Email Subscription Gadget

Some might have discovered this already, but for those who haven't I just wanted to quickly mention that I added an email subscription gadget to this blog. It's located about halfway down the page on the right side just under the labels section. How that should work is that once you submit your email address you automatically get an email notification every time I put up a new blog post. It should make it more convenient for those who are interested in following my musings from post to post. FYI you can also subscribe to this blog via feeds (e.g. RSS) but don't ask me how that works. Cheers.

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

I came across the picture below via one of my Google Alerts on accessible parking. Apparently, this is how the rodeo grounds in Wickenberg, AZ designate handicapped accessible parking spaces. Looking at that picture I can't help but wonder if they trace out the universal symbol of access (i.e. the wheelchair outline) and/or the rectangular striped access zone in the dirt with sticks. The other eyebrow raising issue is the sign's use of the word "handicap," which in the disability world is no longer PC and even borderline offensive to people with disabilities (the word accessible has recently taken the place of both handicap and handicapped as the proper applicable disability phraseology). Stay classy, Wickenberg, AZ rodeo grounds, stay classy.

New Mobility Article on Osteoporosis and SCI

For the last few years I've been a subscriber of New Mobility, which is a magazine that covers numerous aspects of the lifestyle of wheelchair users. I've actually subscribed to this particular magazine on two separate occasions over the past thirteen years. The first time was back in 1996 when I was provided with a complimentary one year subscription from Craig Hospital upon my discharge from rehab. But I hardly ever read it back then. That was even despite my parent's best efforts at getting me to do so at times. My mom repeatedly mentioned how much she enjoyed reading about all of the various disability issues. The implication being that if she, an able-bodied person, enjoyed reading it so much that I certainly would too. And just about every time my dad was on his way to recycle the magazines with the newspapers he would stop by my room and ask me if I wanted to read the latest issue of NM before he tossed it out. Then even after I said "no" he tended to linger with the magazine outstretched in my direction as if to say, "Are you sure? This is why we have the subscription."

At the time I'm sure they figured that flipping through the magazine, which is filled with plenty of insight and useful information about disabilities, might help me adjust to my new lifestyle a little more. But my lack of desire to check out NM back then was pretty unwavering. My rationale was along the lines of "I live the disability lifestyle as it is, so why would I want to read about things I deal with every day already?" The thought of it was kind of a bummer. Looking back I now realize that my ignorance towards reading NM was just a part of the early mental/emotional recovery of learning to live with a spinal cord injury. I was exhibiting willful indifference. In other words, in a small way reading NM and about other people's adventures with SCI made mine very real. And although I started to deal with my situation with a very realistic and healthy manner from the start, in a small way being presented with that magazine each month signified something about my life that I didn't want to be entirely real yet.

Ultimately, my parents quit renewing the subscription for NM because it was pretty much a waste of money since I wasn't reading it. But flash forward to recent history and out of the blue one day I went to the website and ordered a subscription. First, I'm obviously much more adjusted and accepting of my situation and have reached a point where everything that NM is about is a welcome read. Second, I have aspirations of practicing disability law as my primary career focus, so some short time after I became a licensed attorney I saw the magazine as another way to stay in touch with every day issues of people with disabilities, accessibility, and disability rights. And third, me and two good friends in the greater Minneapolis region are starting up a Minnesota chapter of the National Spinal Cord Injury Association (http://www.spinalcord.org/), and I saw NM as a good resource for disability related products and services that we might want to incorporate into our own chapter's resource center. So it all came full circle with New Mobility.

That's why I found it so interesting that the December issue of NM features an article about the relationship between spinal cord injuries and osteoporosis. Most interesting of course because I discovered this article just a few days after I wrapped up my own four part blog post about finding out that I have severe osteoporosis due to living with SCI for over thirteen years. Sort of makes me wonder if I either have a little Nostradamus in me or if my apartment is bugged. Regardless, it's good to see that a well read nationally published disability magazine has taken the initiative to discuss a lost in the mix health issue that affects so many people with SCI without them even realizing it. For those interested the article can be found here.

A few noteworthy things about this article from my perspective: 1) It says that until recently the dangers posed by osteoporosis for people with disabilities was an afterthought, so there are probably tons of people like me over the years who were surprised when they got the same medical diagnosis. 2) Really fragile bones (loss of 50% or more of BMD) can break simply by rolling or stretching. That made me cringe because I roll to sleep on my side and to get dressed as well as stretch my legs in bed every day. Hopefully, mine never become "fragile." 3) The bone loss with paralysis is surprisingly quite rapid. The average male paraplegic loses 25% bone mineral density in the first one and a half years post-injury. 4) There are supposedly no proven treatments for osteoporosis in people with spinal cord injuries, but taking daily doses of calcium and vitamin D helps best for now. As for other tidbits, the article cites a few gnarly anecdotes about how a few people with osteoporosis broke their lower limbs, as well as emphasizes good body positioning and secure transfers in and out of the wheelchair.

Beware the Rehab Doc Part III.B. (Bringing it All Home)

Picking right up where I left off last time: When I left the rehab doctor’s office there was no question that I would head straight to the Target pharmacy to get my new octogenarian pills. Since the bone mineral density rebuilding process is seemingly at the mercy of my new meds, I wanted to kick things off as soon as possible. On the way there I had some quiet time to reflect on the appointment and let it all sink in a little more. It didn’t take too long for shock to turn into a bit of anger. Not anger over the situation mind you, but anger towards every doctor I've had up until now that never suggested doing a bone mineral density scan or prescribing me something to stave off bone loss. The doctors that I had in Eau Claire were mostly family physicians, and thereby not too experienced with all things spinal cord injury related, but they surely dealt with osteoporosis patients on a frequent basis. Common sense plus a little extra research might have revealed that it would be a good idea for a patient living with paralysis to have a hip bone scan, even if there never was anything at the time that pointed towards me having any bone density reduction. But most of my disappointment lies with the doctor I’ve been seeing in the cities for the past five plus years because he has over thirty years of experience in dealing with patients with SCI. That’s the main reason why I was referred to him. Thus I feel strongly that he should have known better about getting on this issue earlier. Although according to my new rehab doctor had we caught it earlier I still would have ultimately headed down this path of BMD breakdown due to the natural progression of living with an SCI. But even so, the bone density re-buildup process would already have commenced on account of starting the same prescription therapy years earlier. That’s the part that really bugs me.

While I waited for the prescriptions to get filled I found myself mindlessly sitting in that pharmacy aisle with the fish oil, flaxseed oil, slow dissolving iron tablets, over the counter osteoporosis related pills, and the other weird-ass meds that I swear I’ve never seen anyone ever shop for. Were these “old” pills next? The whole thirty-year-old-with-granny-hips thing still didn’t make sense considering that I was in the prime years of my life, had always taken good care of my body, and for the most part been the epitome of health, despite living with significant paralysis. Hard to wrap one’s mind around. But it’s just another one of the hidden and unknown aspects about living with SCI. Live and learn.

When I was leaving Target I immediately had two follow up thoughts about my appointment: First, we never even discussed the possibility of me using the FES bike, which was the whole reason I went through all that bone mineral density scan nonsense in the first place. But I think the overriding, unspoken implication was that my now considerably weakened hips were far from a good candidate for the FES, at least not until I build back up some more bone mass. Even then I doubt I’d be brave enough to try it out at any point in the future anyway.

Second, I wondered how it would affect having sex. And for the record yes quadriplegics can still have sex, with a few different intricacies here and there, just fine in many cases. Not that such an act has been anywhere near an issue for me for a much longer period of time in my life than I care to honestly admit to the blogosphere, but wouldn’t it be just my luck to finally land the smart, fun, beautiful, cool, open minded girl that I’ve been waiting years for and end up snapping a hip bone because we got a little too frisky, if not downright raucously amorous, one night. Granted, it would be a helluva a way to break a bone, and I’d no doubt be smiling all the way to the ER, but in all seriousness it’s possible that the physical consequences could ultimately be dire.

