New EasyStand Blog post: This Summer Deserves a High-Five

This past summer in Minneapolis was unseasonably cool, and in my last EasyStand Blog post I analyzed the number of ways that, from someone with a spinal cord injury’s perspective, This Summer Deserves a High-Five. Check it out.

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: When the Return to Work is Very Accessible, Plus Some Tidbits on my SCI Turning 17

It’s hard to believe that it has been almost 3 months since my last blog post. I don’t know how many regular readers I have, but I do feel compelled to apologize for leaving everyone hanging for so long. But I started a new job a few months ago, which required a transitionary period, my nonprofit the Minnesota Spinal Cord Injury Association has required some extra work, and I’ve gone through some emotional stuff on top of that. So all that combined has taken me away from some of my blogging duties.

As for the new job, this is a month belated, but my last EasyStand Blog post was the fourth in my workplace accessibility series. This time I wrote about When The Return to Work is Very Accessible. So check that out.

Almost two weeks ago, on July 12th, it was the 17th anniversary of my spinal cord injury. As much each year has passed, July 12th, maybe the most significant date on the calendar for me, has slowly become just another day. But this year was especially tough because the 17th anniversary signifies me being in a wheelchair for equally as long as I was able-bodied. I have quietly been bracing myself for it for a few years. My status update on Facebook that day was “17 years since my paralyzing spinal cord injury at the age of 17. 17 years a stronger, tougher man. And perhaps, 17 years of becoming a better, more well-rounded person because of it.” From initially posting that post, to texts from my family, to the over 100 “Likes” and 14 really sweet and supportive comments that post generated I found myself surprisingly teary-eyed a number of times throughout the day. Check out my original July 12 post here as well as my book excerpt that followed it to get an idea of how far I have come and how much things have changed since then.

Anyway, although it is not a day that I celebrate or commemorate, I do make a point to get out and do something fun. For example, last year a buddy of mine and I went to Psycho Suzie’s Motor Lounge, a really fun pizza joint with an awesome patio dining. scene. I’ve been wanting to go there for over 4 years since I saw it featured on “Diners, Drive-Ins, and Dives” on the Food Network.

Over the past few years the kind of fun that I’ve been able to have, generally, has been limited because I didn’t have a lot of fun money to spend on account of my long, tough job search/unemployment period. But since I’m finally at a company with long-term job security I’ve finally been able to get out there and do more fun things around town without sweating paying for it.

One of those things has been my desire to see more live music concerts around town. So on a lark I looked up the music schedule at the Fine Line Music Café and lo and behold on July 12 an interesting sounding, New Orleans based blues-rock band called Cowboy Mouth was playing there that night. So I got tickets and me and that same buddy, who is a big-time music fan, went. We started the night off at a nearby restaurant called Jackson’s Hole, which was a bit of a country bar/restaurant with patio dining. Then we went a block up the road to the Fine Line.

We got a table right in the middle of the venue and were surprisingly entertained by the opening act, the Odd Fathers. When Cowboy Mouth took the stage the place suddenly filled up. Who knew some band I’ve never heard of had such a huge following? During their first song the lead singer/drummer came out into the crowd and started imploring people to come closer to the stage. He stuck out his hand to my friend and said, “You sir, I’ll make a deal with you—if you come up closer to the stage I promise you that I will give you the best f------g rock show you’ve ever seen!” My buddy immediately flipped his cap around and shook his hand as if to say, “Done and done.”

Then he turned to me and said, “Big guy, how about you, do you think you can come closer too?” I shrugged in “It’s July 12th so what the hell fashion” and started making my move. People in the club started pulling chairs and tables out of the way for me to get through, and every time I stopped the masses kept imploring me to come closer until ultimately the crowd parted like the Red Sea and the next thing I knew I couldn’t have been closer to the stage. And I spent the whole concert there. It was awesome! The band was super entertaining and put on a helluva show. Check out the videos here and here to get a taste for both their music and how close I was all night, and check out this video for another song they performed that I really liked. I’m officially a Cowboy Mouth fan for life. I couldn’t have imagined having a more fun night, and it was probably my best July 12th so far.

Book Excerpt I

For people that don’t know, I’ve always had plans of writing a book about my post-spinal cord injury life’s experiences. For those that do know that it’s become a bit of an inside joke that I am because it has been taking me so long to do it.

