1.
The EasyStand Blog I guest wrote for on a
monthly basis started over-editing my posts and changing the titles I chose to support
the content. They had a new blog manager who placed extra emphasis on enhancing
their site’s search engine optimization (SEO). Consequently, the posts started
to lose my unique voice and have really cheesy language I was embarrassed to
have my name associated with. So, I bounced. (Incidentally, pour one out for
the EasyStand Blog because around 6-8 years ago it just went dark. All 60 or so
posts I wrote just disappeared, which is why this blog has broken links to
them.)
2.
After nearly six years of weekly posting, I ran
out of ideas for both blogs.
3.
The biggest reason is I finally had long-term,
full-time employment. After graduating from law school in 2007 and 2013 I was
mostly unemployed, except for a few 2-3 month contractor gigs here and there.
Therefore, I had LOTS of free time to become a prolific long-form writing
blogger on two different sites. But not after 2014. It became a chore.
·
Started working full-time at U.S. Bank; first in
anti-money laundering investigations, and then currently in financial crimes
compliance.
·
Took lots longer to get over a heartbreak than I
expected.
·
Have had a handful of relationships from which I
learned a lot of lessons.
·
Gotten far too experienced with online/app
dating than I ever intended.
·
Moved apartments.
·
Went from being an uncle of just one nephew and
one niece, to one nephew and three nieces.
·
My nephew and oldest niece have both graduated
from high school.
·
Wrote a children’s book that is still in
development.
·
Bought a new wheelchair accessible van.
·
Have taken three long road trip vacations in
three consecutive years with my mom (as compared to none in the previous 27
years).
·
My dad passed away five years ago.
·
Gave up my Badgers football season tickets I’ve
had since 1998 (too much travel/wear and tear).
Ok so why am I suddenly back? Well, that question has a quite the answer: today is July 12, 2026, which is the 30th anniversary of my paralyzing diving accident. Or as it’s been echoing through my head lately – 30 YEARS?! Holy shit that’s a huge number.
Over the years I would take to Facebook, Instagram, etc. on July 12 and do an annual post making mention of it. Putting reminder vibes out there, I guess. An annual cathartic coping mechanism. But somewhere in the “20’s” that stopped. Twenty was a huge one because it’s two decades old. At 21 I quipped that my SCI could legally drink. Year 25 was another big deal because it represented a quarter century. A few years ago, I hopped on the “how it started; how it’s going” trend. But ultimately, I felt like there was only so many ways I could say, “On this day X years ago my life changed forever…” I started focusing my energy into doing “me days” instead. Typically, it consisted of sleeping in a bit (if possible); having biscuits and gravy for breakfast (my fave); visiting my favorite breweries; watching favorite movies; and more recently having a quality cigar. Stuff like that. Usually a solo mission commemoration, but included family or close friends as well if the stars aligned.
But 30 years is a pretty big fucking deal. Easily the biggest milestone in my lifetime. The closer I’ve gotten to this date, the more I decided I’ve got a lot to say about it. As I reflect on such a huge chunk of my life, I break it down as a series of victories and challenges. So let’s get into it.
Victories
Living and thriving: The first call out it is to
just say that I’ve thrived this long. Well. When I was mostly stuck in bed back
in the late summer of 1996 during rehab at Sacred Heart Hospital (SH) in Eau
Claire, WI, just moving around in my wheelchair, feeding myself, etc. took so
much effort. On day early on at SH I wanted to watch a movie in my room during
free time. I was still in one of those crappy E&J rehab wheelchairs with a
chest belt strapped on tight to protect me from falling out. The mere action of
reaching to my left with both arms so I could put a VHS tape in the VCR made me
feel so uncomfortable I gave up after a few tries. Fast forward to two falls
ago and I drove to Madison, WI and back again by myself. I didn’t have anyone
to go with, but didn’t want to miss the game. Talk about a drastic change.
Self-advocacy and self-reliance: All these years later I’m ashamed to admit that in my high school and college days I leaned too hard on my parents to do stuff for me. My mom was the one picking up my monthly medical supplies and grocery shopping. My dad was the one making certain calls on my behalf. But once I moved to the Twin Cities for law school in 2003 that script flipped. I had to facilitate supplies, groceries, how to get gas, and a whole variety of other stuff to get by. Granted, a bulk of that has more to do with growing up and living on your own, but it felt like a bigger deal with my situation. Just last week I shooed away yet another attempt by my medical insurance company to set up a care coordinator. If I can handle my own stuff effectively, then why have someone else do it?
My health: The biggest factor about this is that I’ve been lucky. I’m sure my family will read this like, “Lucky my ass, you’ve broken both your feet, broke your right leg, been hospitalized multiple times with chronic cellulitis, etc.” And that’s all true and fair. But a) most of those things were anomalies and b) the reality of living with an SCI is you’re automatically categorized as having “complex medical needs.” That said, I’ve never had pressure sores (post-rehab), chronic swelling of the lower limbs, bladder issues due to indwelling catheter, minimal amounts of UTIs, no blood pressure issues, or any of the litany of the possible health issues associated with SCI. Quite the opposite, actually. A urologist once told my kidneys were so beautiful they could be in a medical textbook. Most of my doctor visits are related to routine, yearly checkups. More often than not over the past ten years or so, I only visit the doctor because their office says they are not scheduling another refill of my prescriptions (i.e. hold my prescriptions hostage) until I go visit. So like I said, I feel very lucky with my health.