To wit, if I was to ever suffer a hip fracture it’s highly realistic that any or all of the following could occur: 1) An ambulance ride to the ER. The assumption here is that it wouldn’t be wise to get back into the wheelchair after the apparent break to drive myself to the hospital, unless I am somehow in the chair right afterwards (e.g. the break happens on the way back down into the chair after a bone mineral density scan). That’s no big deal, been there done that with the ambulance ride. The rest of the countdown gets more precarious though. 2) Staying bedridden for a considerable amount of time in both the hospital and my bedroom. At least I’d assume that would be the case while the fracture heals over a number of weeks. In my life I can only be sitting in a wheelchair (the vast majority of the time) or lying in bed. When you can’t walk or stand there’s really no in between. So in terms of healing a fracture in my case, at least in the short term, on the flat of my back in the bed is probably going to be the place where it will occur.

3) If I’m bedridden for any significant amount of time then that opens the door to the very likely possibility of acquiring bed sores or having other related skin breakdown issues due to the constant contact with the bed surface. That can be combated by repositioning from one’s back to both of their sides continuously every few hours so no part of their body is in prolonged contact with the bed. As it is right now I keep about a maximum of a seven hour per body positioning rule while in bed (mostly on my back or sides). But if the four to six week bone healing period requires that my hips stay flat then I don’t know how I’d combat pressure sores on my bottom side. And again, it was an open pressure sore that got badly infected that ultimately lead to Christopher Reeve’s death. Heck, even if they don’t get infected it takes a very long time to heal any sores of that kind on quadriplegics because 1) you have to somehow minimize further pressure to the area (e.g. by reducing the periods of wheelchair sitting time) and 2) due to the lack of normal blood circulation the body gets from walking, etc. wounds in paralyzed lower limbs often times don’t heal along a normal arc. For example, I’ve had pimples from ingrown hairs on my calf take over a week to fully heal. And I’m just talking about a small pimple. Factor in the potentially difficult issues of bathing, toileting, eating, etc. all while in bed and like I said, the aftermath of a hip break for a quadriplegic could range anywhere from highly frustrating to dire consequences.

So with some of that stuff possibly hanging over my head down the road (*knocking on wood) this unexpectedly becomes quite the interesting chapter of my life I’ve had to turn the page on recently. Not to mention frustrating and even a bit scary. I mean take a look at this picture and try and tell me that knowing this has been happening to your hips doesn’t freak you out.

Luckily, hardly anything I do is risky behavior to hip trauma. I was assured that the morning range of motion leg stretch/exercises I do in bed before I get dressed will not put my hips in any further harm. Although just the other weekend a new PCA took my leg “scissor” range of motion maneuver a little bit too far wide and I felt and heard a small pop in my left hip. That made me snap out of my morning grogginess pretty quick. So I’ll have to keep that situation in check. Transferring in and out of the wheelchair should be just fine too. The only out of chair transfers I do involve getting in and out of bed, on and off my shower chair, and on and off my standing machine. Those are all pretty secure transfers. I’ve done the occasional transfer in and out of people’s cars in the past but that situation has rarely presented itself over the last seven years or so. Continuing to stand on my standing machine will be still be ok, if not helpful I’m told. So by continuing to lead a similar less physically risky lifestyle I should be in pretty good shape overall as far as staving off the risk of drops or other hip trauma that might lead to bone breaks.

But the harder hurdle to leap with this osteoporosis discovery has been the mental one so far. I’ve always been very conscientious about keeping my body in as healthy position as possible to be ready for the ever elusive cure for paralysis, and ergo a solid shot at returning all of my physical functionality and hopefully regaining the ability to walk along with it. But this situation has presented me with the first real proof that due to living all these years with my spinal cord injury my body is breaking down in certain areas. To that point, it’s quite daunting to now be at the mercy of two medications to restore the lost bone mineral density loss and stave off the now much higher likelihood of bone fractures in my hips, let alone the potential ability to walk again someday. It tends to make the latter notion much less likely at this point. (Although at this point simply regaining full hand and finger function would drastically improve the overall quality of my life.)

It reminds me of a meeting I had somewhere along the way about eight or nine years ago with a caseworker who was a quadriplegic similar in level of injury to mine. As always tends to be the case, we got to talking shop about how we came by our spinal cord injuries, what level of injury we were, sharing comparative old war stories on many aspects of the lifestyle, etc. At a certain point in the conversation he declared quite emphatically that even if a cure for paralysis was invented the next day he was never going to walk again. The proof to his argument was the fact that he had been in his wheelchair for a number of years and as a result his muscles had atrophied too much and his bone density had dropped off too far to withstand the rigors of carrying his body weight in an upright position. At the time I remember feeling like this guy had a defeatist attitude and that even though he made some pretty physiologically accurate points that he just had too negative of a life outlook. Flash forward to the thirteenth year of being in a wheelchair along with the discovery that I have severe osteoporosis in my hips and I feel like I can suddenly see the world from his view a lot more. So like I said, it’s a rough mental hurdle to leap.

Regardless, I’ll no doubt deal with this new life wrinkle the same way I’ve dealt with everything related to this SCI disability lifestyle, from my accident forward: with a mostly positive, forward thinking, ‘life is 10% what happens to you and 90% how you react to it’ theory on life. In other words, why sit around and dwell on what I can’t do and things outside my control? But damn if isn’t hard to stay perpetually sanguine when you get hit with physical and emotional setbacks like this: finding out that you might be living with a pretty serious bone disease for the rest of your life. Pretty big blow to the psyche. But I guess that’s just when you have to channel your inner Journey “Don’t Stop Believin” even more than before, which incidentally has been a much more frequent song list play on my iPod since that fateful rehab doc scan results appointment.

So for those keeping score at home, beware the rehab doc because: you might find out that you’re more disabled than you originally thought, you might need a bone mineral density scan, you might need to get belt/basket lifted up like a human jockstrap just to have said BMD scan taken, you might have to collect and tote about 2.5 gallons of your own urine to the hospital lab, you might need your blood drawn, and finally, when it’s all said and done you might find out that you have severe osteoporosis in both of your hips. But coping with it all with as good a sense of humor as possible? Priceless.

Now if you’ll excuse me, my eighty year old post-menopausal granny hips and I are fixing to score an ice-cold Ensure and go knit a bitchin’ throw rug.

Observations from Camp Randall: UW v. Michigan 11/14/09

Last Saturday's game against Michigan (a 45-24 throttling of the Wolverines) was the Badger's final home game of the season, and just like that another Fall of good times, not to mention interesting adventures going to and from my seats on game days, comes to a close. I will be taking a trip down to Madison to see the Hockey Classic at Camp Randall in February, but I won't be sitting in my stadium seats again until Fall 2010. The season always seems so long at the onset, but then when I leave the stadium for the very last time near Thanksgiving I always wonder how it seemed to pass by so quickly. Sigh. Onto the final 2009 installment of Observation from Camp Randall:

Observation #1: The tailgate is in full swing. I took my good buddy Ryan. My rehab nurse from 1996, who I've stayed in contact with over the years, was in town for the game and her and her husband had just stopped by. Another good buddy and fellow Badger superfan John, who I hadn't seen in over a year, had just stopped by. Cold beverages and friendly conversation was in high gear. Then out of the blue a gentleman in his mid-sixties butts in, explains that he and his sick wife, who he points out is sitting across the street on a bus stop bench taking a rest, are on the way into the game, and he was wondering if he couldn't score a few beers from us if we had any to spare. As he started to pull out his wallet to pay for them we all did a collective "Huh?" Ryan grabbed one, told him it would be no cost, and that since his wife was sick she probably didn't need one herself. He thanked us, muttered something about if we ever stopped by his station that we were good in his book, then disappeared. Only outside Camp Randall Stadium on a Badger football game day would something like that happen. And that in such an atmosphere your only true reaction is to just shrug and carry on with the tailgate action.

