New EasyStand Blog post: 17 Things I’ve Learned Since My SCI

In my latest EasyStand Blog post I cover the 17 Things I’ve Learned Since My SCI. It’s the longest post (or at least second longest) I wrote for them, but I took an in depth analysis of a lot of ups and downs of 17 years worth of living with a spinal cord injury. Cheers.

New EasyStand Blog post: Quad Kryptonite: ATMs

My latest EasyStand Blog post covers my difficulty with using ATMs since I became a quad. Please check out "Quad Kryptonite: ATMs."

New EasyStand Blog Post: Trying Hard Not to Ask “Why Me?”

My new EasyStand Blog guest post covers the issue of trying not to ask “why me?” when it has come to my spinal cord injury and other things that have been disability lifestyle related. Please check out “Trying Hard Not to Ask “Why Me?”

Eric LeGrand Honored on SI Cover

Since last fall many of us in the spinal cord injury community have been following the recovery of Eric LeGrand, he being the subject of an ongoing highly publicized SCI story. Especially as it touches the sports world. As I briefly wrote in this post last year LeGrand is a former Rutgers defensive tackle who sustained a SCI making a special teams tackle and is now a quad. Since sustaining his SCI he continues to work hard in rehab, has gone back to school, does Rutgers football analyst work, and remains steadfastly confident that he will walk again someday. A few weeks ago it was reported the he can now sit up on his own for brief moments at a time.

In a touching moment before the Rutgers-West Virginia game on October 29th, LeGrand lead the team out of the tunnel and onto the field in the snow in what was his first time back on the field since sustaining his SCI. Last week a cool picture taken that day made the cover of Sports Illustrated’s pictures of the year issue. In fact, LeGrand leading the team onto the field was the primary subject of the issue’s cover story, which was voted as the fan’s choice for the best moment of 2011. It was one of those rare instances where sports and SCI converge. Good for him.

New EasyStand Blog Guest Post: Fitting Personal Cares in Around the Holidays

My new monthly guest post for the EasyStand Blog covers the challenge of coordinating my personal care schedule around the holidays. It’s one of those hidden things that I, along with many other people with disabilities have to coordinate. Please give it a read: Fitting Personal Cares in Around the Holidays.

Belated Thanks to Kevin Sullivan, and R.I.P.

When I started law school in 2003 I moved away from home for the first time, going from Eau Claire, WI, a city of about 68,000, to Minneapolis, MN, one of the largest urban metropolises in the country. It also meant that I moved out of my parent’s house—a very safe, comfortable, accessible, and above all, insulated environment—for the very first time as well. That said, when I moved to Minneapolis I faced three major hurdles to striking out on my own: 1) finding fully accessible housing (with indoor parking) that would allow me to live my lifestyle safely and comfortably, 2) figuring out who would help me out with my personal cares in the morning, and be readily available if I needed extra help at any point during the rest of the day as well, and 3) how I would get gas for my van since I couldn’t fill my tank on my own and my parents, sister, friends, etc. who helped me around Eau Claire were 90 minutes away.

On Thursday August 21, 2003—the very same day that I started law school classes (a nasty bout of cellulitis and a blood clot on my lower right leg had me hospitalized for five days and delayed my move to Minneapolis by three days) I moved into the rehab residence at the Courage Center in Golden Valley, MN on a temporary basis while waiting hurry-up-and-wait style for my name to work it’s way up to the top of the waiting lists of about a dozen buildings that had wheelchair  accessible apartments. Unfortunately, they were in high demand with slow turnover. At the time having to live at Courage felt like a step backwards because I went from a mostly private apartment-like setting to a quasi-hospital rehab setting that I graduated from seven years prior. But it was a good transitional environment with nursing and attendant care staff on hand 24 hours a day. Within a week of moving in I drove around the area surrounding Courage on a night off from classes to familiarize myself with my new neighborhood and discovered a mom and pop style full service gas station called the Robbinsdale Oil Company, so that was a huge relief. I still use it as my primary gas station too.

Early that November my name finally got to the top of the waiting list at an apartment building with a new unit opening and I got a move in date of November 14. While I was just starting to try to figure out the personal care attendant (PCA) hurdle, which had to be set up by the time I moved in of course, my good friend Kurt, who was the Courage Center residence intake coordinator at the time, suggested that I go with In Home Personal Care. He told me that it was a high quality PCA company that was founded  by a quadriplegic named Kevin Sullivan. As soon as he said the word “quadriplegic” I didn’t need to hear any more: In Home it was. I figured that any PCA company founded by a fellow quad a) had instant credibility and b) would be specifically tailored to suit all of my personal care needs, because with us having similar disabilities it was practically guaranteed that any personal cares/daily tasks that he needed help with I did too. In fact, when you get put on hold when you call the company part of the message loop featured his voice in very Hair Club For Men ad-like fashion essentially saying “…and I’m also a client…” Within days I had made contact and was promptly brought into the fold. And I’ve been a client of the company ever since.

That is why I was saddened to hear of the passing of Kevin in June.* I still don’t know any details about the cause of his death other than the fact that he was found dead in his van in the parking lot of a grocery store. That notion alone made me cringe because the being stuck in my van alone when I really need help in an emergency scenario has run through my mind dozens of times in my fifteen years of being a quad. It’s in those moments that not having full finger function to call 911 really fast, having your wheelchair stuck in the vehicle’s safety lockdown, or to not be able to get the van’s ramp down quickly enough really seem to enhance the difficulties of living with such a disability.

Unfortunately, I never got a chance to meet Kevin either. The closest that I ever got was that I almost talked to him once. I was having nagging difficulties with a few personal care issues and asked for his number from someone in the office so that I could seek advice from someone who had more quad life experience than I did. It never got beyond an exchange of voicemails though. But he seemed like a good guy. I know that he was generous with his clients, giving us Christmas gift packages almost every year, a signed card with a $10 Target gift card inside for birthdays, threw client appreciation summer picnic parties, and got tickets for accessible seats at Minnesota Twins games that clients could use free of charge.

