A day in the life of four wheelers

Alex Ghenis, Paula Larson, Ian Jaquiss and Ellen Stohl are four very different people with disabilities — with one similarity in common: Each agreed to share a day of their lives, taking us on a tour of what do they do, where they go, how they adapt, and the tools and products they use to make it all work.

By mqadmin, New Mobilty September 1, 2015

Most Wednesdays

by Alex Ghenis

Most of my Wednesdays start at 6 a.m., and today is no different. My personal attendant, Jim, who I’ve been working with for a couple years now, comes into my room after a quick drive from home. I have a suprapubic catheter, and we’ll be switching from a bedside bag to a leg bag later. But for now, Jim gives me an extra minute’s rest by quietly rinsing out the leg bag before we do stretches. When he’s done, we stretch my arms and legs and then change out the bags before Jim brings over my shower chair. Right after my accident I would have moved over using my Hoyer lift, but I switched to pivot transfers about 10 years ago and haven’t turned back. To do the pivot, Jim locks my shins between his thighs, grabs under my shoulders, and then shifts his weight back to lift my butt off the bed and swing me over to the shower chair. He’s only 5 feet 6 inches, but it works like a charm.

Morning routines are interesting. It’s two hours from the time Jim arrives until I’m up in my chair, which is why I’m waking up at 6 a.m. just to get to work on time. I can’t avoid the routines, so I do everything possible to make the most of my time — just like my half-hour routine at night, where I watch the Daily Show and laugh myself to sleep.

It’s a minute later and Jim has rolled me into the bathroom. I do a bowel program every day using a combo of two suppositories: Magic Bullet and CEO-TWO, which is the most effective setup I’ve found so far. Even with the good combo plus digital stimulation to wrap things up, it can take a while, so I browse the Internet on my laptop in the meantime. We’ve figured out a setup with folded towels and a plastic tray that helps the laptop stay stable on my lap, and Dragon NaturallySpeaking makes it so that I can type if I need to. My go-to morning websites once I’m set up are some Cal Berkeley sports blogs, climate change news, and trusty old Facebook. So if you see me post something at 6:30 a.m., you’ll know what I’m doing.

After things wrap up, I take a shower — but only three times a week in consideration for the California drought — then get dressed and in my power chair. Some podcasts on my bedroom speakers make that part of the routine go by faster and seem less like a chore, so I start my day out feeling fresh. Today we’re listening to Stuff You Should Know’s podcast on clowns, and Jim shudders as he tells me about his 6th birthday party. I’ll spare you the details, but it’s a hell of a story. Trust me.

Breakfast is pretty straightforward, and the only disability trick I have is coffee-related. As a C5 quad with no fine-motor dexterity, I use tenodesis to grab things — this means I flex my wrist and use the natural motion that results to pinch and hold things. It turns out beer steins have the perfect type of handles for holding a hot cup without burning my hand, and luckily the Dollar Tree has huge ones. As I nurse some piping java out of my 25-ounce stein, I thank Oski (the Cal Berkeley mascot, my main deity) for caffeine and know I’ll be productive once I get to work.

My job at the World Institute on Disability is a half-mile from my front door here in Berkeley, and going full-speed down side streets gets me there in under 10 minutes. It’s amazing to have work this close. I don’t have a rampvan and instead use the Bay Area’s solid transit system, but rolling straight to work is the easiest thing possible. I arrive at the office at 9 a.m. and my coworker Kat is sitting at the desk right next to mine, same as usual. She does assorted projects and manages some human resources work, and she’s also one of the designated staff for handling reasonable accommodations, like when I need help microwaving lunch later. We say hello and crack a few jokes, then she unpacks my backpack and throws my laptop on my thighs.

I was once nervous about working because I thought I might lose my Medi-Cal and In-Home Supportive Services, which pays for my personal attendants. If those disappeared, my earnings wouldn’t come close to keeping my head above water. But after chatting with some friends and new coworkers, I realized that working is completely possible if I know how to navigate the regulations — check out www.db101.org for tips on that. So when I started working I signed up for California’s 250 percent Medi-Cal working disabled program and was able to keep both. Now, I work on a ton of policy issues — my main schtick is actually how climate change will hit people with disabilities — and it’s fulfilling to be doing something good with my time. It still doesn’t hurt that the day’s going by quickly, and I’m not complaining when the clock hits 5 p.m. before I even realize it.