The short shrift of my book writing history is that I started writing it the summer after my freshman year of college, but I didn’t get very far because I kept starting over. I picked it up again during the year I took off between college and law school and felt like I got a lot done. I decided that I made more effective use of my time by jumping from topic to topic instead of going from A to Z. That way if I got writer’s block on one topic I could keep momentum going on another. But of the 80 or so pages I wrote that summer I think most of the stuff that I wrote is useless. For example, I can’t imagine people will be too interested in reading the 20 pages that I wrote about getting dumped on prom night—stories that I felt set the stage for where my life was going leading up to my diving accident—but I think that most people will care most about my life post-SCI. That’s where the meat of the story is after all.

Once law school started I didn’t touch it for another five years until after I graduated, passed the bar, became an attorney, then struggled to find work. Someone who’s written a few books once gave me advice to never go back and edit old stuff because you’ll be hard-pressed to keep making forward progress. But I did go against that advice to edit and redo the chapter I wrote about the day of my accident and have it propel me forward from there. That worked for a while. But then I met someone and over the course of our ensuing year-long relationship whatever free time I wasn’t spending with her was spent job searching, a few side legal projects, and some part-time paid legal blog writing on top of my blog post writing for both this blog and the EasyStand Blog. In other words, I didn’t have or make the time for book writing.

But it’s been almost 17 years since my SCI and I’ve been making more of a concerted effort to get this writing done lately. I should have cranked it out by now, really. That said, one of my original visions for this blog was to post the occasional excerpt from my book to drum up interest, get feedback, and keep me motivated on working towards finishing it.

So here we go. This excerpt essentially follows on the heels of my July 12 post, which was only my second post on this blog back in 2009. Because that July 12 post was an edited 2,335 word excerpt of what (as of now) is a 15 page chapter you will see a little overlap between the end of that post and the start of the excerpt below. Also, please keep in mind that this excerpt is “blog post edited” and not “finished product edited.” Cheers, enjoy:

After the X-ray and MRI exams finished I think I was wheeled directly to my intensive care room. I tried my best to relax, but it was hard while also bracing myself for whatever was coming next. After an undetermined amount of time passed a middle-aged man with mostly grey hair walked in like a man on a mission. Without any introduction of any kind he went to the right side of my bed and poked my head near the temple with a sharp skin punch that damn near punctured me down to the skull bone. As he went to follow suit on the other side I don’t remember if I had an audible “Ow, what the hell was that for?!” reaction or if I reacted with shocked silence. Probably a combination of both. Either way, a heads up before he started poking holes in my head would have been nice.

After he was through he finally conceded that he was my new neurologist. He did that to me because he needed to put me in traction for the next few days to keep my neck stable. Traction was an apparatus that had a metal head harness with weights attached to it so that I would have zero movement in my neck and spine while the swelling went down. The screws for the head frame had to practically be screwed into my skull. It was akin to having somebody tighten a vice grip on your head and obviously it hurt like hell. My head throbbed with pain for hours until I just got used to it. Good times. I still have the scars to this day. Hair doesn’t grow on them so whenever I get my hair cut there is no hiding them. Thankfully, they’re only about the size of a pencil eraser but obvious enough that I still get questions about them. They used to really bother me but as the years have gone by I have paid less and less attention to them.

But that would prove to be a foreshadowed microcosm of that doctor’s poor bedside manner. The guy was an ice cold, all business, and arrogant doctor, which was about the last thing that a physically traumatized teenager needed at such a scary juncture. Somewhere around there I was also prescribed some form of steroids to reduce the swelling in my damaged spinal cord.

Prior to putting me into traction he had determined my diagnosis. I had sustained a spinal cord injury predominantly at the c-7 level. Because the impact of my diving accident didn’t sever my spinal cord my SCI was considered an incomplete injury, as compared to a complete injury where the spinal cord is completely severed. The result was that I was significantly paralyzed to a yet to be determined degree. Significant degree was right—I couldn’t move a thing below my shoulders.

Once I was put in traction all of the commotion was essentially over other than the typical, frequent nurse monitoring that goes along with patients in ICU. The only other item of business that was covered that night was scheduling a neck fusion surgery that would clean up the damage and stabilize my neck. That would go down on Monday morning.