But the company that he founded is great and it has been, and continues to be tailor made to my personal care assistance requirements, and is thus invaluable to letting me live as independently as possible every day. The office is staffed with really great people who are as friendly and professional as they are helpful, and they strive to ensure that my PCA needs are covered as well as possible. Whether I need a PCA for a new permanent shift, a temporary fill-in, an on call visit, or a replacement in a pinch when someone can’t make it to my place in the morning the office has always staffed me adequately and efficiently. And that is guided by Kevin’s vision for the company.

But the key component is that In Home puts the ultimate PCA personnel power into my hands, which is the way that it should be in my opinion. When I lived at home in Eau Claire the only PCA agency in town was a home healthcare unit that was run through a local a hospital and they did all of the personnel scheduling, so most mornings I didn’t know which home health aide, good or bad, was coming to help me in the morning until they arrived, and that was very frustrating. By contrast, at In Home they do all the behind the scenes stuff like advertising, hiring, background checks, training, etc. but I do the more personal interview and decide who comes in to help me and when I want them to show up. That way it ensures that I get help from competent PCAs who can handle my routine successfully, and that I can get along with day seven days a week. It’s been a great partnership and I have Kevin to thank for that.

Above all, Kevin Sullivan’s advocacy for supreme independence and his business acumen for starting and building In Home Personal Care to what it is today are something to be admired. And the great news going forward is that the day to day operations of the company will continue to run uninterrupted and stay committed to Kevin’s vision of providing quality personal care services to people with disabilities.

May he rest in peace.

(*A virus left my computer—and a large portion of the draft of this post—out of commission for the better part of this past month or this would have gone up more timely.)

New EasyStand Guest Blog Post: The Challenge of Looking My Best

My new guest post for the EasyStand Blog went live today. I discuss how it can be a challenge for me to look my best wearing clothes on account of my SCI. So please check out: The Challenge of Looking My Best.

New EasyStand Blog Guest Post: Why I Have No Use For Change in My Life

My new guest post for the EasyStand Blog went live today. I explain why because of my limited quadriplegic manual dexterity I have virtually no use for pocket change in my life.

So please check out Why I Have No Use For Change in My Life.

No Free Rides Podcast Guest

Living this spinal cord injury quadriplegic disability lifestyle for almost fifteen years now I have met a lot of interesting people and have had a lot of unique experiences. Late last week was truly another disability related experience for the books because I was invited to be a featured guest on my new friend and fellow quad Tiffiny Carlson’s podcast No Free Rides, which is a fun and edgy podcast for people with disabilities. Tiff lives in Minneapolis and is a freelance writer and blogger who is featured on publications like New Mobility Magazine, NM’s new blog Spin 2.0, and a fellow guest blog post writer on the EasyStand Blog. All in all she’s been in the blogger game for over eight years now and has an innovative website of her own that covers a variety of disability topics called BeautyAbility.com.

Anyway, Tiff’s had some pretty big name folks in the disability world on her podcast so it was cool and flattering just to be asked. We had a great discussion that covered a myriad of topics such as coping with disability, my career and job search, me starting the Minnesota Spinal Cord Injury Association, movies, dating, etc. It was fun talking shop with someone else with a wealth of SCI-disability experience. So big thanks again to Tiff for the invite! We’ve already kicked around the prospect of me becoming a regular guest, so that should be cool.

So check out my No Free Rides podcast with Tiff if you're down!

I should also add that the dating post that I reference a number of times throughout the podcast is my most recent EasyStand Blog guest post.

New EasyStand Blog Guest Post: This Guy’s Take on Dating With a Disability

My new guest post on the EasyStand Blog went live today. I share a guy’s perspective on the challenges of dating with a disability. So please check out: This Guy’s Take on Dating With a Disability.

The Unexpectedly Inaccessible Vagina Monologues

In true outside of the box things that guys do to spend some time with a girl they like fashion I got talked into going to see a performance of “The Vagina Monologues” at Augsburg College in Minneapolis this past Sunday afternoon. “The Vagina Monologues” is a play created by Eve Ensler that is about female empowerment and individuality and is performed on Valentine’s Day in an effort to bring awareness to and end violence against women. Prior to that I had heard about it, seen small excerpts of it, and had a decent grasp of the gist of it, but it was something that I would have never considered checking out on my own, either in person or on video format, without some considerable coaxing—more likely than not in the from a pretty girl. Otherwise, my life would have seemingly carried on just fine without it. More than anything I figured that the subject matter by itself, let alone the the multiple recitations of the word vagina, would have me squirming uncomfortably in my seat. But, with the right kind of arm twisting, and me being game to try new things, I was soon all set to get my v-word on.

When going to any new venue for the first time questions of accessible parking, building access, and comfortable accessible seating inside immediately spring up. Since the campus music hall was quite literally a hop, skip, and a jump from my apartment building I scouted it out the day before while I was running errands. I quickly assessed that finding accessible parking was going to be an issue. One-way streets limited sidewalk parking options, nearby parking lots required campus parking permits, and most of the spots right by the building labeled for accessibility were “transfer only.” We could have just as easily walked/rolled there from my place but decided to drive and ended up parking “illegally” in a handicapped parking spot that required an Augsburg College permit, hoping they’d be lax about such violations on the weekend. (They were.)

As we approached the building I immediately discovered that there was no automatic accessible door opener, which is always annoying. Then worse, when we got inside the auditorium there was no wheelchair accessible seating. In those situations the three seating options are: 1) Sit all the way up at the front, which sucks because by the time you’re clear of the leg room of the people sitting in the front row you’re practically on the stage. My joke was that if we sat all the way up there that we would practically be able to smell the Vagina Monologues. 2) Sit in the aisles somewhere, but that was an extra challenge for us since there were two wheelchairs in our group of three. So not only would we have maybe blocked too much of the aisle, but one of us would have had to sit slightly separate from the group. 3) Sit at the very back, which in this case actually meant sitting behind the very back row. We decided on a hybrid seating formation by sitting in the back row but with both wheelchairs parked diagonally on each side of the aisle. What I found interesting was what a deterrent our partial aisle blockage created. Many people intending on going down our aisle to get to their seats would see us sitting there, stop dead, start going up the opposite aisle, and then all the way across rows of seats instead. It was an impromptu social experiment of sorts.