Observation #2: I took the picture below to further take people along my path into the stadium and up the elevator. In a previous post I took a picture of the line out the door and noted that the room with the elevator was up to the right. This is that room. The elevator is to the left below that TV. One person in a wheelchair was in front of me at this point.

Observation #3: The guy to the right in the picture below is the guy who manned the elevator all season long. I call him "The Captain" because he always wore that silly looking captain-esque hat. As I was snapping this pic an able-bodied couple behind me asked The Captain which elevator level they get off on to get to their seats. There's always a bit of confusion about that because nothing inside or outside the elevator clearly marks which seat sections coincide with what elevator level. Heck, it took me until this season to know with confidence that I was going to Section 5. Anyway, the following exchange occurred:

Able-bodied guy: What level do these seats go to?

The Captain: What section?

Able-bodied guy: WC.

The Captain: WC? Yeah, that's the wheelchair section, Level 5.

Able-bodied guy: Thanks.

Apparently, it was lost on everyone but me that the able-bodied couple who planned to sit in the wheelchair section but didn't use a wheelchair probably didn't need to ride on the elevator. That was pretty much a succinct anecdotal summation on the way the whole elevator thing went this year: seemingly everyone was allowed to use the elevator despite it technically being reserved for patrons with disabilities. That said, as far as I'm concerned The Captain needs to get himself a Tennille, a piano keyboard, and change professions because he was not very good at properly managing an elevator designed to give priority to people with disabilities. I still shake my head about when he told me there was no more room on the cart for a wheelchair earlier in the season. Hello?

Observation #4: This guy. That's all that needs to be said I think. He was wearing a head to toe plaid leisure suit and matching corduroy hat. To a Badger football game. Fantastic. He stood next to me for the better part of the third quarter and finally I just couldn't help but snap a pic because I was so blown away by his threads: easily the craziest looking outfit (student section aside) that I've ever seen anyone wear to a game in eleven years of having season tickets. And I live in a state where people wear blaze orange hunting garb to the stadium when it gets cold out.

Occasional access and frequent elevator woes aside, it was still another fine season of Wisconsin Badger football at Camp Randall Stadium this year. Lot's of awesome football was played, lot's of big team wins, and lot's of fun was had. I already can't wait until the first game next year!

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

A good friend of mine sent me the picture below. It's from a website that I was already familiar with called Fail Blog, which essentially posts interesting pictures and videos where people, products, etc. have "failed." From what I've seen on the site so far, I would say that "failing" to get a clue would probably describe things the most accurately. The picture below is a great representation of that notion. As you can see, it shows that the Wheelchair Foundation building is at the top of a set of stairs. Of course it's likely that there are ramps just outside the view of this picture, but if you take it for face value the prospect of stair only access to a building that presumably caters to people in wheelchairs is pretty intriguing. An "epic fail" according to the site's parlance.

Beware the Rehab Doc Part III.A. (The Surprising Results)

Ok so here we finally go with the two-part conclusion to what I’ve decided to start calling my Beware the Rehab Doc "Trilogy." (It took longer to put together than I planned.) And a bit of a surprising conclusion it is, I might add. To quickly summarize, a few months ago I originally sought a consultation with a rehab doctor who specializes in spinal cord injuries to, in part, get a medical OK to be able to add the use of an FES bike to my workout routine (see Part I). Getting that OK meant having to get a bone mineral density (BMD) scan of my hips and lower spine – an adventure (or misadventure rather) that I explored in great detail in Part II – to make sure that my hip joints still had enough bone strength to execute the repeated bicycle motions necessary to reap the FES bike’s benefits.

The morning of my follow up appointment I found myself a little nervous about the BMD scan results, but on the whole I was quietly confident that nothing major would be revealed. I say quiet confidence because after thirteen years of living with a spinal cord injury, with all the intertwined health issues that come into play, I have learned that there is really no such thing as being cocky about your body’s overall health. Unexpected things arise all the time.

Still, unlike plenty of people with spinal cord injuries who don’t live carefully (e.g. “I can’t feel my legs anyway so what do I care if I sit too close to the campfire?”), and ultimately even trash their bodies (almost irreparably) as a result, I have thus far avoided all the typical major pitfalls that can arise with this particular disability’s lifestyle. For example, I have never recklessly thrown my body around. I have never had any bed sores or skin breakdown issues. I have never had issues with urinary tract infections, which is a common problem with SCI folks when catheters, etc. are frequently involved for personal “plumbing.” In fact, it wasn’t too many years ago that I had an ultrasound technician tell me that my kidneys were so beautiful that they were worthy of being pictured in a medical textbook. You can no doubt thank all of the water that I’ve frequently consumed over the years for that. (Don’t mind me, I'm just trying to further justify dedicating a handful of detailed paragraphs to my urine output in the previous post). What else? No major blood clots or circulatory issues. No flu or pneumonia things that have affected my respiratory system. All things considered I’ve pretty much always been in tip top healthy condition overall.

But my quiet confidence fizzled down stomach punching reservation the second the doctor stepped into the exam room. I’ve always had a pretty good intuition about reading people’s body language and the way she politely squeezed through the door, gave me a limp handshake, and a quick sympathetic grin before she sat down shot a few red flags into the air. With little hesitation she said, “So I have your bone density scan here, do you want to hear the results?” Up until then I planned to be cute and say something like “Only if it’s good news.” But based on all that mentioned just above I just cut to the chase and said, “That’s what I'm here for.”

The highly unfortunate punch line is that the scan revealed that I have severe osteoporosis in both of my hips. The way that she broke it down for me is that on the BMD scale anything above 0 or 1 (I forget which) is considered normal bone mineral density. Anything from 1 or 0 down to minus 2.5 puts you in the osteopenia range, because your BMD is below peak BMD. Having osteopenia is not great but not necessarily overly bad either. Anything south of minus 2.5 puts you squarely in the osteoporosis camp. As of the day of my scan both of my hips were well below minus 4. Thus the “severe” in severe osteoporosis. What that means is that my body is at a high risk of hip fracture resulting from something jarring, like a drop.

So obviously my head was swimming with various thoughts when she read me my verdict. My first question was what did I do to bring this on? She said that simply sitting in a wheelchair for thirteen years did it. It’s a very common thing with people with spinal cord injuries. She explained that regularly putting and keeping weight on the hip joints through walking and standing keeps the hip bone material growing and built up. When that regular walking/standing slows significantly or stops then bone breakdown begins.

My next thought went to my EasyStand standing machine, which is a piece of rehab equipment that allows me to hydraulically pump myself up to a standing position. Specifically, how I didn’t use it as much as I wanted to, and how much I probably should have, over the twelve or so years that I’ve had it. After all, take special note of the Medical Benefits of Standing numbers 1, 2, 4, 10, and 12 in this link. I’ve used it about every other day for about an hour for the last five years at my apartment, but there was easily a six plus year stretch before I moved to Minneapolis for law school where I barely used it all. The primary problem was that it was hard to get into a regular pattern like I have now, doing it in the morning while I eat breakfast and watch SportsCenter. Had I used it much more often would my hips be as trashed? The quick answer was no, and that had I actually used it much more often than I did it would have only staved off the bone density loss to a small degree. The not walking and standing thing was the key factor with this particular ordeal.

The thing that really threw me for a loop, however, was when out of my own illustrative curiosity I asked her to ballpark how "old" my hips are as applied to a normal person’s life arc. She said it's hard to say for sure but if she had to throw a dart she would say that I have the hips of a post-menopausal woman in her 80's. That bears repeating: as of the day of that BMD scan I have the hips of an eighty year-old. Post-menopausal. Woman. But it’s like, seriously?! At a healthy thirty years-old?! Absolutely flabbergasting. And it snapped the whole scenario into perspective for me.