I don’t remember anything else notable happening after that. It was too late at night for any of my extended family to make it a worthwhile trip to stop by so I didn’t receive any visitors. My family stuck around for a quite while into the night hours until it didn’t make any sense for them to stay any longer. Since things were still traumatic and touch and go one of my parents, my mom I believe, stayed on a cot in a room down the hall from the ICU and my dad went home with my sister. Eventually, somewhere around midnight I figure, after what felt like hours of stress and commotion that ran the full spectrum of emotions, I must have just passed out from exhaustion. And so the waiting game for major neck fusion surgery—the next marquis event in my life—began.

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I don’t remember how well I slept that night or for how long. But given the circumstances I assume not that well with nurses in my room checking vitals, urine output, and my IV machines about once an hour. Lying flat on my back with my skull bolted onto my bed frame stuck indefinitely in an ICU room is about as far outside my comfort zone of sleeping on my stomach in my own bed at home as it gets. Then again, I was exhausted from all the stress and drama so I’m sure I did sleep for some extended periods. Oddly enough, there is a certain safe and calming effect to the blended murmur of quietly beeping machines, ICU nurses at the nursing station, and other middle of the night quiet noise of the hospital. That said, I don’t remember when my family came in to say good morning.

As mentioned, my neck fusion surgery was scheduled for first thing Monday morning, so there was quite literally nothing to do but wait until the time of the procedure arrived. It was the longest two days (and change) of my life.

The ICU was buried somewhere in the corner of the first floor of the hospital behind a door that said “Authorized Personnel Only.” My room wasn’t too far in from that door because every time that anyone came in or went out I would hear it click and wind open. The room I was in didn’t have any windows or natural light. Moreover, the lights were left pretty low because a handful of my IV meds were sensitive to light so they purposely kept the whole room pretty dark. It felt like a tomb.

Because I was stuck flat on my back in traction my only view was the ceiling, save for whatever I could see with my peripheral vision. And with the side frames of the bed in the upright position at all times that peripheral viewpoint was minimal. I don’t think that there was a TV in my room, and even if there was it was pointless to have it on because I couldn’t see the screen anyway. Anybody who talked to me had to lean over the bed and look straight down at my face.

I couldn’t see the clock either, and that combined with the darkened room meant that I never had a true sense of what time a day it was unless I asked someone. There were no mealtimes to gauge the time of day either, both because eating on my back made me highly susceptible to choking and surgery usually requires a patient to have not eaten a meal for the better part of a day prior the procedure. Instead I got my nourishment via IV meds that were akin to super badass Gatorade. So most of my time consisted of staring at the ceiling or trying to sleep. It was a frustratingly awful solitary existence.

My only entertainment was when someone was in the room with me, but because it was an ICU nobody other than medical personnel could stay in my room for very long in case it disrupted the other patients. Regardless, I found myself salivating for constant, prolonged interaction with my parents whose presence was a major calming influence and reality check during the initial hours of adjustment to ICU life. I was trying to be tough and not needy so I tried to send the nurses for them as little as possible. But every time they entered my room it lifted my spirits immensely.

Along those same lines the most stand out thing about that Saturday was that my parents were able to let a few visitors come back to see me. But it could only be one or two at a time and they had to be family or very close friends. Obviously, family got a priority pass to come back but my parents had to be more of a gatekeeper when it came to my friends. Between the friends that returned from the night before in hopes of getting a chance to see me and word about my accident getting out the waiting room was overflowing with prospective visitors. I don’t recall them coming in to tell me that so and so friend was here and wanted to see me, so which friends were allowed to come back was essentially at my parent’s discretion. In essence, my parents cherry picked from which friends they knew the most or were most familiar with, not truly aware of which friends I considered the closest at the time. Unfortunately, that caused some hurt feelings. For example, my childhood best friend Brad—who I had grown apart from through middle and high school, but we reconnected when I was in college and are very close again—my mom brought back to see me immediately. I guess my mom saw him come in and was like, “Shawn would want to see you.” Meanwhile, a different friend Brad—who I was much closer friends with at the time—wasn’t brought back. Hopefully, all of those friends who didn’t make the cut understood, given the circumstances.

Of course, I was out of it for the better part of that day due to a combination of my body recovering from trauma, medication, and cabin fever so I can’t really remember which specific friends or family came back. But as the days, weeks, months, and years went by a variety of friends would ask if either I remember that they visited me or if my parents told me that they had tried to visit me. There were too many people so in most cases it was no on both accounts. Even if I didn’t have a big say over who visited me, or knew who was out in the waiting room, or couldn’t visit with people for very long, it was nice knowing that so many cared and reached out to me and my family. Very touching.