Now other than pointing out that some moron brought along her young child to such an adult show, and at one point let her run up and down the aisle making a slight racket (after a while she left the room, the door was closed behind her, and she didn’t return), that is the direction that I thought this post was going to go in. I thought that I was going to be taking the concept of building and auditorium inaccessibility, sprinkle in some past relatable experiences, and analyze the whole thing like I’ve done numerous times over in the past on this blog. Next thing I know, often to my own great surprise, I’ve banged out over a thousand words about the kinds of gloves I’ve worn in the past, or how I make mac and cheese, and wonder if I’m the only one who has found the material interesting. At the least, it’s a perpetual exercise of catharsis.

But all that changed shortly after the show began, when I found myself squirming awkwardly in my seat for a whole different and unexpected reason: out of nowhere I started feeling quite a bit sexually inadequate. The show itself is split almost equally between serious monologues of vagina related issues like female empowerment, loss of virginity, menstruation, birth, rape, etc. and more upbeat topics like alternative labels for vaginas, grooming, reclaiming the “c-word,” lesbian encounters, discussions about both hot and awkward sexual encounters, and demonstrations of various orgasm types. It was the more supercharged sexual stuff that spontaneously stoked some sexual self-consciousness in me.

To wit, in the show’s first segment all the ladies, the monologue-ers if you will, went over a variety of things that their vaginas would say if they could talk, and the sexual oratory included things like “yes,” “more,” “harder,” “faster,” “don’t stop,” “this way not that way,” “that’s the spot,” “yummy,” “yes, please,” “f—k me!,” “oh s—t!,” etc. Then later on in what was easily the most fun and entertaining segment of the performance one of the monologue-ers does a solid five minute, enthusiastic, and borderline graphic oral demonstration of the various types of female orgasms, and the applicable moans they induce, along with physical demonstrations of the multiple sexual positions that apply, such as the “rapid fire,” “the diva” (i.e. missionary position where one leg kicks straight up in the air at the magic point), “the barker,” the “triple-multiple Big O”, etc. Everyone in the audience went nuts, but much more so it was the ladies who were clapping, whistling, cheering, whooping, and hollering, with one catching the implied “O” spirit more than anyone and she yelled out, “Yeah, you go girl!” Presumably, plenty of the ladies in the audience were living momentarily, vicariously through the monologue-er and/or instantaneously fantasizing/reflecting on their own sexual experiences. Because really, what woman doesn’t want a marathon session with sexy sculpted gentlemen giving them “the diva”?

But I couldn’t help but sit there and think, “Well I can’t do that anymore, or that, or that…” and it was suddenly very sobering. Because when you are a spinal cord injury quadriplegic who is paralyzed from the chest down, having physical, full body, multi-positional, all over the room sexual activity is just not in the cards, despite the extreme want for it. Moreover, by definition of this disability there is a certain amount of sexual dysfunction involved as well. It’s disappointing, it’s frustrating, it’s difficult to deal with at times, etc., but it’s just another unfortunate aspect of this particular lifestyle. It is what it is.

Other than some very limited horsing around that I did with my then girlfriend in the hospital after my SCI, which is really hard to do when a hospital bed is involved and nurses and family can come in at any moment (i.e. frustrating!), my first true exposure to post-SCI sex and sexuality issues wouldn’t come until I was almost discharged from rehab from Craig Hospital. All residents that were within their last two weeks of rehab were put into this extra daily class that was sort of a “here’s all the other SCI related things that didn’t come up in PT or OT that you need to know before you go home” unit. One very uncomfortable day was all about post-SCI sex. First, we talked generals about dealing with the mechanics of post-SCI sex: the realistic levels of sexual dysfunction and impotence, the difficulties/frustrations of achieving/maintaining erections for men, the inability for women’s bodies to produce natural sexual lubricant, about the lack of sexual sensitivity/pleasure, that orgasms can result in autonomic dysreflexia, that male ejaculate can possibly be differently colored due to the body’s lack of regular expulsion, etc. Then we watched an educational film that can best be described as cripple porn, that showed a handful of couples in various disability combinations (e.g. SCI guy and able-bodied wife, a couple that both have SCI) doing fairly graphic couple sex stuff. (FYI not a recommended watch. Nope.) Then third, the guys and the girls went to separate rooms to talk shop in more of an open, candid, and comfortable setting.

In my room it was me—an eighteen year old with a girlfriend—a late twenties paraplegic who was engaged to a very cute and supportive blond, a forty-something para who was married with three young kids, and the token quad who was “in the know” about SCI sex and alternative SCI sexual techniques. After he asked if we had any questions thus far about the lecture or video, which we didn’t because it was awkward, one by one he started pulling things out of this small black magic sex satchel. He started off by saying that if you were lucky enough to achieve/maintain an erection then more power to you. But for those who struggled, the alternative options included Viagra (or Cialis, et al), which doesn’t always work for SCI folks; a vacuum pump a la the Swedish pump that Austin Powers tried to deny “wasn’t his bag, baby”; an electro stimulant, which seemed more like a cattle prod for your junk than anything; using vibrators or dildos in lieu of the impotent/flaccid penis (if that’s the case); and most invasive of all, a surgical procedure that places small balloons in the spongy material of the penis shaft so that when you want to achieve an erection you use an external pump to fill up the balloons. Once he took us through the paces he finally said something like, “Honestly, talking about half this stuff freaks me out a little but I have lay out all the options for you” and we all let out a collective sigh because we were all thinking the same thing. But the point is that many quads have to jump through some wild hoops just to be able to have sex, and that can make people feel unattractive, unsatisfying, and asexual.

Now that being said, it is not by any means to suggest that quads can’t have healthy, active, successful, mutually pleasurable sex lives, even involving sessions that include some mind blowing stuff. But by the same token it does, unfortunately, have it’s limits. Again, because the whole body isn’t involved and the mechanics are a little different. For example, unrelated things going on with the body (e.g. bladder issues) can spoil the fun at inopportune times. Without that direct nerve/sensory/passion/emotional connection between the brain and the penis it means that even hot and heavy make out/foreplay sessions may not result in an erection the way it does with able-bodied guys, which in turn can lead to embarrassing and sympathetic “Hey it happens to other guys too” territory or unintentionally leaves the impression that you’re not turned on by the girl. Clearly, locations where you can have sex are limited, so by default that takes away some of the excitement and spontaneity of the act. All in all it requires a partner who is patient, understanding, and open minded.

