nice to find one more thing that gives me joy in life.  Gives me another reason to get up in the morning, and it’s also expressing my ‘artsy fartsy’ side, which not many know about.  I’m very critical of my own photography work, to the point where I think I’m a perfectionist.  I don’t care if other people don’t like the way I’ve composed a photo really…if it came out the way I intended it to, perfectly, then I’m happy with it.    Anyways…best to probably finish this up before I depress or confuse myself anymore.  I’m probably staying up for a little bit, as I’m going to be out until midnight or later tomorrow night.

On a total side note, how do you get more followers/readers on a blog?  I’ve tried tagging properly and getting it out there on twitter and such.

 

Youth in Motion program

I went to the local Youth in Motion program this month two days ago…it was good to see everybody again, and test the arm to see what it can do.  What I found? Not as much as I wanted it to do.  I’ve got every day type range of motion but when I work it hard, I feel it still.  I’m also still hoping WABI puts up the story from the Husson University event so I can post that up.

oh yeah, and I’m engaged once again (same girl).  That’s the only updates, but I thought it was worth posting.

 

Injured

So…I know I said I was going to try and record some video with my cell phone from my basketball event at Husson University.  I ended up not really being able to.  I’d planned on starting after our first game (double-elimination format) but about 2 or 3 minutes into it, I pretty badly strained my bicep in my shooting arm, so after that game I was more or less icing it the whole time.  A local news station was there shooting some video though so hopefully I’ll be able to link to that eventually once it airs.  This evening I started to not feel that well..think I might have the stomach bug that’s going around.  Hope not, I don’t need that on top of the trip to the E.R. on Saturday to make sure I didn’t tear my bicep

 

Sports and Other Stuff

Ok, so I had this post I was going to make all made up in my mind…and I’ve decided to totally push it to the wayside for another time, about my conflicted views on spirituality and related things (note I did not say religion).  

 

Anyway, not too much is different since the last time I posted.  I do have a wheelchair basketball event coming up on Saturday from noon to 4pm at Husson University (http://bangordailynews.com/2012/03/28/news/bangor/wheelchair-basketball-on-tap-at-husson/).  It’ll be the first time I’ve played since…well..last year’s event.  Hopefully all goes well and my old body can still ball.  This years is the 14th annual, and I’d been playing for a few years before the event started.  I’m planning on taking my phone and doing some video of some of the other teams playing and uploading it to either here or youtube, so that should be fun.

Speaking of taking pictures and video, I dug out the circa 1980 camera my grandfather gave me a few years ago and put some new film and a new battery in both it and the external flash unit.  Hoping to get out and use that a little if the weather gets nice.  Photography is my only “artsy” side, really.  At least in the traditional sense.  It’s a Cannon AE-1 Program (http://en.wikipedia.org/wiki/Canon_AE-1_Program).  I’d LOVE to be able to really get into photography again and buy a new fancy Digital SLR and all a telephoto lens and such but that gets really expensive.  A few grand, easily if you include the camera body itself.  Anyways, I love shooting black and white shots so I plan on buying a few rolls of b&w film at some point if this color roll I’ve got in it comes out decent.  

 

well, I guess that’s about it.  Until next time…

 

The power of music and other updates

I hadn’t planned on writing tonight, but after what I just experienced I have to.

Ok, so I’m just sitting here at the computer playing a racing sim type game with my Kindle Fire playing one of my Pandora stations beside me and in order, I had three tracks come up in a row that left me, to say the least, emotionally drained and numb.  I mean…it’s not a bad thing, sometimes you need to just let go and have that release.  I’ve never really experienced such a thing before so I thought I’d share.  Anyways, here’s the three:

http://www.youtube.com/watch?v=9fmkQg77m0o

Let it be known right here and now that I think Sully Erna’s “Avalon” album is one of the greatest albums ever released.  Every track on it is amazing.  The cello solo in this song is just mind numbingly powerful to me, it gives me chills every time I hear it…it’s as close to vocalizing as an instrument can get.

http://www.youtube.com/watch?v=JxPj3GAYYZ0

The fact that this masterpiece exists is just heart-wrenching if you know the story behind it.  Eric Clapton’s son, Conor, fell to his death from a 53rd story apartment window at age 4 1/2.  More details on this one can be read here.

http://www.youtube.com/watch?v=RMTKb-pgxGI

This great one was basically Warren Zevon’s departing gift to the world.  He was diagnosed with a form of cancer, refused treatment, and wrote his final album called “The Wind” instead.  The album was released in August and he died in September of the same year.

Edit after posting: I don’t know why the videos won’t embed, maybe because I have too many on here.  Just click the links

Anyways, to keep at least semi on-topic, I’ve decided that I no longer enjoy having to pay cab fare to all my medical appointments, so I’m looking harder into other public transportation options for people with disabilities.  There is one that’s readily available that I know about, but they won’t come down my street (they go by the end, and I live within a quarter mile of that end at most) but because the public bus route is too close.  Better yet, they do offer a monthly bus pass for free, but you can *only* get one if you’ve missed three consecutive appointments in the calendar month.  Quite a heaping, stinking load of BS isn’t it?

Oh, one more thing I almost forgot about.  After doing a little more spinal cord research on my own and talking to my primary care doctor, he said he would refer me to a neurologist to talk about possibilities of giving me back feeling in certain areas of my body, directly through work on the spinal cord itself.  Where they can and where they can’t or what it involves, I don’t know yet…but rest assured I’ll be posting if I end up going under the knife.