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While Saturday was a mostly forgettable cycle of sleep, staring at the ceiling, nurse duties, check ins by my parents, and brief chats with visitors, the Saturday night to Monday morning stretch was the worst. By the time Sunday rolled around I didn’t know if I had slept two minutes or two hours. I had no idea whether it was AM or PM. At one point I had myself thoroughly convinced that it was 6 AM Monday morning and I was finally in the homestretch to my surgery time. When I asked what time it was and was told it was only 6 PM Sunday night I completely lost my shit. In the blink of an eye time went backwards by 12 more hours. My patience had worn thin and I couldn’t take waiting anymore.

Being a total movie buff the best analogy that I can come up with for how my psyche devolved over those two days is the sequence from “Apocalypse Now” where Martin Sheen’s character Captain Willard is asked to stay in his hotel room and wait for his orders, which ultimately would take him into the heart of darkness to kill rogue Colonel Kurtz, played iconically by Marlon Brando. The wait for said orders takes a lot longer than expected to receive and as the days go by Willard starts going crazier and crazier cooped up in his room. He starts drinking, doing drugs, practicing karate moves, stripping his clothes off, tearing his room apart, etc. You set that to the music of “One” by Metallica, a song and music video that were based off of the novel Johnny Got His Gun by Dalton Trumbo. The novel tells the tale of a soldier who loses his limbs, eyes, ears, and mouth after getting hit by an artillery shell, but his mind still works perfectly. Thus he ends up stuck in a hospital trapped in a lifeless body. Very apropos of my situation. Whether I would have stripped naked, cranked metal, and trashed my room if I was physically capable of it at the time history will never know.

Once Monday morning finally rolled around I was both relieved and excited, which is strange to say about going into any major surgery, but I just wanted out of my current state and onto the next phase. However, my surgery got pushed from early in the morning until noon, thereby making an unbearably long wait even longer. But as disappointed as I was it was just a few more hours in the big picture. I could finally see the light at the end of the tunnel.

The surgery itself was going to be fairly extensive, as you could imagine. I broke my neck with such force that I shattered vertebrae at three cervical levels, from c-5 to c-7. I basically left a mini-cluster fuck of bone shrapnel inside my spinal column. As a result, people would often refer to my c-7 SCI as a “burst c-7,” a label that I never liked for some reason. Anyway, the surgical plan was basically two-fold with an option for a third. First, the doctor would go in through the back of my neck and remove all of the broken pieces of bone relieving the contact points on my spinal cord.

Secondly, he would replace my shattered vertebrae with one from a cadaver. The prospect of a dead person’s bone being placed in my body was creepy, but the other most common alternative was carving a vertebra shaped bone out of my hip bone and using that instead. The upside of that was that my neck would get fused with a vertebra with my own DNA. But the downside is that it could cause too much undue trauma and increased risk of infection to another part of my body. So the cadaver bone it was. Then when the new vertebra was put in place he would fuse a plate to the two vertebrae above and below the new replacement to hold it into place. At the least I was going to get a plate fused to the back of my spinal column, which was about a three hour procedure. If once they got in there and discovered that the damage to my spinal cord/neck was so extensive and/or it would need more stability then he would fuse a plate onto the front of my spinal column as well. That would also be about a three hour procedure. So obviously the hope was that I would only need one plate. Spoiler alert: I needed plates fused to both the front and back of my spinal column, and therefore was in surgery for six hours. I shudder to think about what my parents and sister went through during those six hours, especially when after three hours they were told that it would be an additional three hours.

Preparation for the surgery was interesting. Of course, they did the regular prep like IV’s, putting the surgical gown on, stuck on vitals monitors, etc. But was interesting, because it was a neurological procedure, was that they also stuck a number of these diode type pads to my head that would monitor my brain activity during the procedure. And when I say stuck I mean they essentially glued them onto my head. After the procedure it would take days and an army of my family members and my then-girlfriend to use alcohol pads to slowly chip that glue out of my hair.

The next step was to meet my anesthesiologist in the pre-op room, who incidentally was my seventh and eighth grade Spanish teacher’s (one of my all-time favorite teachers, in fact) husband. He did his thing and gave me the skinny on how things were going to go in that regard. This was my third major surgery within that same calendar year—two lung collapses procedures in September and June, respectively—so I knew the drill by then.