The other relatable perspective quickly worth mentioning is the feeling, depending on how much you choose to dwell on it, that you won’t and don’t stack up in the overall sexy, exciting, satisfying, performance category with other able-bodied guys. An unfair comparison from jump street to be sure, but one that naturally exists nonetheless. But the bottom line notion is that everyone wants to fully satisfy their mate, or that should be one of the primary goals in my opinion, and it’s real hard to not feel like the aforementioned limits prevent that for quads. Moreover, even if things are really, really, satisfactorily great in that department with your girlfriend/wife the very realistic reality that you will doubtfully be the best she’s ever had can be difficult to deal with as well.

So cutting back the to the show, all those interrelating thoughts and issues hit me out of nowhere mid-performance and it was unexpectedly quite a bummer. And being there with someone that I was attracted to somehow seemed to heighten those uncomfortable moments and inadequate feelings from my perspective. All of that being said, as we left the show I felt thoroughly entertained and I was real glad that I checked it out, but at the same time I couldn’t help but wonder if the subject matter of the “The Vagina Monologues” was just as inaccessible as the venue that hosted it.

On “Glee,” Dreams, and SCI Therapies

I will admit at the onset that this post is quite belated. I meant to finish and post it about a week after my last “Glee” post went up this past May so that there was much more congruency and relatability but I kept writing about other stuff instead and it kept getting pushed back. I also realize that proceeding to write a second pretty detailed blog post about “Glee” doesn’t exactly backup my previous denial of being a “Gleek.” A super fan of the show I still am not but I do continue to watch regularly, if anything because from my perspective I have found the show to be an interesting case study on spinal cord injuries in a number of ways.

For example, last time I broke down the controversy and discussed my thoughts involved with the fact that an actor who is able-bodied is playing the part of the paraplegic character, Artie. Many people in the disability world have been up in arms over such a notion, especially when it is such a featured character on such an mammothly popular TV show. To wit, check out all the articles I cited last time plus this pretty detailed and critical article about the Artie able-bodied actor dichotomy, how he does a poor job making himself a believable paraplegic and regular wheelchair user, and the show’s handling and portrayal of disabilities in general.

By extension, the focus of this post revolves around a few things that came to light in last spring’s “Dream On” episode, namely dreams and SCI therapies. Towards the beginning of the episode each glee club student is implored to write down their dreams on a piece of paper. One of the girl characters named Tina asks Artie what he wrote down, and with a little more urging he responded that his dream is to dance, but then quickly adds that it’s a stupid dream because it will never come true on account of the paralysis to his lower extremities. She also asks him to do a partners dance routine with her, which leads to some awkward and unsuccessful attempts. On both accounts Artie ends up wanting to be left alone, presumably feeling inadequate as both a person and a boyfriend. Later that day or the next day (I forget which) Tina approaches Artie with an armful of the latest research materials on therapies that could assist him in walking again. At that point Artie demurs but on account of her enthusiasm he takes the materials anyway.

Now when TV shows and movies start dipping into that “magic SCI therapies” territory it makes me (and I assume a lot of other people with actual SCI) cringe because it seems like a lot of times they do one of two things: 1) They give the impression that healing paralysis is simply a matter of getting the right kind of therapy, glossing over the fact that in most cases it’s a permanent diagnosis until scientific breakthroughs (e.g. stem cell research) result in a viable cure. 2) They suggest that living with paralysis is a below average, unhappy, day in and day out depressing lifestyle. Case and point to the latter theme: the premise at the end of the movie MILLION DOLLAR BABY that the Maggie character would much rather die than live the rest of her life as a quadriplegic, which was offensive to many people living with paralysis. Arguably, the most widely seen example of the former theme was the sub-plot in AVATAR that if the paraplegic character Jake successfully infiltrated the Na’vi people via his avatar technology and fed Colonel Miles insider information that Miles would ensure that Jake “got his legs back,” as if it were just that simple. And might I quickly add, no cure for paralysis all those years in the future? Man let’s hope not!

Back to the episode, now full of hope Artie visits the school counselor, Emma, to talk to her about said therapies. Where I thought the show did a good job was how Emma interjected a solid dose of reality, reminding Artie that he had sustained a pretty serious spinal cord injury and that there weren’t a lot of special therapies that were going to get him walking again right away, if ever. Now with Artie’s bubble burst, he leaves the therapy materials behind in Emma’s office, turns around and wheels out like a depressed sad sack, presumably having given up hope. That ties into the second TV/movie theme that I just mentioned above.

Smash cut to a little bit later in the episode and we find Artie shopping at the mall. Tina approaches him and he seems to be in much improved spirits. He quickly mentions that he took her advice and saw the therapists and that his therapy was going far better than expected. Then the camera pans down to Artie’s feet where you not only see one foot start to move, but then both feet come off of his wheelchair foot cage. At that moment I remember thinking, “What? No f------g way!” Then he proceeds to not only stand up from his chair, but he breaks into a full song and dance routine featuring the song “Safety Dance” by Men Without Hats. When the flash mob style mall dance party ends it quickly cuts back to Artie sitting back in his wheelchair and it’s revealed that the whole sequence was just Artie’s daydream. Here’s a link to the video, but it starts after Artie stands up from his wheelchair chair and ends a split second after he plops back down in his chair.

To many people in the disability community that whole dance sequence exacerbated the able-bodied actor playing a person with a disability controversy. Many of the comments that I’ve read about it described that sequence as offensive to SCI wheelchair users. Specifically, that “Glee” and the able-bodied actor playing Artie were throwing the fact that he didn’t really have a disability in the faces of all of us who really do.

Being in a relatable position I can clearly understand where those gripes are coming from. But after factoring in the scene in its entirety I ultimately came down on the side that I didn’t have a problem with it. The main reason for that is that based on my life’s own SCI experiences I found that kind of sequence quite realistic because I daydream about doing able-bodied things all the time. And much like the Artie dance sequence, those daydreams can be triggered by numerous situations in numerous locations, and can also involve very lengthy, detailed brain-fueled scenarios.

