Chapter 17 – Initial outpatient therapy

When it was time to be discharged from Craig hospital, my sister was out of town, leaving me, my anxiety, and the probable genetic source of that anxiety, my dad, to try to figure things out. We were both trying to put on a calm face and work through everything but were both visibly on edge. It’s not like we were going far, we were literally just going next door to their outpatient housing. The big difference is that you don’t really have the network of doctors, nurses, CNAs, therapists, etc. there to help you, they are right next door, but generally unavailable to help if something happens. It was my first experience dealing with a CNA who was not trained by the hospital and didn’t even necessarily have experience working with quadriplegics; you really have to describe what you want done in fine detail if you want it done a specific way. I hate telling people what to do, especially if it is for my benefit, so trying to instruct a new CNA on everything from the Hoyer lift, to the bowel program, to getting dressed and in the chair was excruciating. It definitely makes you appreciate people who just seem to do everything intuitively in a way that is at least logical. Again, it’s amazing how many people will look at you stunned, “wait, you didn’t want your underwear on sideways with both legs through one hole!?!?”

Keep in mind that you are training a stranger on all of your procedures, needs, preferences, etc. for the first time in an unfamiliar environment with unfamiliar equipment, knowing in two weeks you have to do it again. Also, you have to deal with whoever shows up. A lot of it is them asking how you want something done only to realize you don’t have any clue either, or them doing something you thought there was only one logical way to do something, only to find out that some people operate with a different set of basic logic rules. It kind of feels like asking someone to open a window and they cut the window out of the frame.

One day, my dad was lifting me from the bed to my chair using an electric portable Hoyer lift, it was basically our first time using it. Well, wouldn’t you know, as I was dangling in the air, the lift decided to just stop responding. We had been trained on how to use the equipment, with the important caveat that the equipment did what it was supposed to; we hadn’t been trained on troubleshooting the equipment; in retrospect, it would have been incredibly useful to learn to troubleshoot common issues before they happen unexpectedly. We tried calling the nursing advice line at Craig hospital, an amazing resource available for free to anyone, thinking they might send someone to help; but, because they were not able to help outside the hospital, their advice was to call 911, which was a big no from me. My dad’s anxiety was boiling over, I think he felt personally responsible for things going wrong, and where I would typically step in and try to fix whatever was broken, I had some aptitude for figuring out mechanical systems; now, I couldn’t step in, literally or metaphorically, and I had to try to walk him through what I typically figure out by intuition and feel. At some point I think my instructions were causing more stress and didn’t seem to be helping and I had to bite my tongue and stop backseat diagnosing. He eventually figured out how to bypass the motor and lower me into my chair; he might have done it faster had I shut the fuck up earlier.

Not the exactly lift we used but similar in form.

The whole experience was a bit surreal; I was sleeping in an electric adjustable hospital bed that looked like it was from the 70’s and was basically set up in the kitchen. Waking up to the knives of light streaming through the poorly covered kitchen windows was less than ideal, but I’m pretty sure they didn’t plan on someone sleeping above table height in the kitchen when designing the room. However, it all quickly became… routine? I don’t think it ever felt “normal” but at that time I couldn’t differentiate normal from absurd.

After two weeks in the patient and family housing, it was time to move home. I wouldn’t be moving back to my apartment for a multitude of reasons, most importantly the stairs. My sister had gone around and looked at different apartments and took a load of pictures of everything. After we went over everything and chose a few apartments, we rented an accessible van and drove down to Boulder to see how it was to actually navigate through them. Measurements are great but rarely give the full picture and it’s always a good idea to take a spin through the space in the chair; there is almost always that one corner that makes you think, “huh… I swear I measured that and I SHOULD fit, and yet…” In a fun twist, I ended up moving into a building that my two best friends lived in when I first moved to Boulder. Neither of them lived there anymore, one was across town and the other had moved out of town, but there was a bonus in the familiarity and memories.