Once it was FINALLY time to roll me into the operating room it suddenly got very real. Deep down I was confident that it was all routine and going to go according to plan, but any time you get put under for major surgery it also carries that heavy “what if?” feeling that you might not wake up again. One of the hospital Sisters was made available and she led me and family in a quick prayer, which was reassuring. The hardest part, of course, was saying the pre-surgery goodbye to my family. We exchanged I love you’s and they said that they would be right outside in the waiting room the whole time. I tried my hardest not to cry, mostly because I couldn’t wipe my own tears. I also wanted to exude as much braveness as possible so that they wouldn’t worry about me being too scared. When I had one of my lung collapse surgeries I was able to do a look back and see them waving at me as I got wheeled through the OR doors. But I couldn’t do that this time and it added a little extra drama and loneliness to the whole situation.

Once we got inside they positioned my gurney next to the OR table and transferred me over with the sheet underneath me. Then they strapped my arms down, got everything else into position, and started getting the anesthesia meds set up. Out of nervous curiosity I asked what they were doing at every step of the way. I’m sure they couldn’t wait to knock me out.

As far as that went, everyone who’s seen any medical TV drama or movie that involves surgery knows that when they start putting patients under they ask them to start counting backwards from 10 or 100. As I mentioned, this was my third major surgery within a year and just to mess with them/give them something to talk about later I just kept talking instead. My whole premise, which I told them, was that I thought it would be kind of funny that they would know the last thing that I said before I was put out, but I wouldn’t. Even though I was scared out of my mind going into the biggest surgery of my entire life I still managed to rise above the fear and interject a little levity into the situation. That’s just who I am. So what I basically said was, “Instead of counting I think it would be funny if I just kept chattering like a monkey and only you guys would know what my last wor….” And I was out for the next six plus hours.

New EasyStand Blog post: PCA Upheaval

In my new EasyStand Blog post I break down the unprecedented amount of PCA Upheaval that I have succumbed over the past few months.

New EasyStand Blog post: Regaining Lost Eye Contact

In my latest EasyStand Blog post I discuss the reasons why my SCI has caused to stop have good conversational eye contact, and how I hope to regain it. So check out Regaining Lost Eye Contact.

Mr. Dean’s Wild Ride

One of the things that my friends over at Love Like This Life do to give readers a great insight into their married disability lifestyle is that they seem to write a lot of their blog posts in near running diary fashion. Over the years my style has been to write more topically and then layer in insight into my disability lifestyle in that way. But at the beginning of February I had about a two week stretch where all kinds of crazy things happened to me that can only come to light in my SCI lifestyle. So I’m breaking from my usual mode and going diary style to break down Mr. Dean’s wild ride.

It all started on a Sunday that I decided to go into work despite an impending bad snow storm. I was doing a document review project for a downtown Minneapolis law firm and we were on a strict Monday deadline for one portion of the project, so all hands were on deck. Since I was authorized to work unlimited hours (i.e. overtime) for most of the project, given the deadline, and since the duration of the project was winding down I didn’t care if that meant only having one day off in over two weeks because I wanted to soak up as many work hours as I could before the job ended. Plus I wanted to prove that I was willing to go the extra mile as a team player to set myself up for future work there.

Anyway, just getting to the work space was a bit of an adventure on the weekends because the skyways have limited hours that they are open. The parking ramp that I parked in, one of the best deals around at $6.50 a day ($5 on the weekends), was up to six blocks away from the building that I worked in. In general, to get to work I had to roll approximately a mile (by the time you factor in all the twists and turns) through about five buildings and six skyways. One of the buildings is the downtown Macy’s. On Saturdays both the skyways connected to Macy’s and the building I work in don’t open until 10 AM. On Sundays they don’t open until noon. I could work around the 10 AM skyway openings on Saturdays because I never wanted to get to work much earlier than that on the weekend anyway. But on Sundays it caused an issue because I didn’t want to get to work that late. Of the three weekends that I worked that point was moot because I never worked on Sundays anyway. But as I mentioned, I came in on that Sunday as well given the circumstances.

With the skyways being closed until noon, that meant that in order for me to get into my building around 10 like I had hoped I would need to go to the street level at some point during my commute from van to work site. With the Macy’s skyway being closed until noon that meant hitting the streets for three to four blocks, which I wasn’t crazy about under any circumstances in 20-something degree weather, let alone during a snowstorm. The parking lot directly across the street from my work building was $18 per day, an expense that I had incurred a few times and was trying to avoid again to save money given the short term nature of the project. (Spoiler alert: I should have just swallowed the 18 bones and parked there.)