For example, during the summer I often daydream about the ability to dive in the lake at my parent’s cabin to cool off. When finding accessible parking is a pain in the ass or other similarly inaccessible situations creep up I daydream about parking anywhere I want and having unlimited access. Almost every time I’m around my niece and nephew I fantasize about getting to be more active with them and babysitting them on my own (for more about that see my post on the EasyStand Blog about being an uncle with SCI). Getting in and out of bed with ease on my own is a common one. Going on vacation or a lengthy road trip untethered from all the things that make it difficult springs up fairly often as well.

Being single for as long as I have a whole plethora of my able-bodied daydreams revolve around women: the want to be more approachable without the wheelchair;  showing off the buff bod I no longer have; the desire to sit or cuddle up next to a girl on the couch or other close contact situations to more easily be able to start generating that subtly obvious “I like you” chemistry; being more of a helping hand when it comes to moving or home repair type situations that score you close, one on one time; being able to stop by her place whenever I want without stairs or other inaccessible obstacles preventing it; opening the door or pulling her chair out on a date instead of vice versa; being able to step in to plant a kiss on her instead of needing her to bend down to my level first, which also often quasi-requires her to make the first move; etc. Whenever I’ve felt like I’ve been passed over for someone who’s able-bodied in terms of a potential relationship, those “I wish I could have been able to do more able-bodied things to ‘woo’ her” daydream thoughts tend to kick into a higher gear, whether disability was a factor in her decision or not. It’s just the nature of the beast.

Related, one of my most recent guest posts on the EasyStand Blog was about what I would do if I could utilize virtual reality technology to do able-bodied things, and since all of those items apply to the aforementioned daydream list I refer readers to that post for my more detailed thoughts on the matter.

My point is that I didn’t have a problem with the Artie daydream dance sequence because it’s deeply rooted in my own reality. Moreover, I would say that well over half of the night time dreams that I’ve had since sustaining my spinal cord injury have consisted of me being in some form of able bodied state, and I think that is a common thing with many other SCI folks as well. Christopher Reeves used to say that his dreams always consisted of him walking around. When you’ve lived an able bodied life for a certain period of time the “dream zone” of your brain doesn’t exactly switch to a strictly SCI-disability perspective automatically.

I slept awful for the first few weeks right after my diving accident and not very well for up to a few months later either because I was predominantly a stomach sleeper most of my life and I had a hard time being forced to sleep on my back every night in the hospital. Thus I rarely dreamed because I didn’t hit that REM sleep zone when I was constantly sleeping like crap. But once I adjusted my dreams were always fully able-bodied and it was a major bummer to dream about doing fun high school things with my friends then wake up to a quadriplegic body in a hospital bed. But as time went by over the years I just got more and more used to it and adjusted to it. I’ve gotten to a point now where if I have a good able-bodied dream I can wake up and go, “Damn, that was a good one” or “That would have been fun if it was real.” I would say that the most common dream theme I have involves me standing up from my wheelchair, walking away and looking back at it thinking, “Well that was easy, why haven’t I tried that before?” Another common theme has me able to easily roll my wheelchair up stairs like an ATV, and again I find myself wondering why I don’t do that more often. Not quite an able-bodied thing but still extends beyond straight disability.

But the more interesting thing is that armed with fourteen plus year’s worth of SCI life experience, over the last few years my dreams have more often than not taken on more of an SCI/able-bodied hybrid form. So a frequent dream sequence will start with me walking around, etc. but then the logical portion of my subconscious must kick in and brings me back to the SCI world. So I might suddenly think to myself in my dream “Wait I can’t go down these stairs.” A lot of times if I have to go to the bathroom in my dreams it’s still not by standing over the toilet to take a leak like normal, and I still search out an accessible bathroom situation. Or if it it’s a sex dream they often don’t involve a lot of lower body sensational pleasure because I’ve found that if I can’t feel parts of my body in real life, in that case my “man bits,” then I usually don’t in my dreams either.

The best example of the latter is a dream I had recently. I was hanging out a pool with some friends and my sister and I had a “Screw it, it’s been fourteen years and I’m finally going for a swim” moment. I threw off my shirt and walked to the edge of the pool. Behind me I heard my sister say, “Good for him” because in a lot of respects I’ve always limited myself in what I can and can’t do with my disability, as well as been pretty guarded about bodily things I’m self-conscious about vis a vis my SCI. In this particular dream’s case, the scars on my torso from chest tubes that were put in for both my pre- and post-SCI collapsed lung surgeries, the big gross scar on the back of my neck from my neck fusion surgery, and the “quad gut” that has me looking a few months pregnant. In that dream I just let it all hang out and dove in the water. But although in the dream I was gliding through the water with full able-bodied ease, I could only feel the coolness of the pool water on my face, neck, hands, arms, and chest above the nipple line, as is the case with my level of sensitivity in real life. Those kinds of dreams are very strange and interesting though obviously, both to have and to wake up from.

The last Artie, SCI therapies, “Glee” issue to quickly cover came up in this season’s “A Very Glee Christmas” episode. Artie’s aloof girlfriend, who inexplicably still believes in Santa Claus, tells a a mall Santa that all she wants for Christmas is for Artie to walk again, and he agrees, which sets up an awkward plotline inside and outside of the episode. At the end of the episode we find Artie wearing a pair of mechanical legs and in Christmas miracle fashion he is able to stand up and walk. I would have called BS on that too had I not already seen this cool video of paraplegics regaining the ability to walk via mechanical eLEGS from Berkeley Bionics. Can’t wait for the quadriplegic version to come out!

If any more interesting “Glee” SCI related issues come up on the show you can bet that I’ll cover it.