The first time I rolled into the apartment with it actually being my apartment, I was hit by a feeling that I hadn’t had in a long time; it was similar to the first time I walked into my first apartment after moving out of my parent’s house, that mix of excitement and nerves that makes your emotional state feel jittery and hard to place. “How do you feel?” “I… I don’t know!?” Moving as a quadriplegic adds a few considerations and steps to the process. For example, obviously, you have to make sure that the new place is wheelchair accessible, but if you are moving a far enough distance, you will probably have to switch which company is taking care of staffing your nursing and CNA visits, which, for an introverted control freak, is a veritable nightmare of meeting new people as soon as you wake up, immediately trusting them with procedures that can have serious medical implications, and knowing that sometimes there aren’t other options. I am neither a morning person nor a people person, so life tossing me a disability that says, “Hey! Here is a lifetime of people as soon as you wake up. Oh, you’ll be waking up at 5am every day now!! Good luck, ass hole!” feels almost earned or deserved.

The first real thought that hit me in the apartment was the sense of the space actually being mine, there weren’t going to be people flowing in and out of my room, and there was finally a small sense of privacy. I was still sleeping on a hospital bed and none of my stuff had been unpacked yet so it wasn’t quite home yet, but unpacking and decorating a new place was always something I loved. The only part that I was not looking forward to was the fact that I basically couldn’t do any of it myself and would basically have to be the foreman “standing” around telling others what to do. This also meant I couldn’t be as anal retentive and make a million micro adjustments to make things “perfect.” As much as people are willing and happy to help, ask them to move the giant shelf 6 mm to the left after 15 other similar instructions and feel them fight to restrain their inner rage; and it’s 100% justified, I’m not sure if we would make great friends if that wasn’t your reaction. Also, keep in mind that they are already doing so much for me so it’s not just the shelf, it’s the shelf and the ocean of other things.

It felt so good to have the freedom to just go out, even with no real goal in mind. I remember going to and rolling around the Target that was near our apartment complex; I’d zip up and down the aisles before cruising out, as if I were casing the place for a heist. Then, as I became more confident venturing further and further from the apartment, I would hop on one of the bike paths that passed close to the apartment and glide down the path at max speed [6.2 ± 0.5 mph depending on the slope]. I got all sorts of reactions from people, but by far my favorites were people who would just smile and say “hi” or the people who would glance back, then do a double take with eyes that looked like someone shoved golf balls into their eye sockets, and would basically dive out of the way, dragging whoever they were next to with them as if a rogue elephant were charging down the bike path; it made me giggle to no end. I would go out and check out parks, follow trails I had never bothered to go down before, and just kinda explore what I could while slowly testing the capabilities and limitations of my power chair.

One of my favorite murals along the path.

That apartment served as the launching point for a lot of my adventures that really helped me develop a sense of independence and confidence when alone. The one big drawback was that the apartment didn’t have a roll-in-shower and I didn’t have my fancy sliding bath chair yet, that makes it easy to get in and out of a bathtub shower. Instead, we had a small collapsible basin that we would roll my chair into; the sides of which were probably 4-5 inches tall. A shower head with a long hose was attached to the actual shower and a water pump with hoses was set up to pump water from the basin to the shower. A curtain was set up around the basin, supported by a PVC frame, to keep the water from spraying or splashing outside the basin. That is how I showered for over a year, getting hosed down in the walk-in closet, which was the only place it would fit; and because someone would have to open the curtain to get inside to actually scrub everything down and wash your hair, there were long periods of time when you are sitting there wet, with the curtain open, and no warm water to counter the inevitable chills. Not going to lie, I felt a bit like a farm animal, but at least it was a workable solution.

One of the positives of being in the ICU for 3 weeks pumped full of drugs is that I didn’t even realize that I hadn’t smoked or drank until I was outside one day at Craig Hospital and smelled the second-hand smoke drifting down from someone’s family member who had stepped out. It’s not too often that something is simultaneously so disgusting yet so appealing; I was caught between a full realization of how disgusting it is to smoke and just going over and asking for one. It was a while later that we were having dinner in a room in the family housing, something that didn’t happen too often, and one of them cracked open a beer and gave me a taste. Before the accident, I had a pretty high tolerance for both weed and alcohol. Hell, most of my physics homework was done while drinking and smoking. It kinda felt like my brain was jumping from idea to idea too fast when I was sober, and as I drank or smoked, I could start to pick out and focus on a single idea. Now, when I say that, some people may think I’m saying I am like the movie portrayal of John Nash decoding soviet messages in A Beautiful Mind, where I have multiple brilliant voices streaming through my brain and I’m trying to grasp onto one… nope, not what I mean. In a reflection of my social insecurities, where I used drugs and alcohol to take that urge to run from social situations down a notch and allowed me to at least pretend to be a normal confident human being, I lacked the confidence in my ideas to actually write them down and begin to work them out.