So what I decided to do was park in a ramp that was two blocks down the street. During the week it had an $11 a day deal so I figured I was saving at least $7 that way. But what I forgot was that it was an in by 9 AM deal and I showed up after 9. When I saw that it might cost me up to $14 for the day I was just about to back out until a car pulled in behind me and I was stuck. (As it turns out it was only $4 on the weekends, but more on that later.) As I got out of my van I noticed that there was nobody in the ticket pay booth, which meant having to pay with an automated machine. It wasn’t going to be tough to put my parking ticket or credit card in the machine but it was going to be near impossible to pull my credit card back out again. Therefore, my options were to ask for help from someone in the office or pull up to the machine, drop my ramp, get out to pay, and get back in as soon as I could. And if someone was waiting to pay behind me they could just wait and deal with it. At that point all I could do was shrug my shoulders and deal with it later.

As I rolled down the sidewalk the snow was coming down at a decent clip but the ground clearance was still fine. I had never gotten into my building from the ground floor so that was a new experience. It was highly concerning watching the snow come down like buckets while I worked because it meant that my path back to my van was going to be that much more challenging. When the snow comes down as hard as it was the snow removal priority is always to clear the streets first, then plow/shovel the sidewalks maybe, and more often then not the curb cutouts at crosswalks get forgotten in the mix. It can be almost impossible to bust through snow piled up on crosswalks with a wheelchair. At numerous points during my work shift I thought, “You should just leave now, don’t worry about the extra work.” But at a certain point I figured it didn’t matter how long I was there because it was going to be just as bad taking the sidewalks, if I had to, no matter when I left. In for a penny in for a pound.

The strategy that I was leaning on heavily in parking where I did was that there were skyways that connected my building to the building closest to that parking ramp. I used to work in that building so I was very familiar with the surroundings. As I left work I took the skyways back to my parking ramp as planned. But much to my chagrin the skyway that I needed to get closest to my parking spot was closed. Thus I had no choice but to hit the sidewalks.

The skyway to the building that was kiddie corner to the block my parking ramp was on was open so I went into that building and down to the street level there. That only meant crossing the street twice so that was good news. Most of the sidewalk that led to the first crosswalk was unplowed so it was a little hairy rolling down the sidewalk. In those circumstance the bolt that is attached to the bottom of my chair that locks into the locking mechanism on the floor of my van for safe driving (i.e. the EZ-Lock) can be a disservice because it sticks out like a rudder and can get caught on stuff underneath me. It’s kind of funny to look back when I roll through fresh snow because you see two tire tracks and an extra skinny track in between, like an animal with a tail.

But as I approached the first curb cutout my worst fears were realized: it was clogged up with snow. I could have possibly gone full blast and tried to bust through the pile but the chance of getting stuck with not too many people around to help was too risky. Instead I took a left and went down the sidewalk to the end of the next block to see if I could cross the street more easily there and then double back on the other side. The clearest curb cutout put me right in the street that only buses and utility vehicles can use and I was able to cross the street that way. But once I got on the other side I realized that there were unexpected obstacles on that sidewalk due to construction. So I had to go back the way I came. In doing so I played chicken with a city bus—and won—before I got back up on the sidewalk again.

As I went back down towards the clogged up cub cutout I encountered a guy with a small utility vehicle who was plowing snow in the street. I asked if he could clear the curb cutout for me and he agreed. As I was sitting there waiting I quickly assessed the rest of my path back to my van. Both of the curb cutouts directly across the street from me and then kiddie corner from me across the street from that were even more jacked up, so I figured my best path was to cross the street in front of me, which consisted of one traffic lane and two lightrail tracks, stay on the lightrail track and cross the next street, then just go straight down street like a car to the driveway of my parking ramp. In that kind of snow mess there are no rules!

So once that guy cleared my path I began to execute that plan, but it didn’t go as smoothly as I hoped when I had to wait in the middle of the lightrail track for the traffic light to change, which was disconcerting to say the least. Moreover, the part of the track that I was sitting and waiting on was clear from snow but right in front of me was about four feet of a few inches of built up snow. So if I couldn’t blast through that then I would get stuck on the lightrail track indefinitely. When the light turned green I went full speed, blasted through the snow, hit the street, and didn’t stop my forward momentum until I made it safely to my van.