Apparently, I’m “Gettin’ It Done”

I have a hard time doing anything that comes across as me patting myself on the back, but in this rare instance it is worth noting that my friends at the Sam Schmidt Paralysis Foundation just started a new column about people with spinal cord injuries who are "Gettin' It Done." I was one of the first four people featured, describing me as a good guy attorney and this blog as "useful and always entertaining." It was a cool surprise. My great thanks to the fine folks at the SSPF. You can check out the blurb at the following link: http://www.samschmidt.org/news/news5_191

Quad Engineering: Making Mac & Cheese

The fact that I am taking the time to write a blog post about making Mac & Cheese makes me feel like I am twelve years old, yet at the same time the foregoing almost perfectly demonstrates a microcosm of my perpetual lack of even simple culinary skills on account of having paralyzed quadriplegic hands with no voluntary finger movement. Even at thirty-two years old, like any red blooded American, I can get some pretty mad hankerings for Kraft Macaroni & Cheese every now and again. I say Kraft brand Mac & Cheese because although my pallet has discriminated against the generic kinds less and less as I’ve gotten older, Kraft is still the best by far, and as much as possible that’s still the kind I’m eating.

But for the better part of a decade now I’ve been largely deprived of that good stuff because I haven’t been able to prepare it myself. The main culprit has always been the part of the preparation process that involves taking the pot with scalding hot water off the hot stove, moving it to the sink and pouring the hot contents it into a strainer, and then putting the hot pot and noodles back on the stove. It’s a key step that I haven’t been able to do on my own. If the sink is across the room from the stove, as was the case when I lived with my parents through college, then the only way I could strain the pot would be to carry it on my lap from one side of the room to the other. That’s not happening. Similarly, if the sink and stove share the same stretch of counter, as is the case in my current apartment, sliding the pot off the stove burner and down the counter to the sink still leaves my lap vulnerable to potential burns if the pot tips or water spills out. That aside, with very limited grasping ability the act of tilting the pot to dump out the water and noodles leaves my hands vulnerable to burns from the outer edge of the pot as well.

So making mac & cheese on my own has been a no go for over fourteen years. Instead, I’ve had to have family or PCAs do it for me, which has always felt very limiting. But all that changed a few months ago thanks to a little quad engineering. I was making something for dinner that involved scooping hot, wet food with a strainer spoon and suddenly it hit me that I could use that same spoon to scoop the mac & cheese noodles from the pot with the hot water to a second pot to finish the cooking process, thereby eliminating the need to move a hot pot of water over to the sink to strain the noodles. So I tried it and it worked pretty well, except for the highly tedious process of fishing noodles out of the pot with hot water spoonful by spoonful.

The second time I made it I used much less water to cook and soften the noodles so that made it a little bit less of a fight to fish the noodles out, but needing to use about twenty five total spoonfuls to transfer them all was still annoying. But I was actually making mac & cheese entirely on my own so I didn’t care. The third time I made it I couldn’t grab the big cooking pot out of the cabinet below my stove so I cut to the chase with the smaller pot I had been using just to mix the cheese, butter, and milk with the noodles in the second cooking phase. That pot was small enough to slide it safely across my counter from the burner to the sink, then I used the handle to tip the pot and pour out the hot water into my sink. Unlike my bigger cooking pot, which has two stubby hand holds on the sides, the longer handle on the smaller pot allows me to keep my hands away from the hot pot surface while I dump the water. Then I slid it back to the stove and finished the job. And that’s how I’ve been making mac & cheese ever since because it’s eliminated the strained spoon transfer step.

So just like that, with a little quad engineering making a meal that once seemed impossible to prepare on my own has suddenly become very routine. At the least, it’s been fun getting the chance to eat like a teenager much more often on my own terms. Next up: trying to figure out how to cook with the oven without burning myself. Then I’ll really start kicking some solo culinary ass.

New EasyStand Blog Guest Post: Like, Totally 80’s Music Video Based Disability Perspective

My latest guest post on the EasyStand Blog went live today. I turn an aspect of a classic 80's music video into a statement of my very unique "2-way mirror" disability/able-bodied life perspective on account of my SCI.

So please check it out: Like, Totally 80’s Music Video Based Disability Perspective.

Recalling My Very Wild and Unusual Attorney Swear In Ceremony

In every lifetime there are those moments or events where you just want everything to go perfectly as planned. These typically include things like graduation day, a first date with someone you’re crazy about, your marriage proposal, your wedding day, a job interview, a public speaking event, etc. For me, getting sworn in as an attorney was one of those big deal life events where I hoped things would fall right into place. Three years ago today, on December 11, 2007, I was sworn in as a licensed Minnesota attorney in front of the Minnesota Supreme Court. It was a proud day for both me and my family. Not only was it the culmination of four tough years of law school and the passing of the bar exam, but a pretty cool legal right of passage to boot.

But unfortunately having it all go off without a hitch wasn’t in the cards that day. Far from it as it were. Because when you live my lifestyle inexplicable and unexpected things related to my spinal cord injury and/or wheelchair tend to spring up at the most inopportune times. Thus December 11, 2007 became “one of those days” at the worst time possible.

The ceremony was scheduled to begin sharply at 3 pm in the main courtroom of the Minnesota Supreme Court building, which was pretty iconic stuff. I was actually supposed arrive at least fifteen minutes early to sign the requisite paperwork and get situated. The first mistake that I made was having my family drive past the court building in St. Paul to meet me at my apartment in Minneapolis first. I needed help with my suit and tie and they hit traffic, so we didn’t end up parking by the courthouse until 2:45 when I was already supposed to be inside. As a result, I was feeling really rushed.

On top of that I had never been to the Minnesota Supreme Court building before so I didn’t know where I was going or where the front entrance was. When you use a wheelchair and the overall accessibility of a building is in question a trick of the trade is to follow the blue wheelchair access/disability signs. Almost all of the time those signs lead the way to the wheelchair accessible entrance. So as I was hauling ass down the sidewalk of what turned out to be the side of the building I saw a disability access sign that pointed to a certain entrance. “This must be it,” I thought. As I approached it and hit the automatic door button nothing happened. We grabbed the handle to pull the door open and it was locked. Next to the door was one of those talk boxes with a red button. So I pushed the button, someone answered, and I said that I used a wheelchair and needed to get in but the door was locked. They buzzed me in. At the least, it was an annoyance that I could have done without on my way into the building.