Now like I said, I didn’t go into this thing naively, because I’ve been battle tested regarding unexpected medical prognoses. First of all, common sense dictated that there would be some bone density loss after not being able to walk for a number of years. Second, in this regard I had a bit of an early warning sign, a shot across the bow if you will, when I broke both of my feet one month apart from each other in the fall of my third year of law school (more on that another day possibly). After analyzing my X-ray the doctor mailed me a note that said “Diffuse demineralization is present” and then a line was drawn to a handwritten side note that said “bone loss probably related to being nonweight bearing.” Although that was a little hard to read at the time it made sense to me.

So before going in for the BMD scan results I had accepted that there would some form of bone density loss. But even with that being said, to say that I was flat out shocked to find out that I had osteoporosis, let alone severe osteoporosis, would be a huge understatement. The thought never even came close to crossing my mind. Even if just that morning I was joking a little bit with my PCA that based on other strange health news I’ve gotten over the years on account of my SCI that “I wouldn’t be surprised” if I found out that my hips were trashed after all these years. But I didn’t truly believe that, not even for a second.

And have any scintilla of a concern that my lower body bones were weakening? Come on. I mean I’m from Wisconsin, the Dairy State, and I worship at the altar of Kemp’s milk at least three times a day. Moreover, one of my theories as to why my diet hasn’t worked as well as I had hoped over the last year is because I just can’t seem to refrain from putting cheese on most things I eat: pizza, burgers, sandwiches, baked potatoes, salads, pasta, cheese and crackers at football tailgates, with vegetables to make them more bearable, etc. That said, with all things spinal cord injury disability related under consideration, the last thing I figured I ever had to worry about was the weakening of my bones or that I needed to take calcium supplements. But I guess milk doesn’t do a body good in all instances.

The bittersweet thing is that I'm still young enough that with the two medications the doctor prescribed (osteoporosis pills, mineral/vitamin/calcium combo supplement) she said that we can not only stop the deterioration of bone density but even start building it back up. At least that’s the goal. She said she's seen "80 year-old hips" in eighteen year-olds who had spinal cord injuries early in their youth and they were able to battle back and regain a lot of that bone density. Of course the only way to truly gauge the progress that my body is making in that regard is by doing BMD scans every six months for an indefinite period of time, possibly for the rest of my life. Judging from my frustratingly detailed account in Part II of this trilogy of everything involved with that exam you can imagine how happy I am about that. Especially now knowing that from this point forward any equipment failure that drops me would likely result in a hip fracture. Good times.

I’ll pick it up next time with my follow up thoughts and concluding remarks, before this post gets way too long.

But as long as I’m being quite candid already, I’d be remised at this point if I didn’t highly emphasize to any people with spinal cord injuries who might be reading this that you should get one of these bone mineral density scans done. Even if there are no signs that currently point towards you having lower spine or hip bone weakening issues, or no doctor has ever suggested it to you, I think it’s well worth inquiring about nonetheless. If you have paralysis that affects your lower limbs and you have mostly been sitting in a wheelchair for a number of years than it’s more likely than not that your hip bones have slowly been weakening in a similar fashion to mine. As I mentioned, with SCI it’s just the nature of the beast in a lot of cases, and I’m writing about in such detail to be overly poignant about that. You’re much better off getting ahead of osteoporosis issues and/or battling back before it’s too late or it could potentially have dire physical consequences down the road, which I’ll get into from my perspective next time.

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

I took the picture below at a Byerly's, which is the grocery store that I shop at in Minneapolis the most often. With the mostly meager bottom line that I’ve carried through my four years of law school, plus the handful of years since, I probably shouldn’t have continued to shop there with such regularity because it’s a grocery chain that caters to a wealthier clientele on the whole, and has higher prices on average as a result. But I’ve continued to do so nonetheless for three main reasons: 1) I workout in the neighborhood every Friday afternoon so it’s convenient, 2) they bag my groceries for me, and 3) I can either drive up to retrieve them or they carry them out to my van for me if I can't handle them myself. It's a huge selling point for me.

What’s the big deal with the latter two points some may now be asking themselves. Well you don’t live in the greater Minneapolis area, where for some reason hardly any prominent grocery store chains bag shopper’s groceries for them. In fact, it’s one of three cultural observations that immediately struck me upon moving to the cities: 1) the vast majority of common grocery stores don’t bag groceries, 2) no grocery stores have liquor stores attached to them, and 3) liquor stores aren’t even open on Sundays. I grew up my whole life in Wisconsin with grocery stores having hired baggers on hand for every checkout aisle, so I found the fact that they don’t do the same thing in Minneapolis very out of place, not to mention unfortunate for me personally since it can be quite difficult for me to bag all my goods by myself. And not being able to buy a case of full strength beer on football Sundays over here is just plain mind-blowingly asinine to me; I mean the state of Wisconsin would shut down if that was the case over there. That’s not even a theory, that’s a true fact. Wisconsinites come strong in that department.

Anyway, two things immediately stick out to me when I witness a parking scenario like this. First, this person is parked crooked across the yellow access stripes. As I’ve mentioned before, those striped zones are vital for someone like me who needs extra parking room for my ramp and wheelchair. I have what I think is a pretty strong theory that drivers who don’t have true, permanent physical disabilities are the primary culprits for parking crooked like that. Those of us that do live with more significant disabilities always park straight, even if we're in a rush, because we respect the fact that other people might need to use those striped zones for their own access.

Second, the car is a Lexus. I’ll admit right off the bat that people with all kinds of disabilities drive all styles of vehicles. But that notwithstanding, whenever I see a luxury vehicle parked in a handicapped parking space, let alone when it’s both a luxury car and parked crooked, it always raises an eyebrow. Moreover, in all of my vast accessible parking experiences spanning thirteen years I have yet to see a person getting in or out of their luxury vehicle who looked like they needed to park in an accessible space. When I see that I always picture a doctor doing a favor for a golf country club buddy so they can park close everywhere and not get their nice car scratched.

A quick relatable anecdote: About six months after my accident my parents were invited to attend the Governor’s Christmas party down in Madison, WI. At that dinner my parents were seated next to some wealthy desperate housewife who was talking openly about how she had her doctor friend write her a script for a handicapped parking hangtag, and how great it was to be able to always have an open parking spot when she went shopping. My parents didn’t say anything at the time so as not to potentially make a scene with so many of my dad’s Secretary Cabinet colleagues around, but my dad said that my mom was pretty upset by it on the drive home. Granted, it was still a highly emotional transitional time for my family, but on the whole that was a pretty classless move by that lady to be so ignorantly boastful, even if she couldn't have reasonable predicted that someone within earshot had a disability connection. And unfortunately that's not an isolated incident in that regard.

I had a similar experience my last semester of college when I was doing an internship at a law firm. At the spring firm picnic I started to overhear a handful of guys, including one of the senior most partners, standing about eight feet away from me talking up the great advantages of getting to use handicapped parking whenever they got the chance (i.e. through friends, wives, relatives, etc.). I didn’t say anything at the time because I was the low man on the totem pole and had it in the back of my mind somewhere that if I got after them and caused any embarrassment (even if it was due) that I would blow my chances of working there someday, if I ever applied for an attorney position after law school. But I always regretted it, even if one of the lawyer’s names was placed most prominently on the firm’s letterhead. If I could do it over again I probably would have said, “Do you guys mind not talking so loud about how great handicapped parking is in front of the guy in the wheelchair?"

But all in all the point of this picture in particular is that in my world a person parking crooked in a handicapped spot + driving a luxury vehicle usually equals a shady disability situation + I have to park somewhere else.

Tinkering

I'm not sure how closely that people are following this thing, but regardless I wanted to make brief mention of a few changes I just made. First, I added a picture to my most recent Observations from Camp Randall post. When I went to the Iowa game last weekend (BTW damn I hate losing to Iowa...) I nabbed a shot of that sign by the elevator that in part says 'reserved for patrons with disabilities' that I previously referenced.

Second, I made some changes to my most recent post about my mom putting her plants in my ramp hallway at my parent's house because I decided that it did not turn out the way that I wanted it to originally. Incidentally, this is why my autobiography might never see the light of day because I keep going over stuff I've already written and making sizeable changes. Especially the stuff I wrote pre-law school when my writing was a little bit less sophisticated. Yikes...