Education and Career: At the onset I mentioned how I’ve been taking road trip vacations with my mom each of the past three years. This year’s was the most ambitious yet because we went to Denver, and it meant one full day of driving coupled with an additional half day. In reality, it was my second choice of location this year, but ultimately felt very fitting and full circle visiting the city where my most intense rehab occurred. (Side note: I was lucky enough to have dinner with my best friend from rehab, Trent, along the way.)
Craig Hospital (Craig) where I did advanced SCI rehab from September to November of 1996, was our second stop in town after lunch. I naively thought we could just show up and look around. But after some initial pushback, and verification I was a graduate, two very friendly ladies from the Craig Foundation greeted us. It was 2:45 one of them only had until 3:30 before leaving for the day. But that as perfect because all I really wanted was a quick walk through of the ol’ stomping grounds. There had been lots of changes but the spirit was still there.
At one point during our tour, I was asked if I went on to finish my schooling. It felt pretty righteous to humble brag that yes, I finished my senior year of high school, then college, then law school, and I’m a non-practicing licensed attorney. It’s clear that was not what she was expecting to hear, and it turns out I’m one of their success stories.
That said, it took lots of guts, patience, hard work, overcoming physical and self-consciousness challenges, etc. to complete all of those levels of education. The job search took on extra challenges as well. During college the bar for how much income you could earn without losing your benefits was so low it created a disincentive to try to work. So I had no employment experience. My morning personal care routine used to go until mi-morning, so working a standard 9-5 shift wasn’t possible. The 2008 economic recession made job searching for brand new attorney jobs extra hard. Ultimately, I changed my personal schedule to do stuff at night instead, so it opened up a whole work day. At the same time, I kept chipping at the edges updated my resume, job searching, and getting more and more contactor jobs. Then I basically back doored my way into the banking industry. My job is stable, I’m great at it, and my company has great benefits that cover most of my needs.
Relationships: I’ve felt lucky that I’ve had five or so serious post-SCI relationships since 1996. All sweet, lovely people I fell in love with, felt like the highlight of our day was spending time together, and made me feel attractive. That’s what it’s all about. Additionally, a common thread was they were all essentially on board with everything extra I bring to the table for as long as we were together. And that’s huge. But unfortunately, fun, loving, and mutually rewarding relationships end having nothing to do with the SCI factor; in fact, only one of those breakups cited the inability to do “normal things together.” That said, see the Challenges section for the other side of this coin: starting new ones.
Intimacy: This goes hand in hand with relationships, but I’m putting separately for emphasis. When you have an SCI at the age of 17 during peak male horny times, how intimacy-related things were going to progress moving forward felt like the great wide open, not to mention scary. I say scary because when I was in my final three-week transition period before I graduated from Craig, they started putting me in these training sessions that covered topics such as airplane travel tips, preventing bed sores, maintaining body integrity, and intimacy. Honestly, the only one of those trainings I’ll never forget is the one about intimacy. I wrote this post years ago that dished all the dirt, so I won’t rehash here (go about halfway down to get to it), but the short version is it was an eye-popping education. I was in the same room with an interesting mix of people, and as a group we watched a video that was basically a porn video with various people with disabilities. When the video was over the boys and girls retreated to different rooms to cover the basics about how to get busy with your partner. Holy shit the whole thing was rough. And let’s just say my biggest takeaway was I REALLY stuff would go down as naturally as possible. But it exhibited the new reality that getting it on with my lady wasn’t always going to be so simple.
That said, I’ve had enough trial-and-error experience to both exude some sexiness and have confidence regarding how things are going to work. I can essentially say to my girl, “Ok A, B, and C are probably going to happen. Hopefully, D does as well. Hopefully, E doesn’t. And maybe F will as well, if we’re lucky.” When there is already so much self-consciousness involved in this space, it’s been a huge win knowing what the gameplan is going to be in the vast majority of cases. (Hopefully, my mom, sister, and nieces appreciate the coded language used here. 😊)
Equipment and adaptability: I consider myself very lucky from an equipment standpoint. My first power chair was so solid that I used it up to ten extra years that I needed to. I figured if it ain’t broke, don’t fix it. But I learned that replacement chairs get covered by insurance every five years. My first power chair only had one issue, but it was major: the drivetrain broke. I got home from law school one night and became a paper weight in my living room. It took a very long two weeks to get fixed (I used a rental), but it was back and better than ever.
I got my second power chair in 2007, but ultimately grew to hate it. I best describe it as a Lazy Boy on wheels. Too much chair compared to my other smaller, quicker ride. So I still used my OG chair most of the time. But the other two new chairs I’ve gotten since then are great, and I’m on the verge of getting a third straight version of it in a row. Solid, quick, maneuverable rides.
Everything else has been very durable as well. I’m still using the same sliding board they gave me at Craig to get in and out of bed. I still use the same adapted writing tool that clips onto my hand. All three of my vans have generally speaking been solid, despite all the litany things that could go wrong any time I drive them. Of course, when those things go wrong, they really go wrong, like stranded for long periods of time wrong. But that has hardly happened to me. You should read about the crazy story that happened to my friend though.
Regarding my vans, they're expensive. My new one, my third, pictured below is $90,000. I don't mention that as a humble brag. It's ridiculous. Why that much? The van itself was the standard $40,00 or so. The cost to convert a regular van by gutting the floor, taking out the middle bench seats, and put in the ramp was $45,000 (that same conversion cost $21,000 for my second van in 2010). Throw in between $5,000 - $10,000 for some of my special driving equipment, and boom a 90k ride. I love it, but buying a car that expensive that isn't a luxury vehicle is crazy work. (FYI those beer cans in the pic are because it's my Badgers football tailgate spot at a college kids house.)