Now at that point it didn’t make much sense that that was how I would have to enter the building to get to my ceremony. Why would I have to use a small side entrance that had its door locked during the middle of the day? But again, I was in a rush and I was going on past experience and instinct. After all, in the preceding eleven years of using a wheelchair (at that point) I’d already jumped through way crazier hoops just to enter buildings, and with that court building being a bit older it certainly wasn’t out of the realm of possibility that I needed to take an equally roundabout route. So I proceeded.

What made even less sense though was when I got inside the door and immediately found myself at the top of a staircase. “What the f---?” I thought to myself. I looked to my right and there was a wooden closet looking door with the disability access symbol on it so I opened it up to fund a metal dumbwaiter style elevator-lift big enough to fit one wheelchair. It was exactly like the kind I had to use in my university bookstore to get to the lower floor where the books actually were. I can’t begin to explain how hard it was trying to catch the eye of some college cuties when I had to get in a metal box that very obnoxiously went ZZZZZZZZGGGGGGGGHHHHHHHH for a good thirty seconds before it reached the bottom, and vice versa. Very embarrassing.

Now at this point I definitely should have just turned around, gone back out the door I had just come through, and gone down the sidewalk again because there was no way that was the accessible entrance that would take me to the main courtroom of the Minnesota Supreme Court. And as it turns out it wasn’t. But fueled by the fact that I was running late and without giving it a second thought I launched myself into the “elevator,” closed the door behind me, and pressed the down button.

It was pretty much the instant that I hit the button that I had a “I probably shouldn’t be doing this” bad feeling, and sure enough the lift went down about four inches and crapped out. I hit the down button again, nothing. I hit the up button, nothing. Tried them both again, nothing. The emergency button didn’t work either. Great. Already late for what was arguably the biggest event of my life up until that point and I was stuck in some crappy elevator lift I should have known better to not even use in the first place.

Meanwhile, my family was on the floor below waiting for me to come down. Finally, my mom yells out something like, “Are you coming down or what?” I told her I was stuck. I think the response that came back was to try hitting the down button again. I yelled back that I was stuck stuck, as in no buttons worked and I couldn’t move. As everyone came back to the top to see the situation first hand I heard a lady walk in behind me and ask what was going on. My mom told her that I was stuck in the lift. Then she replied, “Oh that thing hasn’t worked for years” and went on her way. well for crying out loud, had ANYBODY thought about posting an “out of order’ sign or something? Unbelievable.

So my now brother-in-law went off to find some maintenance guy to help us and my dad went to let somebody in charge know that I was going to be a little late to the ceremony and to see if they could maybe hold things up for me given the unique circumstances. The longer I was stuck the more pissed off I got. Of all days to get stuck in a broken elevator lift was the one and only day that I would become an official lawyer. What were the odds?

After not too long a wait, albeit by the same token way longer than I’d hoped, the maintenance guy finally showed up. He reiterated that the lift had been broken for quite while. Thanks a pant load for the non-forewarning man! Since he couldn’t get it working again the only solution was to try and pull me out. I couldn’t back out because four inches is too high a threshold to wheel over going either frontwards or backwards with my chair. Also making it no small feat was the fact that my body weight plus my chair weight tops out at around 400 lbs. But between the two of them they were able to lift my back end high enough so I could control my back wheels to help get me back on level ground. Every fiber of my being wanted to bitch him out for not posting some sort of out of order sign, especially since his reaction to me more than implied that it was my fault for getting stuck in the first place, but more than anything I was just relieved to get out and I had to really get moving to get inside.

Down the sidewalk we went again. I got to the corner, hung a left, went about twenty more yards and, duh, there was the main entrance. My dad assured me that they were holding things up for me so that put me at ease a little bit, but my face was red from frustration, my shirt and tie were a little crooked, and in general I felt out of sorts. After I took a moment to straighten out and collect myself in what felt like the longest elevator ride up one floor in history I was finally outside the courtroom entrance.

As I rolled in the doors half embarrassed for being late and half relieved to finally have made it I found myself on the observation level of the courtroom while all the other soon-to-be attorneys attending the ceremony were down on the courtroom floor level. To get down there you had to go through a small swinging door and down a few stairs. So as it turned out although I finally made to the courtroom I still hadn’t actually made it. As all eyes were on me wondering what I was going to do next a courtroom shepherd asked me if I wanted to go down there to join the group. Relieved to finally be in the room but frustrated that the saga continued I said, “That’s ok.” But she assured me that it was just as easy as taking a ramp down the outside of the courtroom to get down there.

So I followed her to the left side of the courtroom where she held open a door for me, told me to go to the bottom of the ramp, and that she would go around and open it up for me. Then I sat there facing the closed door for who knows how long until I heard the door behind me open up again and a voice say, “I’m sorry, that’s not the right way, we actually have to go around to the other side.” Because there wasn’t enough room to turn my chair around I had to back all the way out instead.

As I followed her to the other side it started to feel like I was in the middle of one of those funny ha ha room to room chase sequences like you see on “Scooby Doo” or other similarly replicated comedy montages. By the time I popped out at the bottom of the ramp and entered the courtroom floor the Justice charged with swearing us in was in the middle of his “This is a time-honored profession…” speech. So I was already embarrassed interrupting things, especially with a loud puttering power wheelchair that makes a clickety clack noise whenever it goes in and out of gear. All the other new attorneys were sitting along the outer rim of the courtroom floor and the only spot available was on my end (thankfully) between a lady who pulled her chair over to clear me some room and the courtroom’s witness box. But in order to get myself into position I had to roll through a very tight space between the witness box and a brass bottomed flag stand, and as I squeezed through it my brand new rubber wheelchair tires let out a very loud and mortifying SSQQUUEEKK as they rubbed against the brass, which was essentially the cherry on top of an overall sundae of suck.

Once again I tried to collect myself as coolly and quickly as possible and tried to enjoy the rest of the ceremony as much as I could by putting all of the BS I had just gone through behind me. Obviously, it was a cool thing to be a part of and when I raised my hand and finally got sworn in as a real licensed Minnesota attorney it felt awesome.