Anyway, the whole point of that post was to be a playful departure from the other crappy lack of access issues I've already posted about, as well as those to come, by bringing to light a funny "access" issue at home. My mom's a super special sweet lady and the greatest mom a guy could ever have, she thinks of me and my sister first for everything, especially when it comes to me and issues of my accommodation. Truth be told, the whole annual putting the plants in my ramp hallway thing has become a running joke between me and my parents, so I just wanted to make that crystal clear in case people took my post about her plants and my ramp for anything else. They may be a little poofier and harder to roll around than in the past, but it's no big deal overall. In fact, I am looking forward to seeing if my niece and nephew have their own mini 'Where the Wild Things Are' moments throughout the winter. I can picture the "No buddy, the plants don't need to be watered again" or "No no guys, it's too cold to play in the tunnel" back and forth unfolding already.

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

Oddly enough, this week’s pictures come from none other than my own parent’s home in Eau Claire. What you’re looking at specifically (further below) is the ramp hallway that goes from my room to the garage, at some point dubbed “the tunnel.” After my diving accident my parents added on a wing to our house that became my new, fully accessible bedroom, which included a private bathroom, a small office area, my own accessible doorway to our back deck, and that ramp.

Since at the time of my accident my room was in the basement, gaining near full accessibility downstairs would have meant cutting some nasty hole into the upper level floor somewhere to install an elevator, putting in much less aesthetically pleasing, dense industrial carpet that’s easy to roll over, and completely gutting parts of my room, our storeroom, and the bathroom to make it all work. In retrospect we clearly made the right decision.

The ramp itself runs the length of the backside of our garage and comes out into a separate garage that was also added on for my near-exclusive use. Clearly, it all made my ability to come and go pretty seamless. Not to mention private and quiet from my parent’s ears on nights that I came home late.

Between 2003, when I moved out of the house to start law school, and now the ramp has taken on bit of a new life of its own in three respects. First, in December of 2003 my parents got two cats and they love spending time out there. It gives them about a half dozen windows at their height to look out into the side yard and a warm sunny place to nap. It’s not an uncommon sight to see them clawing at the door to be let out there.

Second, it’s becoming an intriguing playroom for my niece and nephew, 2.5 and 1.5 years old, respectively. They just love simply running up and down the ramp for two reasons that I can figure: 1) little kids just love ramps for some reason, they go nuts for my van ramp too, and 2) the ramp was built on a triangular box and the floor is hollow under the plywood, so every step they take sort of makes a hollow thud noise they love hearing. And starting this past winter my nephew goes nuts for watering the plants out there. I assume that my niece will see that and want to join in soon as well. Which leads me to...

Third, and coming back around to the point, over the last three winters my mom has stashed a lot of her outside potted plants in there. My room and ramp are heated with thermal heating via hot water coils in the floor and the ramp itself is kept at 45 degrees throughout the winter, so between the in-floor heat and outside light that beams through the windows my mom treats it as her de facto winter greenhouse for about four months.

Once she puts her plants in there it cuts the open ramp space down by about third. Technically I think I only need about half the ramp space so that's fine, but it plays tricks with my mind because I don't want to damage the plants. That said, I make my ingress and egress a little bit slower because I want to be extra conscious of not driving over leaves and vines while also not over compensating by running into the wall. I usually rake the back of one of my hands or stick out my elbows like a rudder to run along the wall as I go so I know not to move over any farther than is necessary.

But this year my mom must have been hitting the Miracle Gro extra hard because all the plants are especially extra poofy. I still have enough room on the whole but I’m afraid that I might do some pretty decent damage to her precious plants by the time the ground freeze period is over next April, which would make me feel bad. “Just smash them down, who cares?” she told me Friday night when I paused after I turned the corner and saw that I was dealing with a much wilder kingdom than I had in the past. Easier said than done. I tried that same thing last year and my front wheels flipped over a plant pot in front of me and I got stuck for about ten minutes. I couldn’t back up because one of our cats wouldn’t move and I had a basket on my lap so I couldn’t bend down and smack the plant aside. I could have just driven over it I suppose but I try to defer to them as much as I can since I think some of those things predate me.

Did I mention that the tunnel is so well insulated because of residential disability fireproofing laws that it’s virtually soundproof? It’s a good thing when I’ve come home from the bars, etc. with some rowdy friends, not so much when you’re trying to yell for help. After wondering where I went my mom finally emerged and said, “What are you doing?” I said, “I tipped over one of the plants and it blocked my path.”

I love my mom with all my heart and it's only in good clean fun that I call her out on my blog a little. Truth is that it's only a little annoying, and even mostly creatively cute that she uses that space for the plants. After all, I'm not there too much in the winter anyway. And she always goes out of her way to move plants around so that I can get in and out as easily as possible. My personal accessibility has always been at the forefront of my parent's thinking. I just thought this would be a fun departure from my other documented access issues.

For the record, she wanted me to very clearly point out that she’s a plant lover and doesn’t want plants she’s had for years to die in the cold, and also that she deserves a pass because she’s doing her small part to oxygenate the planet. So because it is my mom let's just file this post much more under interesting, and maybe a little bit annoying, but definitely not aggravating by any means whatsoever.

So here’s to another winter of somewhat begrudgingly sharing my tunnel ramp with a crap load of plants, extra hallway oxygenation, and that robust, closed space, clingy earthy stink that almost makes you want to wash your hands and face by the time you’ve run the plant gauntlet.

RIP Christopher Reeve: My Personal Encounter with the Man Himself

Today marks the five year anniversary of Christopher Reeve's passing, and I couldn’t let it pass by me without sharing a few words about that. In short, his death was a highly unfortunate event at the time, and its saddening impact remains so to this day. I still remember that day quite vividly in fact. When I first caught word that he had died everything in my life stopped briefly. I was a month and a half into my second year of law school, and needless to say my studies took a dive for the rest of the day. In its stead I hit the web and read everything about his passing that I could. That followed with a period of extended quiet reflection. I found the way he died (suffering a cardiac arrest that was preceded by a skin pressure wound that caused a systemic infection) very sobering because it’s something that’s an issue for all people with SCI. Thankfully pressure sores and skin breakdowns have never been a problem with me – presumably a result of my being careful with all the body parts I can’t feel and my surprisingly tough skin – but what put things into perspective was the realization about how things could go south pretty drastically if it were to ever occur.

Once the initial shock wore off my thoughts on the matter went into two different directions. First, and I briefly echoed this in my Derrick Thomas post, I was deeply saddened to lose an “SCI brother.” Living with paralysis stemming from a spinal cord injury has become a pretty common disability type these days but that group as a whole is still quite a minority as compared to everyday, able-bodied society as a whole. So to that regard I’ve always felt like I’ve shared membership in a club of sorts to others who live with SCI. Thus I always felt a fairly strong connection to Christopher Reeve. And not just that, but he was the president and CEO of our unique club.

That said, secondly, and maybe selfishly, my thoughts then immediately went to fear for the future of SCI research and fundraising. People in my position, who have lived this lifestyle for years and years, are not just going to wake up on some given morning to discover that all of our physical faculties have returned on their own. We rely quite exclusively on the discovery of the elusive cure for paralysis to get most, and possibly all of it back. With Reeve’s passing, the discovery of said cure and other related things that improve the lives of people living with SCI suddenly felt iffy because our greatest champion for the cause had fallen. Reeve was almost hands down the face of our disability, thanks in large part to his popular global icon status as SUPERMAN. Without his unfortunate accident, and the publicity that ensued, SCI issues would not have been thrust into the public sphere to the immediate and vast nature that they did. Moreover, his journey in the aftermath, his positive attitude, and his decree that it was not a matter of if, but when he realized his dream of walking again brought a ton of awareness and activism about SCI in a short period of time that I’m guessing would not equal where we would be fourteen years later today without him.