My adaptability generally has been pretty on point as well. What I mean by this is when faced with situations ranging anywhere from dropping something on the floor, to opening doors, adjusting to a new chair or van, using a new cell phone, etc. I might get frustrated by how the new change throws a challenging curveball into my life, but ultimately, I always find a way to figure out how to adapt and find success with it. And it’s been something I take great pride in.
Losing self-consciousness: Being a teenager is rough. So much wasted emotions on worrying what others think about you. I’ve always said that my junior year in high school is one of the most fun years or my life; for sure my favorite pre-SCI era. The biggest reason is from the moment that school year jumped off, I stopped caring what others though about me, and it was very freeing. Suddenly, an SCI left me looking unlike anybody else amongst my peers, and a bunch of that self-consciousness I shed returned. Shortly after I returned back to high school after rehab, as school let out, I said hi to someone I shared multiple classes with for three years as school let out. It was pretty clear she saw me was acting like she was looking for someone instead. Instead of letting it roll right off, it knocked me off my game.
From that point on for a bunch of years I tried my best to not be seen. Choosing the color black for my first two power wheelchairs was in large part because it’s a color that won’t be noticed much. There were multiple times in college where if I arrived at class too late, I would just go home instead of sustaining the embarrassment of bursting through the closed door and forcing people to move out of my way as I settled in.
Somewhere during my law school era the shroud started coming down, though. I was paying too much in tuition, so there was no such thing as being too embarrassed to make a late to class ruckus. (Movie quote: Can you describe the ruckus, sir?) Somewhere along my journey I heard an old veteran of SCI mention how in his early days he worried too much about what people thought of him and his chair, but years later he just thought something was on his shirt if people looked at him weird I started having those “Is something on my shirt?” moments in my late 30’s.
Learning about my body: Picture me having lunch in November 1996 in the cafeteria at Craig. Calzone day. Two gnarly veterans of SCI seated to my right are talking shop about how they do their bowel programs. One dude says he’s Catholic, so he does a thing with a stick I’ll just leave to your imagination five times in each direction whilst doing the corresponding amount of Hail Mary’s. I forget what the other guy said he does, because at this point I’m all, “WTF bros, I’m just trying to enjoy my calzone!” Shortly thereafter one of them turns to me and says, “Don’t worry man, you’ll learn about your body eventually.” Cut to my law school era and one of my PCAs left my legs off kilter while helping me get dressed in bed. So I basically flicked my hips and the leg straightened, because by then I knew I could get my legs straight that way. Those dudes were right. Obviously, I’m not in control of most of the things my body does, but somewhere along the way me and my body just became sympatico with a bunch of stuff I can.
Increased perspective: Just to hit on this one quick, when I’ve gone through everything I’ve gone through within this lifestyle, I’ve acquired increased or enhanced perspective. It can be rough on a frequent basis, but it can always be worse.
Backups: I have backups for stuff everywhere. Backups for my backups even. It’s a combination of Boy Scout motto “always be prepared” and learned hypervigilance. When you could get stranded in bed, in the van, out in public, etc. you learn to stay prepared in case things might go south. In the side pouch (aka my murse) of my wheelchair alone I have a day’s worth of medication, a phone charge cord, van key fob, and cloth to clean my glasses. My bedroom, chair, van, office desk, etc. are all prepared for anything.
The MNSCIA: In June of 2008 I was not having success job searching for lawyer jobs in the biggest recession since the Great Depression. A good friend casually mentioned how it was her dream to reboot the Minnesota chapter of the National Spinal Cord Injury Association. Say less, amiga. So I set off to start a nonprofit org from scratch. I treated it like a summer project. Over the next two years, me and my two co-founders would meet for dinner every few months at the Olive Garden to plot and scheme; we still affectionately call these our first “board meetings.” By 2010 the Minnesota Spinal Cord Injury Association was a fully incorporated and functioning 501c3 nonprofit organization. Our mission is, in short, to fill gaps in resources for people affected by SCI. A major genesis of that mission is that when I returned from rehab me and my family were suddenly on our own trying to figure out my medical care, medical supplies, medical equipment, etc. This year the MNSCIA turns 16 and we’re available to help people like me in 1996, who are new to the SCI world and have issues. We have an “ask the expert” prompt on our website for answers to any type of questions people have; co-host a monthly peer support “hang out;” and have a whole arsenal of adaptive events such as kayaking, biking, archery, fishing, ice fishing, bowling, etc. Me and all of my board members (past and present) are good friends and work well together. It’s been very rewarding helping out our community.
Challenges
All that said, this lifestyle is hard. Like, really
fucking hard. I make it look easy most of the time because I’m strong, independent,
carry a positive attitude, look put together, have a power wheelchair, drive a
van, utilize my humor in all phases of life, can communicate well, calm and go
with the flow, etc. All these things contribute to my ability to survive and
thrive. But the reality is that there is never a day where I’m truly the king
of my castle, courtesy of lots of interrelated stuff always lurking under the
surface.
Access: Or lack thereof, actually. As a wheelchair user I live in a world that is largely inaccessible to me. As someone who used to be able-bodied, it adds extra frustration because I still have that visceral feeling of wanting to just take that one step up into somewhere that’s impossible to do on my own in the chair. To this day, every time I’m driving around looking at houses and such my brain is always equal parts, “Oh that’s a nice house. Too bad I can’t get in the front door.” Or on the flip side, when I drive by a house with a ramp built in I’m like, “Oh hey, check it out!”
This makes finding somewhere to live extra challenging because there is a huge difference between access and accessibility. Think about going to a store that has the blue accessibility sticker on the front window but the doors don’t have automatic openers. It has access but not accessibility. So when I search for new apartments or houses online, checking the box for wheelchair access doesn’t help much because it often just means the wheelchairs can access the unit generally. But I need wide enough space, a roll-in shower, and indoor parking.