When I got to the parking ramp I knocked on the office window and the guy inside seemed annoyed by it. When he came to the door I asked him if he could help me pay the machine with my credit card as I pulled out. He very gruffly said the machine didn’t take credit cards and was cash only, and then stood there with this “Is there anything else, you’re annoying me” unhelpful attitude. I didn’t have any cash so suddenly I was in quite the inexplicable quandary. As I got back into my van and looked back at the nightmarish path that I had just taken to get safely where I was the thought of reversing course to go through all that crap again to find an ATM was too inconceivable. I had never felt so vulnerable in my life; it was sobering and awful.

So I called my friend Adam, who lives relatively nearby where I was and who as helped me out in tough spots before, but unfortunately he was just passing Hudson, WI on his way back to the cities from Eau Claire. But he called an MBA classmate/buddy of his, who lived in downtown Minneapolis, to see if he could help me out. Thankfully, his friend was home and came to my location to rescue me. I told him I’d probably need to borrow $20 to pay what I was expecting to be a $14 bill, but as I mentioned I was pleasantly surprised to discover that all I owed was $4. I thanked him, vowed to pay him back via my friend Adam, and felt overwhelmingly relieved to once again be in control of my surroundings in my van. And free from that whole snowy parking ramp mess. When I finally got home all I could do was thank God for my safe arrival.

MEANWHILE, the snow storm was causing issues with my PCA situation for that night as well. My PCA was supposed to be at my place by 5:30 for my evening personal care routine but was going to be late. Normally, she came from North Minneapolis but was at a sister’s birthday party in Edina instead. Complicating matters was that she rode the bus and lightrail to get to me and bus schedules were delayed due to the snow. She was told that the plows were running from north to south, the buses weren’t going to start running where she was until 6-6:30, and that she wouldn’t get to my place until after 8. Given the circumstances I had no choice but to wait.

But then I got a call from her around 7 indicating that things had gotten more complicated. By the time we would get wrapped up she wouldn’t have a way to get home because the buses stopped running at midnight. I reluctantly offered to give her a ride but she didn’t want to put me out like that. So she had called the PCA company to see if they would provide a cab for her to get home. They said that they would call one for her but that it would come out of her paycheck. PCAs are responsible for their own transportation to and from client’s homes, and that’s how it should be, but given the special circumstances of the snow and delays therein I think they should have ponied up for a cab ride home for her. But that wasn’t to be the case that night.

Anyway, that call to the company ended up getting pretty heated. My PCA felt the same way that I did but there was a history of her calling for paid cab rides that were not appropriate under the circumstances so they really dug in their heels because of that. At a certain point my PCA’s mom was on the phone with the office person chewing her out and it just devolved from there. I’m not sure why she hadn’t gotten on the bus at that point so that was frustrating that things were now even further delayed. So next thing I know her mom was on the phone with me venting about what had gone down and vowed to go into the office the next morning and talk to the owner about the cab situation. Ultimately, she was going to just give my PCA a ride here and pick her up again after.

Flash forward another hour and I get a call from my PCA that the roads were really bad in downtown Minneapolis and that not only did her mom just want to turn around and go back home but she wasn’t going to venture back out to pick her up again. So we were back to the issue of how would she get home again. At that point I decided to just scrap the whole thing because it was just getting too late anyway, at almost 9 PM. My evening toilet/shower routine is every other night, and I’ve only gone three days in between a handful of times in over 16 years, so it was a calculated risk as far as that went, but I felt like we really didn’t have a choice at that point. I also told my PCA to chalk this up to stress over bad circumstances due to the weather, to let cooler heads prevail, and to have her mom reconsider going to the office full of piss and vinegar the next day, because the most likely result was my PCA—who was really great—either getting fired or quitting.

The next day at work I get a call from the owner of the company wanting to discuss the previous night’s events. They felt that the staff member had been verbally abused during the aforementioned phone call about the cab and just wanted my take in general to be sure that I wasn’t being similarly mistreated. I said it wasn’t the case and that the previous night should be chalked up to stress from inexplicable circumstances due to the weather. Regardless, she said that due to the previous night’s exchange and other issues I won’t mention that they were going to put my PCA on suspension for three months. About 20 minutes later I got another call saying that the call with my PCA did not go over well, things got heated again, and that my PCA quit on the spot. It wasn’t unexpected but unfortunate for me because I was losing a great PCA, who was really good at what I needed help with, and we had lots of fun to boot.