If I was a bit high or drunk, it felt like my strongest intuition became the loudest voice, enabling me to work faster and more efficiently, less second guessing myself. It wasn’t uncommon to go through a six pack of beer and a few joints while working on my physics homework. That said, when I had that half a beer as my first drink, I was surprised at how much it affected me and how the effects of being tipsy are greatly magnified by the lack of body control; imagine that your ability to stay vertically oriented is integrally linked to the exact position of your head, an inch to the left = falling left, inch to the right = falling right, etc. I imagine it would be like having a 40 lb. weight attached on top of your head while getting drunk; if you are straight up and down, it’s no real problem, but the further off center your head goes, the more inevitable the fall becomes.

I didn’t really think about smoking weed while I was at Craig hospital but as soon as I was discharged, I started to think about getting something in case I wanted to get high at some point. Being in Colorado, it wasn’t exactly going to be difficult to find something; I was mostly trying to figure out how I would manage all the logistics of actually making the purchase such as getting in the building, getting money and ID card out, etc. as well as what exactly I was going to buy. The logistics of trying to smoke also need to be considered. Thankfully, my friend Alex had basically stopped smoking and had a vaporizer pen with a concentrated THC solution. Big bonus, I didn’t have to do anything except inhale through the mouthpiece, no buttons, switches, or lighters necessary. It definitely hit me pretty hard the first few times, but it was one of those familiar lines between too much and Goldilocks. I had almost forgotten how much smoking lifted the blanket of anxiety. Ironically, part of me was anxious about possibly going too far with it; I wasn’t going to die but it doesn’t take much to make a barely operable body inoperable. The one risk that I have found in smoking weed as a quadriplegic is that sometimes you can get hit with a pretty rapid drop in blood pressure a short while after. Other than that, it has been smooth sailing. Colorado is a great place to be for a plethora of reasons, the legality, availability, and variety of THC/ CBD products being among them.

To be fully candid, I’m not entirely sure why I get high; I mean, I obviously enjoy the feelings and sensations, but there are also other benefits like the reduction in anxiety, increased appetite, possible reduction in pain [actual or nerve pain], etc. In regards to the pain, I am still undecided whether or not it actually helps. I know that some of my nerve pain can be better or worse depending on my anxiety; a fun loop of, I’m a little anxious, oh I’m in pain, oh now I’m more anxious, aaand now more pain, and off we go! The fact that getting high reduces my anxiety makes me think it may, therefore, help reduce nerve pain. I should also point out that despite any pain I have been in over the years, I have managed to deal with it all without the use of opioids or other heavy pain killers. Again, correlation does not equal causation, as I recently heard “the per capita cheese consumption directly correlates to the number of people who died by becoming tangled in their bedsheets” [Tyler Vigen] Dear god, stop eating cheese!

Source - https://www.tylervigen.com/spurious-correlations

The question really is, if it did none of those additional things, would I still get high? The short answer is yes, of course. Now does that imply that I’m just trying to justify something that, underneath it all, I still feel a sense of guilt over? Maaaayyyybe? The fact is, I enjoy doing it, I don’t see it negatively impacting my life, and it may or may not have extra benefits beyond my enjoyment. It’s important to note that everyone is going to react differently to THC/CBD so nothing I said here should be taken as gospel.

Going back and finishing school was one of my main goals and motivations while at Craig hospital. It was probably a mix of needing something to focus on and work toward, and really wanting to finish undergrad after multiple attempts, all ending in me putting it off after a year or two for one reason or another. The timing of everything was a little aggressive; I broke my neck 4 days before classes were set to start and I was getting discharged a couple weeks before the next semester started. I had essentially taken the fall semester off to explore quadriplegia. Thankfully, I had some really good friends who waited to take the required physics classes that semester so they could help me and take the class with me when I returned. Not being able to write, handle papers, pull out my laptop, etc. I can’t tell you how panicked I would have been returning to school without knowing they were there to help. CU Boulder also thankfully has a really helpful disability resource office; they helped with everything from writing the letters to my professors explaining my accommodations and getting me electronic copies of textbooks, to providing proctors for tests, and so much more.