It gets to the point where if places are actually accessible it’s a pleasant surprise. And I will cater them often since they’ve gone the extra mile. But the overall point here is that inaccessibility is omnipresent in my life every day, and it sucks.
Muscle Spasms: Quick physiology lesson here – being paralyzed doesn’t mean my legs, etc. don’t work, it’s just that the point of injury blocks the ability for voluntary movement from the brain to the muscle. One of my grandpas used to compare it to an engine that is missing that spark. I can’t tell you how many people have seen my legs shake and think they have witnessed a miracle. But those shakes are just involuntary muscle spasms, and they are one of the most consistent frustrations of my life. For me they mostly trigger due to changes in body position, ranging between sitting up in bed to trunk movement stemming from reaching for something. They range from a few minor tremors that don’t affect what I’m doing, to violent ones that thrash me around in the chair. I’ve often described it as being akin to a rodeo cowboy that just needs to hang on for eight seconds for all the bucking to stop.
I take multiple medications for it. Baclofen is the industry standard, which I take four times per day. But I reached the maximum amount you can take in a 24-hour period like 20 years ago. So I take two other spasm meds I call my gateway drugs to fill in those time gaps. They all combine to still not reduce things to a pleasant level. But I have peers who have REALLY nasty ones, so it could be lots worse. There is a fairly popular option to reduce spasms called the Baclofen pump, but it’s an implantable device the size of a hockey puck that needs surgical placement, and surgical replacement every five years, so I’ve never wanted to go there.
So me and my legs remain an angry old married couple. The daily frustration is that they can invade my life at the worse times. Like if I’m very delicately trying to pick something up or reach for it, my leg spasms will often come of the top rope like, “Not today, bitch!” I can be at work and it’s my turn to talk, but then a spasm might kick in, and between the legs and belly shaking it sounds like I’m having a stroke when I speak. Another fairly common embarrassing occurrence is when I get handed something like a drink, and spasms kick in as I reach, so next thing you know it’s getting spilled. I often consider it a me vs them situation. I can’t tell you how many times over the years I’ve yelled out loud at them like, “WHAT IS YOUR FUCKING PROBLEM TODAY?!”
Diaphragm: My diaphragm is a part of my overall paralysis package. As a consequence, it can be hard to cough, etc. If I really need to cough, I have to build up to it like the Big Bad Wolf getting ready to blow the pigs’ house down. Take in a deep bath then lean forward to bear down. Where it gets extra frustrating us when swallowing stuff goes down the wrong hole. Hell, I’ve had five-minute coughing fits just swallowing saliva wrong. If I’m around people it’s tough because I can’t talk or put up one finger to communicate, “I’m ok just give me a minute.” When I get nagging coughs when I’m lying in bed it might mean sitting up to get enough leverage to blast it out. Not a difficult task, but not easy either. Good times. One of my nieces thinks my “cough face” is funny though, so I have that going for me.
Back pain: for the first 2 years of this roller coaster I had no pain. Of course, the obvious joke is “that I know of.” But ever since I switched to my current wheelchair five years ago, I’ve had this increasing throbbing group of enflamed muscles in and around my right shoulder blade. The only difference between this chair and my previous one is the seat cushion is 19 inches wide and 18 inches deep, whereas the previous one was 18x18. But it doesn’t make sense why that one inch difference from side to side would be the culprit. I’ve gone to physical therapy a few times and all that related stuff but nothing has helped yet. I have a referral to a back specialist, but I’m guessing that could be a shit show. They might ask “where does it hurt?,” and I’ll say “around here, think” because the area that has enflamed muscles is below my level of feeling. This is why my best friend thinks that a quad that’s paralyzed from the mid-chest down having back pain is hilarious. The only thing that has actually helped are CBD gummies, but I can only take those at night at home.
.HEIC)
Potty Stuff: The long and short of this topic is I don’t have control of my #1 and #2 body functions. I have an indwelling catheter for #1, and the challenge there is it can get plugged triggering something called autonomic dysreflexia. Essentially, it causes my blood pressure to rise, skin to get red and clammy, and my body feels like a pressure cooker until whatever is blocking things gets released. I deal with some variation of this multiple times per week. The irony is that every time I experience an unclogging pressure release, the first thing I want to do is chug a bunch of cold water. So it kinda creates that Spider-Man pointing at each other meme. How I go tinkle also requires wheelchair accessible bathrooms, which you can’t find everywhere. So I’ve had plenty of adventures needing to either “hold it” or get creative taking a leak.
Taking care of #2 is much more frustrating because I can’t do it on my own. Consequently, it requires a regimented assisted routine. In a typical week for me it goes down 3-4 times and the whole routine from the start to getting dressed after the shower at the finish takes up to three hours. At least once per week I find myself thinking, “There has to be an easier way.” But the obvious challenges here are that it cuts into my free time, it’s awkward, there are only so many people qualified to assist me with it, and there is no skipping or avoiding it.
Body temp regulation: I often equate my body’s temp regulation to being that of a cold-blooded animal – my temp rises and falls depending on the surrounding temperature. If it’s hot out I can be susceptible to over-heating, and when it’s bitter cold I can’t feel it in my lower extremities. So I just need to be careful, prepared with water or layers, and recognize where the limitations are. If I get too hot, I need about a half hour of cold water and cool fanning to bring me back to normal. But when my lower body gets too cold, like being outside for six hours in November at a football games, it takes hours of sitting in heat with extra layers to get back to normal.