Thus right away I was highly concerned that all of the great progress that was being made in that area while he was still alive would slow down significantly after his death, or worse: stall out completely. But the Christopher & Dana Reeve Foundation has continued to do great things in his wake, and with Marc Buoniconti being on the cover of Sports Illustrated a few months ago representing The Miami Project to Cure Paralysis and all of their great work, I think that the fight for a cure for paralysis has been able to maintain itself as an important public issue that requires much more progress to fulfill its ultimate goal.

My own personal account of Christopher Reeve dates back to the fall of 1996 when I met him briefly in Denver, CO. Somewhere around early November Reeve was in Denver for a major public speaking engagement at the downtown convention center. At the time I was still out in Denver for an eight week extensive inpatient spinal cord injury rehab stint at Craig Hospital, arguably the finest facility in the country (if not the world) for such a thing. While he was in town he stayed in a room about six doors down from mine in the East Building at Craig, which is essentially the residence wing. All the rooms in that part of the facility were set up like single living accessible apartments with a private bathroom, a mini fridge, an office-type area, and a living room area with a pullout couch bed for family members to sleep on. Most of the Craig patients that roomed in the residence side of the facility were in their final transition period before getting discharged from rehab, which for me meant that at the time I was in my last two to three weeks before going back home.

It was no surprise that Reeve stayed at Craig while he was in town. First of all, the room where he stayed was easily the most accessible lodging in the city, not to mention completely private from the public. Second, the word on the street leading up to his visit was that immediately after his injury Reeve wanted to come out to Denver to do his SCI rehab at Craig, because of the great national reputation it has, but they didn’t have any patient openings to accommodate him at the time. I’m not sure if that’s actually true but if it is then in a roundabout way he finally got his chance to stay there and see the facility first-hand.

The morning after he arrived he held a city-wide press conference in the media room at Craig (fun fact: I used to watch my Packer games on their 72 inch big screen TV). I don’t remember if I missed the presser because I wasn’t up yet or because I was in the middle of my morning therapy sessions, but my dad went down and took some pictures (I’ll have to scan and post later). Sometime afterwards my dad came back to my room and mentioned that a bunch of other patients had congregated a few doors down from Reeve’s if I wanted to go try and meet the man himself. I’ve never been one to resort to rubbernecking but considering I would probably never have such an opportunity ever again I ventured down the hall to join the other half dozen or so nonetheless.

After a brief moment Reeve appeared from his room and came down to us. He used a sip and puff mechanism to drive his wheelchair and as soon as he stopped and moved his mouth away from the sip/puff thing he said “Hey, everybody” in a quiet, friendly voice. The group responded with a collective ‘hey’ back. Then he asked what we were doing there at Craig, kind of focusing his attention on one lady in particular to start things off. She was a paraplegic who was discharged less than two weeks after I arrived at Craig. If my memory serves it was her second time at Craig due to a re-injury. I remember also that she was very loud, brash, and kind of speedy aggressive with her wheelchair, but not necessarily in a negative way. She belonged to a click of sorts with a handful of other patients who had been in rehab together for quite the same amount of time. Whenever I saw them hanging out in the halls I felt like a high school freshman steering clear of the cool upper classmen group all over again. It should be noted that in true circle of life fashion (my nephew’s really been into the LION KING lately so I had to throw in that reference) about four weeks after she was gone I found myself involved with a similar click of my own. And in my rehab discharge roundtable with my parents and rehab team my physical therapist (an ex-Navy SEAL of 26 years) mentioned that a handful of his other rehab patients had started requesting a fast manual wheelchair like mine, assuming that the chair was the reason for the speed I was exhibiting, not me making it go fast.

Anyway, when he essentially asked her what she was there for she very quickly replied, “To see you.” Then he said, “Well are you here for therapy as well?” And then she said back, “Nope, I just came to see you.” I don’t recall the details of any other specific conversation exchanges he had with the group but I do remember that he didn’t stay and chat with us for long. I remember thinking at the time, and still feel the same to this day, that it was unfortunate that of any person in the group that he opened up his brief friendly dialogue with it was with the one person who was no longer affiliated with the facility and had only visited that day just to get a close up look at him.

My immediate impression of the whole exchange at the time, and an opinion I still strongly share to this day, is that I think he just wanted to shoot the breeze with us about our therapies and our thoughts on getting a chance to do rehab at such a fine facility. Kind of a “we’ve all gone through this” note comparison session. That theory carries extra weight if it’s in fact true that his admission request was turned away. So as far as that goes, I always felt like he just wanted to pick our brains about getting to do something that he never got the chance to do. That’s why I think it’s too bad that most of his native chit chat time was taken up with someone who couldn’t read between the lines. I feel like at least she could have told him that she was a former patient and not just a crazy fan. Had he engaged me instead I would have said that I was a c-7 quad, had a diving accident, was from Wisconsin, came there for more aggressive therapy, it was hard as hell to be away from my family and friends but it was a necessary move that I didn’t regret, talked up the quality of the joint, and asked where he rehabbed and what his thoughts were about it. I guess I should have raised my hand or something.

That afternoon I got the chance to go to the convention center and see him speak. In fact, most of the hospital staff and patients got the afternoon off from therapy to do so as well. For me it was a very liberating roundtrip because unlike most everyone else who got bused downtown, I got a separate day pass to go by myself with my parents. One of the smart things my parents did was have our Chevy Blazer driven out to Denver so they had a vehicle to get around. It was only a small handful of times that I got to leave completely untethered from the facility. So it was kind of a big deal at the time to be able to drive down there by ourselves.

Because we were on our own schedule, we got to head downtown after most everyone else had already left. As fate had it, on our way to the elevator we crossed paths with Reeve and his crew of people, who were also getting ready to load up on the elevator. They were right by the elevator doors so we waited politely behind this decorative wall divider thing so that they could get on the elevator first. But someone in his entourage saw us and and waived us past because they weren’t quite ready. As I was just about to break into view of him I heard him say “A little more to the right” which based on my own experience I assumed meant that their holdup was because he needed a body adjustment in his chair. Thus even though I passed by him within less than six feet between us I didn’t look over in his direction to respect his privacy. In retrospect I probably should have glanced over and given him a quick hello or a friendly nod, but at the time I felt pretty strongly about keeping the blinders on because I knew how frustrating it was to have people stare at you while you were getting some private adjustment.

So my one close encounter with Christopher Reeve didn’t quite have the bang for the buck, and was more like a fly by, but at the time it was a really great moment for me and my parents. And I always like getting the chance to share the story. But overall, the thing that I will always take away from that day and that chance meeting is that when you strip it all away – the Superman thing, the social popularity, the global icon status, the face of our disability – he was just one of us: a guy who sustained an unfortunate, life altering spinal cord injury, became a quadriplegic, and was just trying to continue on with his life as best as he could. And yes maybe that included waiving a few people onto the elevator ahead of him because he needed help getting a few small adjustments to make him feel more comfortable and presentable.

Keeping with the spirit of this anniversary, here’s a couple of related links I wanted to share. The first is an article written by the CEO of the Christopher & Dane Reeve Foundation about how the best way to honor his legacy is to find a cure for paralysis. Clearly, I concur with that notion. The second is the Reeve Foundation forum page where people have been posting their thoughts about the five year anniversary of Reeve’s passing and sharing stories about how he touched their lives.

So in closing I say rest in peace, good sir. It was great getting the brief chance to meet you once upon a time in Denver.

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

I'm starting a new blog segment so titled above. Being a wheelchair user I encounter plenty of annoying, aggravating, and interesting access issues as I venture out in public. So I thought that I would start being more cognizant about recording them with my phone camera, etc. so that I can share them here. In doing so I thought it might enlighten people about these sometimes hidden, yet often significant obstacles, and hopefully people reading this might even start making some changes accordingly.