After 2-ish weeks out of the hospital, I was right back at it and signed up for the next classes I needed: Quantum mechanics 2, Experimental physics 2, Thermodynamics, Teaching and learning physics, and Plasma physics. I apparently just ignored the whole easing my way into things, I think I just figured I would drop any classes that seemed like they were too much; you could always drop classes without penalty [other than the blow to the ego] within the first few weeks of the semester. One thing that worked in my favor was that, before my accident, I had realized that taking notes was just not my thing, no matter how bad I wanted to have beautifully written notes filling the pages of my notebooks. I was always panicking, what was I supposed to write down? Everything? The important parts? What are the important parts!? In any case, how am I supposed to write things down and rapidly copy formulas and still think critically about what is being said? Instead of taking notes I would try to analyze what was going on in class and participate as much as possible. I asked a lot of really dumb questions in this endeavor, but I also found mistakes or gained a new understanding a good amount of the time asking those questions; questions that other people had but thought, “oh, that is probably a dumb question, I just won’t ask.” Also, as part of my accommodations from the school, the professor was supposed to arrange a note taker for me, but typically just ended up giving me their own notes that the lecture was based on. I’m honestly at a loss as to why this isn’t standard for all students, freeing them to participate and engage in class; it was obviously a great resource.

With the help of my friends in the physics department, the school, and the professors, I was able to dive right back into classes. At the start of the program, I was already a 28-year-old who hadn’t done academic or serious math in almost a decade going back to school for physics, now I was a paralyzed 30-year-old going back in the middle of a physics degree. I definitely felt out of place, especially when people had to rearrange entire classrooms just so my big ass wheelchair could fit. There were also logistical problems, such as construction blocking the only handicap entrance, elevators being down, some inanimate objects blocking a sidewalk, snow, ice, rain, etc. With my power chair, there were days when it was raining hard enough to jeopardize the electronics of the chair; it’s mildly humiliating to say you can’t come to class because of a bit of rain. My professors were all pretty understanding and worked with me on dealing with any issues that came up.

CU Boulder campus

One of the biggest logistical issues that I had to overcome was my inability to write; and when pretty much all the homework and tests involve writing line after line of equations or diagrams, that is a significant deficiency. There are a few programs on the computer that allow me to write out equations using voice to text. First, there is the basic voice to text program Dragon Naturally Speaking, which works with Scientific Notebook and MathTalk to transcribe complex equations, provided that you learned the specific commands and NATO alphabet [Alfa, Bravo, Charlie, Delta, Echo, Foxtrot, Golf, Hotel, India, Juliet, Kilo, Lima, Mike, November, Oscar, Papa, Quebec, Romeo, Sierra, Tango, Uniform, Victor, Whiskey, X-ray, Yankee, Zulu]. I had a few weeks while I was in the hospital to practice using all of the programs, but that ended up being an hour or so a day, a few days a week; not exactly enough time and dedication to learn a new lexicon. Even when I was supposed to be practicing on my own, I was typically practicing navigating around the computer using only voice controls. You can tell the computer to click on certain common items and use a grid system to click on things that there aren’t shortcuts for; essentially it breaks the screen up into 9 equally sized boxes, each time you select a box, that box is then subdivided into 9 boxes, continuing on until you tell it to click [ex. “Mouse grid – six – three – two – click”]. It took a few weeks of actually doing homework to actually have the ability to read or think of a formula and be able to transcribe it without breaking concentration to recall how to get the program to do something. It probably took that entire first semester to get comfortable going max speed and having the limiting factor be the computer rather than me. Here is an example of an equation from a homework assignment from my Quantum Mechanics II class and the commands to type it out:

Time-dependent perturbation:

[“Charlie – Subscript – Two – Out – Parens – Cap Tango – Out – Equals – Fraction – One – Over – India – hotelbar – Out – Integral with limits – Zero – Move up – Cap Tango – Out – Angle brackets – Two – Absolute value – Cap Victor – Subscript – Zero – Out – Xray squared – Echo – Superscript – Minus – Fraction – Tango prime – Over – Tau – Out – Out – Out – One – Out -Echo – Superscript – India – Parens – Cap Echo – Subscript – Two – Out – Minus – Cap Echo – Subscript – One  - Out – Out – Tango prime – Over – hotelbar – Out All – Delta – Tango prime”]

Keep in mind that this is the first line of 12 that get significantly more complicated as we move on [shown below]. If you speak too quickly, the program tends to get confused and either glitches out or it just decides to write gibberish. What’s funny is, most people are probably looking at that thinking “What. The. Fuck. Does any of that mean?” while some mathematician is probably looking at my work thinking “This fucking moron…” In a room of 100 normal people, I’m top 1 or 2 in math, in a room of 100 mathematicians, I’m bottom 1 or 2… ok, I’m dead last. In any case, as you start to learn the alphabet and the commands you learn just how fast you can input commands without it basically switching to Wingdings, I know it already looks a lot like Wingdings to a lot of you. The thing is, it’s still painfully slow and I am particularly bad at working slowly; I’m not sure what it is but it’s like the faster I work the less time I give myself to second guess myself and get caught just thinking about the next step rather than just trying it. A portion of it is also the fact that the cost of making mistakes was significantly increased; I couldn’t just erase a line and quickly rewrite it, every line required a significant amount of energy, so I tried to avoid mistakes at all costs, which wasn’t ideal for my style of working or learning. Before my accident, I basically just blitzed through problems assuming that I’m a genius and my attempt to solve it was obviously correct, and in the end when I realized I’m an idiot and completely missed something, I’d go back and fix the issue. Honestly, I never found a solution to the speed issue, I just accepted the fact that things were going to take longer and things would be more difficult because of it.

1.)     Time dependent perturbation

- The Wolfram line is essentially the mathematical equivalent of “I googled it” – Could I have done it myself? Yeah, but it wouldn’t be quick and I’d probably still have to look it up to verify that I got it right.

For my tests, I would show up to the disability resource office, who would set me up in a room with my laptop, sometimes with a proctor, sometimes without. Originally, they tried to have me use their computer instead of mine, for obvious reasons [cheating… if I felt the need to clarify, was it really obvious?], but seeing as they didn’t have any of the specialty software pre-trained to my vocal patterns, that idea, much like me, didn’t really have legs… working ones, at least. They also offered to have someone act as a scribe but either they aren’t in physics so describing all the letters and symbols becomes an issue, or they are in physics and you are then taking a test in front of an audience who knows the material and is, without a doubt, judging you. Thankfully, with the voice-to-text program, even when there was a proctor, to understand what I was writing they would have to really pay attention and decipher all of the different commands.

Still, there is always that ridiculous feeling that everyone knows what you know; even if you just learned it seconds ago, everyone else in the world instantly knows the same information. Watching a documentary on pistol shrimp, my brain moments later “obviously Sámi children [indigenous Finno-Ugric people, best known for being semi-nomadic reindeer herders in northern Norway, Sweden, Finland, and the Kola peninsula in Russia - predictably the English name for them is offensive to them… sigh] know that pistol shrimp, which live in tropical waters, create a cavitation bubble that momentarily generates temperatures around 4000° C [lava is ~1000° C, surface of the sun is ~5500° C] and a flash of light from sonoluminescence… I mean I know it so why wouldn’t they?” [Animalogic]. I used to be one of the first few people to finish exams, but now I was getting twice the allowed time and I was using all of it; even knowing exactly why, it was still a blow to my ego. It’s funny because it wasn’t like I was the first to finish because I was the smartest, I just either knew the answer or I didn’t; slowing down had somehow erased that confidence, rather than the other way around.