PCAs: So when I introduced the section as having challenges with things outside my control, this is near the top of that list. I require help every morning with personal cares like getting my lower body dressed in bed, etc. I’ve always used personal care attendants for that assistance. And from my perspective they do God’s work for not the greatest pay. I’ll never be more appreciative for their help than in January, when there’s a nasty blizzard outside, my street isn’t plowed, but I still need them to come over. And for the record, I've had a lot that are really great.
But as the adage goes, good help is hard to find. Once upon a time when they were a dime a dozen, I could move on from my staff for any variety of reasons. But in the current climate, recruiting and hiring for what they get paid has become much more difficult. So when the crop of workers is so low, it makes it harder to move on from them because there is no immediate backfill. Consequently, there is far less consistency getting all the help I need.
My most recent frustration is getting folks to show up on time. I’m not talking about occasional weather or traffic delays here and there I give leniency to. I mean people that consistently arrive up to an hour after the shift starts. Just the other day I had this exchange with someone:
“Well at least I’ve been showing up on time.”
“Not really, you average getting here at 6:55.”
“Yeah, but I’m getting here between 6:30 and 7 like you
told me.”
“I’ve never told anyone that arriving up to 30 minutes
late is ok.”
“I dunno that’s what I heard.”
“Not from me. I’ve never ever said that to any PCA
before. Why would I? The start time is for a reason because I have shit to get
to.”
“Well, that’s what I was told by [another PCA] and the
agency. Arriving between 6:30 and 7 is ok.”
Then she pouted for the next hour before the shift ended. But before she left, I mentioned that I have Monday off from work, and if it worked for her, I’d like to get up later than usual. She replied that she couldn’t because she needed to get to her group home job by 8. So if you’re following along: getting to her PCA job a half hour late is ok, but getting to her other job late is not. I recently called another person out for being nearly an hour late three Saturdays in a row. Part of my text reply was, “WTF this is the third straight time.” When she arrived she accused me of being rude to her. Being super late was ok, but being called out for it was rude. You can’t make it up.
But hey, at least they are showing up, because a few years ago I went through a situation where one of my PCAs no showed on a regular basis. It resulted in dozens of hours of my life getting wasted. In an extreme scenario like a blizzard where nobody can come, I can get partially dressed and in my chair. But it’s still pretty hard. And if I screw up my transfer and nobody is there to catch me, I’m just on the floor indefinitely. So I avoid it as long as I can.
Relationships/meeting new women: Like I detailed above, I’ve had some very good relationships. But the reality is that over the past 30 years, I’ve been single for 20 of them. As someone who loves to be in love, have that hot best friend I’m smitten with, do fun things, share life with, and honestly, let’s me grab their ass to my heart’s content, being alone for so long really fucking sucks.
Starting new relationships with women that exhibit the combo platter off mutual attraction and shared interests along with an open-minded attitude about my whole kit and kaboodle has been a challenge. There are a few instances in my past where we were both aligned with everything, but they had lingering doubts they could “take care of me” so nothing blossomed.
My preference is to meet women out and about where my humor and charm can be disarming. I’ve had many people tell me that shortly after we start hanging out the chair kind of disappears. I once wrote that my ideal scenario to meet a woman while getting my hair cut because it creates a captive audience for a half hour. Then the crazy thing is within a few months of posting that, I actually met someone one of the great loves of my life that way. We were together for almost a year. But not every cute hairstylist is single and looking.
Therefore, the reality of someone with a busy lifestyle who works 40 hours per week, has PCAs helping out after work three nights a week for up to three hours a pop, etc. online/app dating has become the most likely way to meet people. Consequently, I’ve gotten lots better at internet dating over the past 15 years, even though that’s not a feather in my cap I want. The evolution has essentially been this:
·
On my very first dating profile went way too
deep about the details of my disability. I legit described how I have partial
function in my arms and can’t move my fingers. Like good Lord, why? I met the
aforementioned hair stylist shortly after that, so that profile got put on ice very
quickly.
·
The next time I delved into internet dating I
merely said I use a wheelchair and made a joke about how it just means I get
good parking. There was a stretch where I said I was part of the Avengers too. But
a quip about having good parking and concert seats has been constant for years
now.
·
For the longest time I put the wheelchair
disclosure at the bottom of the profile. My strategy was lay my humor and charm
on real thick while describing the facts about me that actually matter, so when
the wheelchair disclosure appears it might become less of a big deal now that
they’ve gotten to know me first. But there were way too many instances where it
got missed, then after some back and forth messaging when it came up, the match
would just disappear. Homer backing into the bushes GIF. Was it a compliment to
get interest from women based a decent amount on my looks? Yes. But does it
hurt my feelings when they nope out? Also, yes.
·
During my current era I decided to put the
disclosure right up at the top, like “Just so you know, this is a thing.
Hopefully, you read on anyway; if not, I get it, good luck.” Therefore, if
matches still miss it, they have shitty reading comprehension and
they’re not my type anyway. Unfortunately, the results are that the level of
interest has dropped off considerably, so living with that rejection sucks. But
I try to stay positive and not give up.
Sometimes I feel like I’ve swiped left and right on all the single women in the Minneapolis metro. Twice. But I’ll keep trying because the right one for me has to still be out there somewhere.