What I will no doubt post about the most are my frequent, frustrating encounters with handicapped/accessible parking issues. (I'll use those terms interchangeably because handicapped parking is the most commonly referred to terminology but accessible parking is becoming much more pc). To give people the quick skinny, I drive from my wheelchair in a minivan equipped with a fold out ramp. To get in and out comfortably I need about eight total feet of free space on my passenger side to have enough room for both my chair and my extended ramp. Therefore, using accessible parking spaces with a fairly large striped striped area adjacent to them is an absolute must for me to freely go out and about.

To kick things off I thought that I would post a few pictures I took during a recent trip to a mall to get a haircut. As you can see just below, the large SUV across the aisle from my van is parked crooked. Specifically, it is parked crooked across the yellow striped zone next to it. Now look at my van with my ramp fully extended onto the striped zone and then look back at how the SUV is parked. From my perspective this presents two significant access issues: 1) I couldn't park in the spot on the SUV's driver's side because I wouldn't have enough room to get out with my ramp, and 2) if that person parked crooked in that spot after I was already parked I would not be able to get back into my van for the same reason. Because getting someone ticketed and towed is far from expedient, in the vast majority of cases that I have had the latter occur I have typically had no choice but to sit and wait for the other driver to leave. That is also the primary reason why I don't venture out to busy parking lots in the cold weather months. This is a great first picture to demonstrate the aggravating parking issue that I encounter the most frequently. This theme will be revisited again later on.

Handicapped parking abuse is such a heated passion area of mine that when I was in law school I wrote a 55 page research paper on handicapped parking laws for my independent research class. The course requirement was 25 pages but I got caught up in doing it the way I wanted and making it the most complete project that I could. One of my long term goals in life is to somehow get the whole handicapped parking system much more under control and curb the rampant abuse. At some point I will post my own personal "Handicapped Parking Manifesto" that I've been kicking around in my head for a number of years.

But what should be gleaned from pictures like these is that when people don't park within the lines and/or park crooked onto the striped zones next to accessible parking spaces it can make them very difficult to use at the least, highly inaccessible and unusable at most. Not to mention a total day ruiner. Those striped zones are absolutely necessary for proper access for people like me who use wheelchairs and they should be left clear of all barriers all the time, even if we're not always seen using them.

Observations from Camp Randall: UW v. Michigan State 9/26/09

All in all a pretty stellar Badger game day on Saturday. It started with me getting the chance to take my brother-in-law Ryan to his first ever Badger game at Camp Randall Stadium. I always love seeing how in awe first timers are of the whole home Badger game day experience. Then it ultimately ended with a real solid win against Michigan State, 38-30 (what the final score doesn't reveal is that it was practically a blow out). Here are my observations in between:

Observation #1: The line for the elevator was fairly long once again. See the picture just below for my view from the back of the line. The main room for the elevator is up and around the corner to the right, just in front of the person wearing the red jacket.

As I was taking this picture on my phone I overheard this gentleman behind me say: “Jeez, is the line for the elevator always this long?” I muttered to my brother-in-law, “Yeah because too many people like you try and use it instead of taking the ramps or stairs like you should.”

Observation #2: The elevator itself is pretty spacious so by the time the it got back down to the bottom level everybody in front of me was able to pile in. But it was full by the time it was my turn to get on so I was the cutoff, which lead to this interesting exchange with the elevator attendant:

Him: “Sorry, no more room for wheelchairs on this trip.”
Me, looking in to see not one person in a wheelchair or with a notable disability: “Yeah, I see that.”

Everything that was wrong with his statement was completely lost on him and everyone else already on the elevator. Again, it’s become an ‘every man for himself’ mentality with that elevator so of course no one bothered to offer to give up their spot for me and wait for the next trip. I couldn’t get my phone up quickly enough to snap a pic of the full able-bodied cart before the door closed, but while I was thinking about that missed opportunity my brolaw sent me this text: “Wasted elevator trip not one person who actually need the elevator.” Indeed.

Observation #3: When the elevator came back down I was the first one to get on. So I went to the back and spun around quickly so that I didn’t have to face the back wall the whole ride up. Then another guy in a chair came on and followed suit right in front of me. But when he backed up he came back so far that he started to smash my foot. Since I couldn’t back up any more I gave my knee a quick slap from the outside to move my foot over a bit to unjam my toes without making a scene. I only point this out because I always have much more awareness about how close me and my chair are to others. I'm over-sensitive to it in fact. So that was intriguing.

Then as the elevator door was closing there was a call from the first floor attendant: “Hold the door, we have a few more walking people that can fit.” Again, a statement lost on just about everyone else involved. And on to the elevator came a couple and their 18 month old child.

Observation #4: Somewhere in the second or third quarter of the game I overheard the following exchange between two stadium concession guys. They were leaning on the pillar in the picture below, which is directly to my left about three feet (people lean there to watch the game all the time and the security guy assigned to our section is usually much more focused on chit chatting with passersby than telling the lingerers to find their seats):

Guy 1: “So we’ve got 72 buns but only 15 more hotdogs left. So my question to you is this: can we get some more meat?”
Guy 2: “Absolutely, absolutely.”
Then they walked away, easily making for the most obscure conversation I’ve ever paid witness to at the stadium.

Observation #5: My brolaw and I stuck around for most of the Fifth Quarter since it was his first time seeing such a thing. So when we got to the elevator we had it all to ourselves at first because there was no one else waiting, which has become a rare occurence. After I pushed the button I looked up and noticed, possibly for the first time, a sign on the wall just above it that read: 'Please reserve the use of this elevator for our patrons with disabilities.' As Ryan and I both commented on the sign that same couple with their young child got in line for the ride down again. So much for reserving for people with disabilities.

I rode down at the back of the elevator cart next to a young couple. Behind me there was a combination of a slow door close and more people trying to pile on. Presumably annoyed by the waiting period the girl said to her boyfriend, “Maybe we should have just taken the stairs.” He said, “Yeah.” Yeah, indeed. Then he said, “But the stairs smell like garbage.” Hmm, so is that that why nobody seems to take the stairs around here?

Regardless, as we were leaving the stadium I decided that I needed to figure out what University of Wisconsin official I could get in contact with to get this whole situation fixed before I go to the next game. Through its clearly posted signage the stadium itself has put people on notice that the elevator should be used primarily for people with disabilities. Yet over the last two seasons it’s become obvious both that too many fans without disabilities are frequently using the elevator and also that elevator staff members are doing a very poor job making sure that people with disabilities should always get near exclusive priority use. The fact that a wheelchair user like myself routinely gets bumped for a cart full of able-bodied folks, and that I often risk missing the start of the game because of it, has become a total farce. Enough is enough.

Happy Birthday, Christopher Reeve

Today Christopher Reeve would have turned 57 years old, so I thought it was at least worth a quick honorable mention here. He was a great man and a hell of an advocate for people with disabilities. When it came to spinal cord injuries specifically he was our torchbearer to raise SCI awareness and much needed medical research funding. His dream, like many of ours who live with SCI, was to one day walk again. So to that regard it is highly unfortunate that he did not live long enough to see that dream fully realized. But I think that he would very proud of the great work that his family and the people at his ReeveFoundation are doing in his stead. Read here about what the Reeve Foundation is doing to commemorate Reeve's legacy on his birthday.

To do my small part as a birthday gift in honor of Christopher I wanted to mention this cool thing I discovered through the Reeve Foundation Twitter page: a free Reeve Foundation search toolbar. Apparently, every time you search with this toolbar the Reeve Foundation makes a few cents that goes towards their work "curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy." So if you don't already have a search toolbar (e.g. Google) and feel philanthropic, this is an easy way to donate. You can get it here.

All that being said, happy would-be 57th birthday Christopher, you are missed.