After the ceremony everyone lined up to shake the Justice’s hand, chat with him, and get a picture. After everything that I had just been through I was pretty much ready to get the hell out of there and go to dinner, because I don’t remember desperately wanting a drink more at any point in my life. But my parents kind of insisted that we wait around and so we could get a picture with the Justice as well because it could be a something that I would regret not doing someday.

I’m glad I did too because I was last in line so I got some pretty unique one on one time with him. He was actually the Justice that came and spoke in my Criminal Procedure class the fall semester before. That night in class he pretended to punch me in the face while he lead a mini “What is justice?” lecture so I certainly didn’t forget him. When I reminded him of all that he claimed to have recognized me when I rolled into the courtroom. The thing I really thought was cool about him was that he got down on one knee so that he was more on my level to chat with me and take some pictures.

Then the unexpected occurred. With me that day were my parents, my sister, my now brother-in-law (aka my brolaw), and my baby nephew who was eight months old at the time. At some point in true father/grandfather’s pride fashion my dad mentioned to the Justice that my nephew had my name for his middle name. So after that the Justice kept referring to my nephew as “little Shawn.” Then out of nowhere he said, “You know what would make a great picture? If you took little Shawn up above and set him on the court bench.” So my sister and brolaw took my nephew around and sat him down on that Justice’s spot on the supreme court bench and we took a few pictures. Being a Minnesota law historian he then declared that my nephew was the first baby in the history of the Minnesota Supreme Court to sit on the bench. It was pretty awesome. And as it turned out it ended up being a pretty unique and fitting postscript to the whole crazy event.

So as much as I try to plan ahead and play all the angles to prevent wild things from happening, a lot of times the unexpected still wins out and it can be downright tumultuous like it was in this case. But in the end all that matters is that I survived the crappy elevator fiasco, I made it inside for the ceremony better late than never, I still became an officially licensed Minnesota attorney, and in the process we made a little bit of Minnesota Supreme Court history as well. And ultimately, I have a much better story to tell because of it. It also goes without saying that I might not ever be able to look at my attorney’s license card or see the words “Minnesota Supreme Court” and not think about that day.

Quad Farmer Designs a Wheelchair Accessible Tractor

I wanted to draw some attention to this cool AMS Vans Blog post about a quadriplegic farmer who designed a pretty stellar tractor that he can operate from his wheelchair. Good story. Very impressive stuff. More proof that you just can’t count out us quads from executing some pretty incredible feats.

New EasyStand Guest Blog Post: Taking a Stroll Through Virtual Reality

My latest guest post on the EasyStand Blog went live today. I delve into some of the things that I would do if I were to become fully able-bodied again via virtual reality technology.

So please check it out: Taking a Stroll Through Virtual Reality.

Wishing a Full Recovery for Eric LeGrand

In my very last post about the wheelchair user who scored a touchdown I described it as a cool convergence of sports and disability. But unfortunately every yin has its yang, and thus it was with great disappointment that I learned about Rutgers defensive tackle Eric LeGrand, who was paralyzed below the neck after making a tackle against Army this past weekend.  He has since undergone emergency spinal surgery and apparently is in good spirits.

Now in my world the phrase “paralyzed below the neck” is typically synonymous with quadriplegia, so I can only assume that is the kind of recovery that he has in store for him. As daunting and unfortunate as that is there has been some pretty good recent precedent of football players sustaining significant spinal cord injuries and having successful recoveries from them.

In 2000 former Penn State cornerback Adam Taliaferro sustained a SCI at the C-5 level. He was given a 3% chance of walking again but after eight months of rehab he was on his feet again (but never played again). I still remember watching him lead the team onto the field the following football season. It was pretty emotional. Rutgers coach Greg Schiano apparently spoke with mentor and former sideline boss Joe Paterno, who was Taliaferro’s coach at the time of his injury, to pick his brain about how to properly support LeGrand and move forward with the team.

In 2007 Kevin Everett, a reserve tight end for the Buffalo Bills, sustained a SCI while attempting a special teams tackle against the Denver Broncos. He suffered a compression of his C-3 and C-4 vertebrae and initially had no movement in his extremities, which made him a very high level quadriplegic. But immediately after his injury a Bills team physician, Dr. Andrew Cappuccino, decided to do a medical procedure known as cold therapy or hypothermia therapy that reduces the body’s overall temperature via an intravenous cold saline solution and thereby protected Everett’s spinal cord from further swelling and damage. The therapy was developed with a great deal of help from Dr. Barth Green, the president of the Miami Project to Cure Paralysis. Dr. Cappuccino called Dr. Barth after he started the cold therapy. Anyway, it was a risky decision but ultimately was a good move because despite his initial chances of walking being bleak or dismal Everett also went on to be able to walk again.

So LeGrand is currently in a tough spot to be sure. I still vividly recall being in his shoes fourteen years ago: the fear, confusion, frustration, uncertainty, etc. But working in his favor are the facts that he is a conditioned athlete and that he had his injury in a time where there are a litany of medical advancements in the world of SCI. I extend my support and sympathies to both he and his family and hope that he has a full recovery. With some luck he might even end up like Taliaferro and Everett.

 

RIP Christopher Reeve: My Personal Encounter with the Man Himself (From the Archives)

Yesterday marked the six year anniversary of Christopher Reeve’s passing. To pay tribute I thought that I would repost what I wrote last year about his impact, the day that I met him, etc., and to continue that practice in future years. The only thing that I will add here at the forefront is that within sixteen hours or so of making that post live I got an email from Christopher Reeve’s daughter, which was obviously a great surprise. I won’t get into the details in order to preserve what was a private, special exchange, but in short she thanked me for writing the post, for keeping her dad’s memory alive, that my intuition about him was correct that day, and for respectfully giving him the moment of privacy that you’ll read about further below. The Christopher & Dana Reeve Foundation and fellow Reeve supporters were my target audience with that post, so it was quite shocking to be contacted directly by a member of the Reeve family, let alone so soon after posting it. But I’m glad that it had such a positive impact, and I still consider that the highlight of my writing “career.” You can read the Reeve Foundation post commemorating the sixth anniversary of his passing here or see how people are sharing their thoughts on the subject here. Check out my archived post below:

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 round-trip 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.