Working out and losing weight: At the time of my SCI, I was working out twice per day. I’d hit the gym at my high school to lift weights in the morning. At night I had a routine of push-ups, pull-ups, crunches, and utilized a weight bar. All these years later, I still haven’t come close to replicating those daily routines my body begs for. I have a weekly weight lifting workout session with a wonderful physical therapist who helps me out. I’ve been seeing her for nearly 20 years on a weekly basis. I jokingly call her my spotter which I find funny because she is over-qualified to just be a spotter. Anyway, with her assistance I can utilize wheelchair accessible machines that allows to lift the types of heavy weights I can’t anywhere else. That gym also has free weights, battle ropes, hand bikes, etc. as well. Ideally, I’d have that same heavy weight lifting routine three to four times per week, but I only have a finite amount of time and funds to get there beyond once per week. I have a bunch of stuff to use at home too, but not everything can be worked on solo. The dream scenario is to have some of those badass weight machines in the garage of my own house and leverage my PCAs to help with setup.
By the same token, it’s hard for me to lose weight. The working out I can do outside the gym is limited. Progress is slow. Cheat meals become monthly instead of weekly because fun, greasy food and treats are easy to take down, but take extra-long to work off again. In the weight loss journey I'm on right now I’ve had success losing about 1-2 pounds per week, but I still perpetually battle the vaunted “quad gut.” Most quadriplegics gain potbellies because the abs and related muscles that hold your stomach in aren’t doing their job. So as my body is shedding weight elsewhere, I can look like a body builder from mid-chest up, but still look six months pregnant through the middle. On multiple dating apps I make the joke that I’ve never been married or have kids, but sport some primo dad bod. The body dysmorphia issues can be a daily battle, but at least the dad bod look is in right now with the ladies.
Diabetes: I put my health in the victory category, but something like diabetes being an unfortunate bi-product of the SCI lifestyle sucks. Because as someone with a high level SCI, I live a sedentary lifestyle, despite how active I can be. About six years ago a nurse practitioner started talking to me about diabetes in the present tense, and asked if he could take pictures of my feet for the file. So I was all, “Whoa, whoa, whoa. When did this happen and why?’” It is just because my A1C blood test results started putting me in either the pre-diabetic or diabetic range on a consistent basis. I do have my mother’s Norwegian sweet tooth, but over the past decade I’ve dropped sugary intake significantly because it’s hard for me to lose weight. I eat a lot of fruit instead though, but that also has sugar albeit healthy sugar. So even when I’m trying to be as active as possible, and eat as healthy as I can, my blood tests keep popping in that range. It’s very, very frustrating.
Regrets: “Regrets, I’ve had a few…” as the song goes. We all have them. I try hard not to dwell on them. But as I sit here at 47-year-old single/never married man, with no kids, never owned a home, etc. those regrets can easily get amplified.
In terms of relationships, early on in high school I should’ve told my biggest crush to go out on a date with me instead of a swim team mate of mine. But being that bold takes time learn, at least it did for me. They would go on to date through freshman year of college, so talk about missing my window. I should’ve told my closest female friend I had fallen in love with her. But the fear of ruining the friendship was too much to overcome at the time. I should’ve been more supportive of the girlfriend that switched to a vegan diet half way through our tenure together. But I had a very hard time letting go of the version I loved so much that would text, “I have beer and buns, you get brats and beans, let’s grill (with my dog)!” I should’ve ended a relationship that wasn’t working sooner. But after you have your own heart shattered a few times, it’s hard to be the one that does the shattering. Would any of those changes to my personal wrinkles in time have resulted in me having the wife and family of my dreams? Probably not. But I can’t say for certain either, and therein lays the rub.
Another huge one is if I had moved to Madison for college at the University of Wisconsin. I got accepted. My parents gave me the acceptance packet for an 18th birthday gift when I was out at Craig. But between October 1996 and August 1997, when I would’ve moved down there, my new lifestyle had way too much transition going on. Plus, my parents had almost gone bankrupt adding a huge, new, accessible addition onto our house for me, so it felt very disingenuous had I bounced. But, man, the handful of times I visited my UW college friends and the girls hit on me in ways that never happened at the University of Wisconsin-Eau Claire that I attended, I really wished I had pulled that trigger. Not to mention, all my beloved Badgers sports teams were within walking distance. And my aforementioned high school crush went to school there as well.
Of course, the
mother of all regrets is diving into that goddamn beach 30 years ago today. The
weather was cloudy and cool, which isn’t swimming weather. I had no swim
trunks, but used a pair of shorts instead, so that was another huge sign to not
go in the water. It wasn’t my football that got thrown out into the water, so I
should’ve never volunteered to go get it. But back then I was such a water dog
that you barely had to twist my arm to jump in a body of water. The dive was
routine. I did nothing reckless. It is what it is.
More than not walking: When you can’t walk, I think people assume that’s the worst aspect of the SCI lifestyle. But it’s not. All these years later, I rate the inability to fully use my hands as the worst part. If I had full, or even partial hand function in just one of my two hands the quality of my life would be so much higher because it would open up my ability to do so much more for myself. Not having any hand function makes many things impossible to do, but some function would allow to grab things, cook more, get myself dressed, and so much more stuff like that. I’ve gotten to the point in my life where a cure for SCI merely regains my had function, I’ll be so fucking stoked.
Ok let’s empty the emotional tank about my wonderful family a bit:
Mom: Simply put, my mom is absolutely the best ever. We have lots of home videos because my dad used video cameras to record tons of stuff when I grew up. Somewhere in the basement there is one of me as an infant absolutely losing my mind on the change table getting a diaper pit stop. But despite the chaos I was throwing at her, my mom remained steadfastly loving, cheerful, sweet, encouraging, supportive, etc. In retrospect, it’s just a microcosm of who my mom has been my whole life, especially in the face of the chaos an SCI throws into the mix.