More than any other, the class with the most hoops to jump through was definitely Experimental Physics II. As you might imagine, doing experiments with sensitive equipment is already a nightmare as a quadriplegic with no hand function, but then you add in the fact that the lab is not set up for an enormous power chair, not being able to write in the notebooks, and all the other “smaller” issues and things seemed really intimidating, before ever considering the actual course material. But here again, with help from my friends, professors, other students, and the disability resource office, it seemed manageable. Instead of being the one to mess with the equipment, I would record the data on my laptop; instead of writing in the lab notebooks that are left in the lab, I would type everything out and send a copy to the TA after every lab. Honestly, there were 1 or 2 labs that were such logistical nightmares for someone in a wheelchair, I just used the data and experimental notes from a friend’s notes, without ever actually doing the lab myself. 

In the end, the first semester was pretty brutal. Not only did everything take more energy and time, but because of my condition at the time, I also just had less time and energy. I remember nights sitting in front of my computer completely exhausted, in a near panic because I have to finish an assignment but I need to take breaks to recoup energy and do weight shifts, stealing precious time, while knowing that some is going to show up at 8 or 9 pm to put you in bed for the night, ending all work. The worst feeling is knowing the answer or solution but not being able to write fast enough to actually finish the homework; like sitting in traffic when you are late or driving the speed limit in a school zone, you do it but it’s still infuriating. Thank you to everyone who helped me fumble my way through that first semester; I don’t think I would have made it very far without them, which really should stress how important it is to make resources available to non-traditional students.

Being able to drive again was probably the single largest step towards my independence, and also one of the most positive impacts on my overall mental health. It honestly feels like a scaled-up version of getting in my first power wheelchair, finally granting the ability to independently traverse the world outside the range of the powerchair and the ability to do so in inclement weather. Just the ability to go where you want when you want, without having to bother or coordinate with anyone else, is… just pure bliss, almost especially so when you have nowhere you need to be and just need a change.

The first day of driving lessons and instruction was with Barry, one of the people in the driving clinic at Craig hospital, he was another one of my favorite people I met through this whole ordeal. I figured that, because it was my first day, we would be in the smaller room using their driving simulator, which was essentially a fancy realistic video game. Instead, we went straight out to the car, where I figured I was getting a run through of the layout and a refresher on the controls, which we would run through in an earlier appointment. Boy was I wrong, when we got in the car, he had me lock my chair into place [there is a small bar underneath my wheelchair that locks into a device in the floor of the van], we started the car, and he told me to slowly take off towards the street. It felt like I accidentally snorted a bump of cocaine, the immediate spike in adrenaline cleared and sharpened all of my senses. It’s as if there was a slight haze or fog over all of my senses while I was relaxed, but as soon as he said I was actually going to be driving everything snapped into focus, it was game time. Can we also just pause to recognize the balls of Barry to get into a 2.5-ton death trap with people who can’t really control their limbs and say, “Jesus take the wheel, and let’s go play in traffic!” Obviously, he was more responsible than this and he had a set of gas and brake pedals on his side of the car, but he is still consistently putting himself in significant danger to help us get a bit of independence back. I’m nervous about getting in the car with some fully able-bodied people; though, as mentioned previously, I have been in the car for a lot of accidents.

Anyway, to give you an idea of what the setup looks like, I sit in my powerchair in the space where the driver’s seat typically sits. On the steering wheel there is a free spinning plate with three padded pins, one goes in your palm and the other two go on either side of your wrist allowing you to turn the wheel without requiring hand function. Just to the left of the steering wheel, there is another tri-pin for your left hand. This tri-pin controls the gas and brake, where you push it forward to activate the brakes and pull it backwards to activate the gas. Given that the vertebrae in my neck are almost entirely fused [of the 7 cervical vertebrae, the C3 vertebrae is the only one not fused with titanium hardware], turning your head to check your blind spots just isn’t a thing, so there are additional curved mirrors to help you build a better picture of what is going on around you.