Meanwhile, she was supposed to be coming by that night to help me out with my evening routine. So on short notice they sent a fill-in who had no experience with the most invasive part of that routine, so that was frustrating. The PCA that quit was also coming in every morning so all of a sudden my very stable PCA situation was completely in flux.

In the short term, they were going to send a fill-in the next morning, a girl who had been in on a weekend and was maybe going to be my new every other weekend PCA. After her first weekend I wasn’t sure if she was going to work out because her common sense was for crap. For example, it took her 10 minutes just to figure out how to open the lock box that my apartment key is hidden in so that PCAs could get in, with me telling her how to do it step by step even. You punch in a four digit code and open the faceplate to reveal the hidden key—not exactly rocket science. But a lot of PCAs struggle on their first weekend so I decided to give her one more weekend before deciding to let her go.

Anyway, at 6:13 AM the next morning she calls me to say she was on her way—she was already 13 minutes late by then. At 6:24 she called again to say that her car stopped, was waiting for a ride, but was on the way as soon as could. Then I fell asleep until 7:20. Called her twice with no answer. I called the company to try her, but to no avail, and they sent an on-call fill-in. By the time the backup fill-in got to my place I would normally be leaving for work, so I was an hour late. Neither I or the company heard from the other PCA about what happened. So I told them I’m done with her.

The fill-in that came that Monday night came again on Wednesday and Friday nights. I liked her and wanted to hire her. But she had another client every Sunday and Thursday night, and with me doing my routine every other night—and changing that schedule up every now and again—it wasn’t going to work out.

The fill-in that came those Wednesday, Thursday, and Friday mornings, as well as the weekend mornings, has since become my permanent Monday-Friday morning PCA. The fill-in that they sent that Sunday night has since been coming in almost every other evening since. Apparently, she’s only scheduled to come in through March 17, which I think is part of a trial period, so I don’t know what is going after that. But she is good at her job and I hope that things continue on. So after a week of total PCA craziness—being forced to work with new people is frustrating for me—it was nice to finally get back to a point of PCA stability again.

On the Friday of the week that my PCA quit I was informed that my document review project was ending. My cap of 48 work hours was up by 2 that afternoon so I sent my supervisor and FYI email about that. About an hour later she scheduled a meeting with the team and broke the news. It was both surprising but not entirely unexpected. About a week and half before that we were informed that as the next phase of the project began the team was getting reduced from 16 to 8, and I made the cut. So as much as I hoped, and was even given the impression that the project would continue for a few more weeks after we passed that Monday document production deadline, I felt like I was on gravy time. I’m told that I did good work, so I should be on the short list for upcoming projects.

All that being said, it was quite the wild ride.

New EasyStand Blog post: The Hidden Responsibilities of the SCI Lifestyle

In my new EasyStand Blog post I discuss some of the Hidden Responsibilities of the SCI Lifestyle.

One Man's Annoying / Aggravating / Funny / Interesting Access Picture

I started a new job on a document review project for a downtown Minneapolis law firm about three weeks ago. Parking downtown is always an extra challenge for me for three reasons: 1) most parking lots/ramps have automated ticket dispensing machines, which can be tricky to grab with my limited finger use (I wrap a piece of duct tape around my finger for extra grip), 2) expense, and 3) proximity to where I work—the latter especially noteworthy in Minnesota winter weather. When I mapped the work location out the night before I started the job I was thrilled to see that there was a parking ramp directly across the street, that as an extra added bonus was connected via skyway.

This is a picture of the closest accessible parking space to the elevator that takes you from the parking ramp to the skyway level. It’s one of the most interesting parking spots I’ve ever parked in. What you maybe can’t tell from the picture is that my van’s radio antenna is butted right up to that caution sign and that exhaust vent hangs over the hood of my van, which was a little disconcerting. But I had no choice other than to park that close so the back end of my van didn’t stick out too far in the drive lanes of the ramp. It was a very tight parking ramp.

Regardless, I only parked there on my first day of work because it cost $18 for the day. The ramp is connected to a hotel and they really jack up the price. I’ve since found a parking ramp that is $6.50 a day. But I have to roll approximately a mile through about five buildings and six skyways to get to where I work. It’s an interesting twice a day commute via wheelchair.

New EasyStand Blog post: When the Work Environment is not so Accessible

I’ve got a bit of a work accessibility series going with my EasyStand Blog posts recently, and my third installment is about “When the Work Environment is not so Accessible.”