Going back to the days I was still in urgent care, my mom was the one spending the night on a crappy fold-out cot, that ultimately gave her painful sciatica issues. There was a period of time there where I was battling a nasty staph infection in one of my chest tubes. For whatever reason, it flared up at night. I’d get over-heated and very angsty. There were numerous times when I’d wake her up in the middle of the night and just say the craziest gibberish shit like I was speaking in tongues. I’d hear her reply, “I don’t understand you, honey” and the then I’d say something back like, “YOU KNOW BLAH!” then pass out again. That had to be difficult to deal with. I’ve always kind of had a coping mechanism of making lists, so another wild thing I’d do is wake up in a complete haze and say, “Oreo cookies, cherry pie filling, Mountain Dew, Swiss Cake Rolls…” and she’d write it all down, which essentially represented all the treats I was going to have when I could go ham on anything I wanted to eat again. But cherry pie filling? Thirty years later I still don’t know what the hell I was thinking there.
On the personal care front, mom has always needed to chip in, which isn’t the ideal mother-son relationship you want. Initially, it was volunteer labor. For big stretches of high school through college, mom often did triple duty of her day job teaching third grade, her part-time job at Macy’s from early evening until close, then helping me with my stuff. Exhausting times. I know she got frustrated here and there, but has never complained once.
In the era of my life from late college years until now, I became mostly self-sufficient, so the amount of additional help I need has dropped precipitously. Another thing that has helped buffer the mom needing to help me go potty factor of it all, is that for the past nearly 20 years she’s technically been an employee of my various PCA agencies, so when I need help with cares, she’s on the clock. From my perspective, it helps mitigate when I need her help on short notice. And for the record, she’s never said no she cannot help unless she is very unavailable (e.g. out of town watching the grandkids).
But all that stuff has ultimately bred a tighter bond. As I’ve grown into middle adulthood, we’ve become great friends too. She’s great to go on my road trip vacations with because she’s mostly game for anything. And even if she drags her heels for something I want to do and she’s unsure of, in nearly every case she’ll be the first to say, “That was fun.” She’s the most special person I know, her love and support are endless, and I couldn’t love her more. And I’m not the only one. Everyone thinks she’s special. My aunt Sharon once called her a saint. All the grandkids are smitten. In fact, my youngest niece calls grandma her bestie, which is so damn cute. She’s the best!
Sister: My injury couldn’t have come at a worse time for the stage my sister was at in her life. Thirteen years old. The last summer vacation before high school ruined. Daily hospital visits vs time with friends; then after school started, daily hospital visits vs just going home right away. I think we had to have her 14th birthday party at SH. Of the eight weeks I was out at Craig, my parents flew out to visit for 7/8, and it was mostly just them. So my sister got shuffled around for weekend stays with my aunt Sharon, neighbors, and my then girlfriend. Way too much stuff of hers fell through the cracks and got put on the backburner as me and my recovery took center stage. But I saw it all, I clocked it all, I’ll never forget it, and will always feel guilty about it. (Pic below taken on the first day of school 1995. I wore those shorts when I dove into the beach on 7/12 FYI.)
Regarding the transition to high school, tough at any age
to be sure, but about 80% of her middle school classmates went to the rival
high school instead, so I think there was a huge reboot on the friends front. Now
what was supposed to ease that transition was having the Cadillac of big
brother situations: a senior; one of more popular and well-liked guys in the
building; knew all the ins and outs of high school life; could drive her to
school in the morning then home after school; act as a security blanket; check-in
throughout the day; and give her random hugs and embarrass her a little on a
daily basis. I was really looking forward to it.
But she was on her own instead. Sometime that fall my mom or dad mentioned that she was getting picked on by a group of kids at school. Instead of being there to shut that shit down by bodying one of those little fuckers against the lockers, I was crying myself to sleep out at Craig. That still keeps me up at night sometimes.
That said, all these years later the I like to think that the positive that came from it is she became stronger and more independent. By the time she graduated high school she was a captain of the dance team, a state champion, a marketing wiz, and a hot commodity with all the fellas (my brolaw included). Professionally, she became a badass boss bitch a few decades before that was even a term. As GM of multiple internationally recognized business franchises she did some genius stuff to get difficult employees in check, and take her stores to previously unforeseen levels of efficiency and profitability. As a superhero mom of four kids, she never needs a calendar to keep all of the kids’ schedules straight, which is very impressive. She’s found success with a few very creative side businesses as well. I don’t think the kids understand what a G their mom is. She’s sweet, generous, creative, and always a text away. I’m very lucky!
Dad: We lost my dad unexpectedly five years ago
already. He’ll now miss both the 25th and 30th
anniversaries of my SCI. The worst part of my 25th anniversary is
that for such a monumental event for me he wasn’t there to say, “I’m proud of
you, buddy.” He was always very effusive in letting me, my sister, and the grandkids
know how proud of us he is for our various accomplishments. But I KNOW that at
some on that day five years ago, or some point today, whether in person or on
the phone, he would’ve told me how proud of me his and that he loves me.
Why I feel the additional impact of his loss on these big anniversaries is because going back to the summer and fall of 1996, dad was in the pocket from the start. During that summer his department was doing a huge transition from the Commissioner of Banking to the Department of Financial Institutions. He couldn’t take a sabbatical but didn’t want commute to Madison during that difficult time either. So he told the bosses at SH that he needed an office to work remotely from. He didn’t ask, he told them. I woke up lots of mornings in my room to that obnoxious “WEEEEUUNNNGGGHHHH” modem login noise to AOL so he could get online. It was equal parts disrupting and comforting. Similarly, he stayed the first two weeks I was at Craig to ensure a successful transition because I was scared moving so far away from home. My family rented this apartment type unit in a building adjacent to Craig that was built for families to stay nearby loved ones going through rehab.