For that first drive, as soon as the van was put into drive, the reality of the fact that I was in control of such a big vehicle became very apparent. I was nervous to even ease off of the brake and begin creeping forward, it felt like an action that couldn’t be taken back; possibly because I wasn’t sure that I would be able to reapply the brake once moving; it’s terrifying how quickly situations involving speed can get out of control [see zipline base jump video]. Remembering that Barry was also able to stop the van, if necessary, I said fuck it and slowly released the pressure on the tri-pin and the van creeped forward as I began to make the left turn to go down the driveway toward the street. Everything seemed okay so we headed out for a drive around the neighborhood surrounding the hospital and he guided me turn by turn to an empty church parking lot. There, I was able to practice the most basic maneuvers; I practiced stopping and starting over set distances at different speeds and different levels of urgency, and I practiced doing figure eights around the length of the parking lot, letting me test steering at different angles. Keep in mind that with no trunk muscles, every turn wants to topple you over and both hands are occupied with the very thing that is making you fall. I found that there was one degree of left turn, as it tips me away from the door, taking away something to brace against, that, even with a belt around my chest to hold me in place, is always sketchy, even to this day. I imagine it’s similar to an able-bodied person trying to drive the van standing up; if you are taking a wide left while accelerating. You can probably do it but it would probably feel really sketchy. That was it for that evaluation, but there would be more lessons to meet the required time driving, but this time in my own van instead of theirs.

Once Barry got a chance to evaluate me in the demo van, he wrote up a prescription, which was then passed on to be signed off by my doctor. With this prescription I could then go to Colorado’s Division of Vocational Rehab (DVR), who work with disabled individuals to help them get back to work, and they helped pay for the necessary adaptations, which can be quite expensive. It took a good deal of time to coordinate everything and get the van modified, but over that time we determined I had gotten stronger and didn’t need some of the modifications, making the final bill cheaper. They added a lockdown to the driver’s side, added the hand controls, and added a few more little modifications for things like turn signals, wipers, and window switches.

Over the next few trips out, this time in my van, I practiced on increasingly busy streets, leading up to highway driving. Merging into traffic at speed, whether that be while getting on the highway or just one of those curved right turn lanes, is probably the worst or most stressful thing to do with a cervical fusion. Imagine pinning your shoulders to the back of your seat and looking straight forward as you make a right and merge into traffic, and your only reference for what is coming up behind are your mirrors. Do you trust your ability to judge distance and speed? Can you tell which lane they are in? Give it a try next time you are driving… but definitely actually look and check before merging. Similar to my first time learning to drive when I was 15, I picked up the mechanics of driving fairly quickly, but it took a lot longer to actually feel confident in my driving.

After driving the requisite number of hours with Barry, he signed off on the paperwork for me to get my driver’s license. It honestly felt wild that they would give me a license at all, especially when I couldn’t open the door to the DMV, couldn’t sign my name, etc. It felt reminiscent of the time I took the bus from St. Louis to Chicago to go to the Japanese consulate to apply for my Japanese passport and couldn’t understand the guy at the counter and couldn’t read any of the paperwork, meaning I had to ask him, in English, of course, to fill it out for me.

In the beginning I would take inconvenient routes just to avoid certain turns or streets that were particularly stressful. My confidence has grown significantly, but I think a small amount of diffidence is necessary; it’s when I start to think everything is under control that I find myself most susceptible to surprises.

I have dreamed about switching vehicles multiple times, and there are a few options available. The first option would be to go with another van or SUV, but the only real motivation to switch would be to switch to something with 4WD/AWD, for the snowier days here in Colorado. New, these kinds of vehicles seem to start at about $80,000… START at $80,000… If I were to go down this route, I would definitely be looking on the used market. The next option would be to get a pickup truck, again, for the 4WD/AWD and ability to transport my powerchair; there are a few companies that are custom modifying pickups for wheelchair access. Used trucks are around $50,000, new SUVs start around $65,000, and new trucks start at about $80,000. The third option is to go with a normal car, which I would have to be in one of my manual wheelchairs to use and would make it impossible to transport my powerchair. This option is the most appealing financially because you can buy pretty much any car that fits your budget; there are obviously logistical barriers with some cars but they don’t represent a financial barrier. However, it is also the most limiting option; the thought of never being able to use my power chair outside of the immediate vicinity of my house gives me a bit of anxiety. I often see Instagram posts showing off the available tech for accessible vehicles, where the comment section is dominated by discussions of it all being great but way too expensive for the demographic; imagine if normal entry level vehicles started at $80,000+, and then consider that people who need more modifications typically earn less but the cars and associated modifications only get more expensive.