Store workers build wheelchair ramp when customer's chair lift stolen

I just came across this story via one of my Twitter feeds and I had to share it here real quick. In short, it's about a lady who planned to move her brother, who suffered a stroke and had to use a wheelchair, into her home while he recovered. But shortly before he was discharged from the hospital their moveable wheelchair lift was stolen. (Who does that, seriously?) So she went to Home Depot to try and buy materials for a temporary ramp. After mentioning her issues to a few Home Depot workers, they offered to come over to take a few measurements in case they could help throw something makeshift together. Instead, and unbeknownst to her, they built her a full new ramp. A stunningly cool ramp, I might add, considering the impromptu planning involved. Just an incredible story and a great example of selfless generosity.

I myself have have had a few experiences with similar ramp building kindness. Of course, my parents built permanent access ramps for both their house and our lake cottage, but that was to be expected. But more specifically, one of my best friends built a pretty awesome, full length removeable ramp so that I can get in and out of his house pretty seamlessly. We still use it all the time, and in a lot of past instances he just left it down even during long periods of time when I was not scheduled to visit. And just a few summers ago, before my parents modified our cottage, our lake neighbor and family friend unexpectedly threw together a quick, temporay ramp in his workshop. It was very cool of him, and I used it that very day too because of an incoming rainstorm. In the past, by the time we got our other temporay ramps in place we were stuck in the rain a little bit. Thus, there were plenty of other times pre-permanent cottage ramps when the rain came in so fast and heavy that I just got in my van and waited the storm out there because it was the quicker and dryer option given the circumstances.

So I have a great deal of respect and appreciation for what those workers did for that lady and her brother. It was a very, very cool thing. Check it out, and enjoy!

Observations from Camp Randall: UW v. Fresno State 9/12/09

Other than the usual BS I encounter battling the masses of 80,000+ to and from the stadium I don’t have any Camp Randall observations to report this week that have to do with instances of accessible and disability dichotomies. I think that last week was unusual, even based on previous years of experiences, because I encountered so many in the same day. But going into a slightly different direction I am happy to share what was arguably the strangest encounter I’ve ever had leaving the stadium in eleven years of having season tickets.

To quickly set the stage, by the time the game hit the middle of the 4th quarter I started to get pretty hot, which meant that a cold drink was the best quick fix. But with only five minutes or so left in the game the kids that sell drinks had quit running around, and it’s not worth paying the $4 for a Coke at that point anyway. Ditto for the $4 water bottles of water they sell (ridiculous, don’t even get me started). Additionally, there are no water bubblers on my seat level and I sure as hell wasn’t about to go stick my mouth under a bathroom faucet that 1000’s of other fans had used all day. So I decided to just wait it out until we got back to my van. At that time it looked like we would be pulling out a tightly fought victory in mere minutes.

Well that had to be the day that we couldn’t close it out, Fresno state tied the game late, and on to overtime we went. By the time the team won in thrilling fashion after two full overtime periods about a half hour later I was in desperate need of a cool breeze and a chilled beverage. Because there was another big line for the elevator we just decided to take the ramps down instead. As I mentioned previously, I'm at a stage in my life where it’s worth waiting in line for the elevator to reduce wear and tear on my wheelchair. But on hot days like Saturday even waiting in line for more than a couple minutes gets me agitated because of the extra body heat floating around a closed area. Kind of makes my heat issues worse. At least when you take the ramps you often get a strong cross breeze, which was a welcome thing at that moment.

Of course that decision was proven to be a loser when we got caught in the crowd one ramp level down. The breeze was still welcome but the foot by foot slow trotting got frustrating because it gets hard on my chair – it’s either a lot of clicking in and out of gear or barely rolling which I assume gets hard on the drivetrain.

One ramp turn downward and I noticed another gentleman in a wheelchair coming down behind me on the ramp level just above. We exchanged a polite head nod, not unlike how my dad salutes fellow Harley dudes when he’s on his motorcycle. Behind him I noticed a woman in her mid 30’s on a blue scooter and thought nothing else of it. But with each ramp level we went down I noticed that she kept getting closer and closer. About halfway down she was a dozen and a half feet behind me on the same level, aggressively weaving her way through the throngs of people. Now I was trying to execute the same strategy, albeit much more politely, except I was stuck behind a group of senior citizens and was much more focused on not getting hit by the seat cushions they were swinging with each step.

The next thing I knew she was pretty close behind me. Another turn to the next ramp down and she was right on my hip. Barely worth giving a second thought to at first. Then it got weird. At the time I was towards the middle of the aisle but she started forcing me to the inside toward the wall so she had enough room to pass me on the outside. I tried to stay true to my current line but we almost banged wheels so I had to turn it in slightly to avoid collision. And so this went for a little while. Ridiculous. Not sure why passing me was so imperative. Proper etiquette in that situation typically dictates that you wait your turn. Instead she turned it into some wheelchair/scooter version of NASCAR. Which incidentally I can’t decide if it would be the kind of über lame sport you’d only see at 3am on ESPN2 after World’s Strongest Man or a YouTube nation ratings blitzkrieg. I'm inclined to lean toward the latter.

Anyway, we damn near trade paint for about a hundred more feet until she makes another series of aggressive moves and shoots her way past me and through the crowd in front of us. By the time I popped out at the bottom of the ramps I saw her across the way rolling full tilt, weaving through traffic, and cutting people off.

Bigger picture what this whole scenario did was further exacerbate this unspoken rivalry I feel like I’ve always had with scooter people. And my main premise for that rivalry can best be illustrated with a question/answer that I might have seen on my high school ACT exam: wheelchair is to permanent mode of disability mobility, as scooter is to mostly temporary mode of disability mobility.

Now that is not to insinuate that all scooter users have temporary disabilities because many folks do rely on scooters for their primary mobility purposes. But what I am saying is that in the vast, vast majority of instances where I have seen people in scooters they have pretty substantial use of their legs and can even walk certain distances without their scooter (e.g. a lady in my building used her scooter and mostly effortless walking ability interchangeably). People that have significant, permanent, physical disabilities that effect their every day all day ability to walk and move around are going to be seen using a wheelchair for their mobility device because wheelchairs have custom accessories (e.g. seat cushions, backrests, individual foot rests) designed to maintain all day support and body integrity. Most scooters I’ve seen come with a standard foam seat like you see on the captain’s chair on a pontoon boat, a flat floor surface for the feet, and steering handles. Everything about it screams ‘temporary ride.’

Now I have over thirteen years worth of experience in the disability world and thus a much more sophisticated eye when it comes to spotting the intricacies of other disabilities. So I could quickly assess that this particular scooter woman appeared to be mostly able-bodied due to the fact that she had full hand function and because one of her feet was casually cocked up on the right front of her scooter (i.e. she could move her legs). But I would venture to say that if your average person with no experience with disabilities whatsoever looked at me in my wheelchair and then another person in a scooter right next to me they would probably see that we both were sitting, we both weren’t walking, and we both were riding four wheeled mobility devices and they would no doubt just surmise that we both have the “same thing going on” disability-wise.

So when I see what under a pretty objective set circumstances appears to be a mostly able-bodied person on a scooter, coming from the wheelchair section, weaving people aggressively down the ramp, rudely saying ‘excuse me’ (she wasn’t but I’ve seen plenty of people do that before), forcing me inside so she can pass me, running full tilt with lots of people around, cutting people off, etc. and catching looks from “average” people that range from an eyebrow raise to an angry ‘what the heck?’ it always bothers me because I feel like she’s giving those of us with significant, permanent disabilities a bit of a bad wrap as well without being “qualified” to do so.

For the record, I do not subscribe to the tenets of this wheelchair-scooter rivalry alone. And according to a fellow quadriplegic blogger I follow occasionally I'm even involved in a quadriplegic-paraplegic rivalry I was previously unaware of (in short, they can grasp stuff with their hands, we cant; they can fully care for themselves, we can’t; we’re lazy because most of us use power chairs, they push themselves with manual chairs; etc.). But the bottom line is that as long as the “scooter chicks” of the world want to get all DAYS OF THUNDER on me as I leave the hallowed halls of Camp Randall Stadium, my place of personal catharsis and sanctitude, then the rivalry will continue to reign supreme!