He spearheaded a lot of other stuff too, both in the early days and through me being out on my own. Stuff like: getting the wheels in motion for home health aides to help me with personal cares in the morning and at night at home; getting my first minivan; setting me up with Social Security SSI payments (my only “income” for nearly 15 years); bring in Vocational Rehab reps to get me set up for college and beyond (quick side note: the voc rehab guy merely asking, “What do you went to do for a career?” set the stage for going to law school because they’d pay for tuition and books until I was “employable”); being the heavy voice when it came to getting the new addition built onto the house; calling people out for lack of accessibility; telling me I should ask out the cute servers at restaurants (actually, he said I should ask them to sit on my lap); and so on. Granted, both my parents co-facilitated most of that stuff, but my dad was often the hammer, and man he LOVED being the hammer.
So like I said, he was a very special man, he’d be the first to say how proud he is for everything we’ve accomplished, and it really sucks I can’t hear in person what I can hear in my head.
Nephew and nieces: I nearly put this in the
challenges section. Don’t get me wrong, my relationship with my nephew and
three nieces is great. That said, no matter how great it is, for as long as it
lasts, I’m perpetually going to be frustrated that it hasn’t been the one I’ve
always deeply wanted. What I mean is I’d give anything to have been able to
show up on visits and run the whole gamut of feedings, wrestling, airplanes,
cuddling in bed for story time, swimming, hide and seek, etc. Just show up,
tell my sister and brolaw, “Go have a nice weekend together. I’ve got this.”
Take the toddlers, bottles, and diaper bag to the park. Happily take care of
shitty diapers. All that stuff I missed out on.
Being an uncle with significant physical limitations sucks. When my nephew was a baby, he crawled up to me, sat up, and put both arms up in that “Ok, pick me up now” move he pulled on everyone. But when I didn’t do it, because I couldn’t, he had this sad and confused look on his face. I quickly said, “Sorry buddy but I can’t do that.” But that doesn’t register with a nine-month-old. Rough. Flash forward to the present. My nephew loves golfing, and I used to be quite the duffer myself, so hitting the links together would rule. All my nieces are into dancing, and doing silly uncle-niece TikTok style dances would be fun too.
But I love them all more deeply than they’ll never know, and I show up for everything: birthdays, t-ball games, soccer games, basketball practice, dance recitals and competitions, graduations, etc. Ultimately, that carries way more value.
Brother-in-law aka Brolaw: Just an honorable mention shoutout to my brolaw, Ryan. He’s been a great addition to the family. Loves my sister in the bottomless way my dad loved my mom. Great dad to the kids. Great cook. Good sense of humor. We have a bunch in common. A good hang. And he has this special talent to get my mom, who rarely drinks, to actually do shots (Fireball) with him every time they see each other; it’s impressive. All that stuff has more value to me than he’ll ever know.
Extended family/good friends that are akin to family:
Another hearty shoutout to my extended family and close circle of friends.
Simply put, all of their love and support has been steady and generous from day
one. I couldn’t be luckier to have such a great support system all these years.
In Conclusion
You know how you can play either the “what if” or time
machine game? As in, if you could go back in time, would you do something
different. So in my case, would I want to transport back to July 12, 1996 and
not dive into the beach. You’d think the obvious answer is yes, right? Avoid all
the bullshit stuff I’ve had to endure for three decades. But my answer might
surprise you. Because here’s the quick list of what could suddenly go away:
·
All the kind rehab people I met
·
Becoming a fan of the Colorado Avalanche
·
Getting closer with my parents living at home
during college
·
Rekindling with my best friend during college in
Eau Claire
·
Becoming good friends with so many people in Eau
Claire, including some I consider brothers
·
My goddaughter
·
My law school experience and law school friends
·
Great people I’ve meet in the Twin Cities
·
A close friendship with a buddy from back home who
lives near me here
·
PCAs that have become good friends
·
4/5 of the relationships I’ve had
·
Building the MNSCIA / becoming an ally to the
disability community
·
My love for the Saint Paul Saints
·
A litany of Twin Cities experiences like all my bellowed
breweries
·
The current version of the relationship I have
with my mom, sister, and brolaw
·
The relationship with my nephew and nieces
All that has contributed to having a vey well-rounded, rich, and mostly happy life. So would I risk most of that stuff going away by changing my past? I wouldn’t. it’s been a tough ride, but all that stuff means way too much to me.
Ok, so what’s next? A short list of what I hope my future still holds:
·
Meet my person. Finally.
·
Marriage and kids.
·
Own a home.
·
Find a higher paying job. Probably in the financial
services industry since I’ve got a good foothold. But if my dream job of movie
producer or script supervisor presents itself, game on.
·
Take more road trip vacations with my mom.
·
Explore more of Minneapolis/Saint Paul. Last
year I put together a list of places I drive past all the time but never stop, so I need to start actually stopping in. And
I’ve probably only hit about 3/5 of the local breweries.
·
Keep on rocking with the MNSCIA.
I have a picture that I often use as my cover photo on Facebook that says, “I’ll try until I can’t.” That sums up my MO. Yes, this has been a challenging 30 years. Yes, a few times per year I think, "This can't actually be my real life." And yes, it there will be many more challenges to overcome in the future. But I’m still an eternal optimist and I refuse to quit.
So thanks for reading. Thanks for all the love and support from everyone I’ve crossed paths with that has contributed positively to this crazy ass journey for 30 years. Here’s to the next 30 years being even more fruitful. Cheers.
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