And with that, I’m off to bed.

 

Small update

So…while I wait until 130am or so for the aurora from the solar flare that I hope I can see, I thought id blog a bit. 

My doc was pleased that I’ve lost a little weight, but the downside is that my braces don’t fit quite right so I have to get those adjusted and see a foot doctor about the callus on my foot.
While at the docs, they also told me about some interesting medical/surgical advancements id not known about.  Apparently they can go straight into the spine and restore
sensation to certain areas in certain circumstances.  I asked for a referral to a neurologist for some more information.  If its safe and the recovery wouldn’t be too horrible (and I could stay local) id probably do it.  Of course I’m going to do my own research in the interim. 

If I’m able to get any video or pictures of the flare/aurora i’ll be sure to post them here.

Oh yeah, if anyone local happens to see this I have a wheelchair basketball event scheduled for march 31 from noon to 4pm at husson university in Bangor.

 

Me on the Internet

This video is from the 2011 Ability Expo, put on by Alpha One in Brewer, ME. I’m the guy in the red at the very beginning holding the basketball over my head and again at 1:19 moving down the court in a game (basically a capture the flag variant) run by the Youth in Motion program, run through Alpha One. I’ve lost a few pounds since this event, luckily. This video actually also gives a good view of my customized basketball wheelchair.

I also found another picture of me in my sports chair, it’s a little older (2009) but still works. http://bangordailynews.com/community/11th-annual-wheelchair-basketball-tourney/ I’m in the first photo in the ones down toward the bottom, #18. Actually, we have that same event (14th annual, I believe) coming up later on this month.

 

My KAFO’s (otherwise known as leg braces)

These are my KAFO’s (knee ankle foot orthosis) otherwise known as my leg braces, in case anyone out there in the blogosphere was curious. The little white things on the insides were put there because at one time or another they didn’t fit right in those spots. And when they don’t fit right, they cause sores on my legs that take forever to heal. The things that are covering what would be where my knees would go are just that, covers for the knee joints. If I didn’t have those, I’d have to buy pants a lot more often (holes). The beauty of it is the straps, pads under the straps, and the knee joint covers are removable and washable in a regular washing machine. In a normal given day, I’m in these from when I get up and get dressed to when I go to bed. Sometimes I do use a wheelchair for longer distances, but I’m trying to not do that as much as I’m starting to lose weight, and I’d like to continue to do so

Is there anything else anyone out there can think of they’d like to see a picture of or video of, related to me or my disability…or perhaps even not related?

 

Nerves and NASCAR

Soooo…I know I haven’t posted in a while, sorry about that.  I’ve been busy. Wow, I just realized by looking at my previous posts that apparently I’m fond of late-night blogging.  It’s when the ideas flow and come together. Anyways…I have a few topics for tonight, one related to disability and the rest not.

I’ll start right off with the one that’s directly related to what this blog is about, disability.  After a few of my peers found out I was going away with my girlfriend for the weekend after Valentines Day, the ones that don’t know all that much about me medically asked me some pretty..interesting questions.  The most popular, as it relates to having a disability, is basically “does it work?” (referring to my reproductive parts).  Now, I’ve been getting this question for quite a few years now, and depending on the audience, I vary the complexity of my answer, or choose to not answer at all.   As with any (well, most) sort/s of spinal cord injury case, certain things in my body work and I can feel, certain areas I can’t feel nor have function in, and certain areas work, but I have little to no sensation in.   When people ask me “what’s it like not to be able to feel your (usually) feet?”  My answer is always the same: “What’s it like to be able to feel them? I wouldn’t know”.  This topic is actually one of the hardest for the Able-Bodied population to understand, it seems.  Sure, you can put them in a wheelchair or leg braces or something for a day and see what that’s like, and you can make it so they cannot use a part of their body for a period of time (like not cheating when using the chair) but you can’t really make someone not feel a part of their body at all for an extended period of time.  Speaking of braces, I just realized I have a picture I took a while back of my current leg braces sitting on my Twitpic space.  Enjoy.

notice how I didn’t actually say what my situation is as it relates, directly? I’m good like that But if i’m asked, I’ll probably answer.

Ok, second topic (non-disability related): NASCAR.  I’m a big NASCAR fan (Mark Martin is my favorite driver in Sprint Cup).  This last month or so has been exciting with Preseason Thunder, the Budweiser Shootout, Qualifying, the Twin 150′s, and the Camping World Truck Series race tonight.  I was quite surprised to see that Danica Patrick got the pole for the Nationwide race the day after she took one hell of a hit into the inside wall the day before in the Twin 150′s (seen here but please do come back after watching).  Anyways, lets skip to the Truck Race tonight.  WHAT A RACE!.  I wish they could somehow put the same package under the Cup cars and let them go with that style of racing.  There were a couple of very hard hits in this race, too.  One by Miguel Paludo and one at the very end by Joey Coulter.  I can’t wait until the Nationwide race tomorrow and of course the biggest day in racing, the Daytona 500, on Sunday.

Oh, one more thing.  It’s snowing!  I know..I live in Maine, so it shouldn’t be surprising, but we’ve had a rather strange and unseasonably warm winter.  By the way, pushing a wheelchair through 2 to 3 foot snow sucks.  Been there, done that.

Until next time….