After work is a great time to hit the gym, and by 5:30 I’m in the lobby of UC Berkeley’s Recreational Sports Facility, ready to work out. An old friend meets me and we head to the locker room where he helps me put on my workout shirt, a raggedy screen-print tee a kid made for me when I was a camp counselor in 2007. As I head out of the locker room, I remember when I started doing cardio at the gym a few years ago and realized there weren’t any good options for doing weights. Some research brought me across the UPPERTONE, which is built for folks with SCI, so I decided to talk with management and started a petition to get one in the RSF and it ended up a success. A lot of times it’s easy to just be frustrated when there aren’t any accessible options, but it’s better to channel that frustration into action. That’s what happened with the UPPERTONE, and today I’m able to build up some muscle because of it — and so are a few other folks that use it on the regular.

I’m done with the gym an hour or so later and head out. Some evenings I’ll go to an event around town, like the weekly poetry slam at the Starry Plough pub by my house. After all, it’s nice to stay social and keep life fun. But today’s been a longer one, so off to home I go. My roommate, who also helps with dinner and cleaning and throwing me into bed, is hanging in the living room playing with her cat when I arrive. “Are you ready for some food?” she asks. “Of course!” I reply, so we throw together a salad and I munch away while watching SportsCenter — they’re talking about Cal Berkeley’s basketball win earlier today, so life is good.

By the end of dinner, I’m yawning, so we switch straight from food to the night routine. Getting into bed takes a half hour, a perfect amount of time for the Daily Show on my bedroom television. The yawns get bigger as I start to sink into my comfy memory foam mattress. The foam makes it so I don’t get pressure sores while I sleep, and the full-size is big enough for someone to stay the night, as opposed to my air mattress from the few years after my injury. Tonight is a solo one — womp womp — but I’ll be crashing out so quickly it wouldn’t make a difference. My roommate says good night as she closes the door, and I fall asleep, recharging for another full day tomorrow.

An Utterly Unpredictable Day

by Paula Larson

Once upon a time, a day in my life would have been utterly predictable.

I would lose an early morning fight with the alarm, wake up later than I should — man, I hated mornings — stumble out of bed and rush to work. I would work at least eight hours at my place of employment five days a week, 52 weeks out of the year, except for the way-too-rare vacation. I knew where I was going every weekday, what I’d be doing and how much I’d be getting paid. And I knew that I would be getting paid.

That was then, this is now.

This is what I did this morning.

I lost an early morning fight with the alarm because I had to get up to take my wife to get her truck fixed. Since I have spina bifida and adult onset tethered cord, my arms and legs spasm, so I slowly stretched them before grabbing my crutches. Then I stood up while stretching my high tone right ankle back to its rightful place. Ahhh … it’s good to get everything rolling.

I crutched the six feet or so to my royal morning seat on the toilet where I did my first of the day cath and teeth brushing — even I, the queen of morning grogginess, don’t mix those two up. I imagine it would be stunning if I added up all the time I spend sitting on that toilet every day. I threw my sweats and a hat on and put on my two ankle-foot orthoses. These are plastic toe to knee custom braces that hold my ankles and feet in position all day. In what seems like another life, I was once an orthotist and I made the left brace. But I haven’t been able to do that work for a few years now.

I crutched it to the car and took Julie to work after dropping the truck off, then headed back home to take my first meds of the day. Gabapentin — it’s what’s for breakfast!

I feel like I’m more productive if I get out of my sweats and into real clothes. OK, I’m talking my idea of real clothes, so a T-shirt and jeans — I call it “Paula business extra casual.” Others call it slovenly. Whatever. So I took a shower, got dressed and started the long commute to my office — in my living room.

That’s right, someone’s a freelancer!

Yes, instead of my former predictable full-time jobs, I now work several part-time gigs to bring home the bacon — well, soy bacon in my case. The pay’s low, the security is non-existent, but the commute is the best.

So this morning I got dressed, got one shoe on and had just found the other when the phone rang. One of my bosses tells me there are two more cases for me that have fallen through the cracks that need to be processed ASAP.

I hung up from her, found my second shoe again after it somehow got lost during a single phone call, and the phone rang again. It was the pain clinic about my appointment. While on the line with them I got a text from Julie and a phone call from the bank. I hung up the phone, answered the text and called the bank back. I wrestled with the bank for 20 minutes, hung up and then got another call from my boss. We talked about work stuff for a while as I found my second shoe again (seriously, did it wander off on tiny feet of its own?) and finally wrestled it on my foot.

Finally, both shoes on, I tossed my crutches aside, hopped in my wheelchair and rushed from my living room to my other office — my kitchen table.

This is my new, unpredictable life as a freelancer. I’m a freelance writer and freelance compliance reviewer, and I work part-time and sporadically for our parks and recreation department. In between that I apply for other jobs that would theoretically pay me regularly. Oh, and I am a community columnist for our local paper this year — that’s the gig that puts the “free” in “freelancer.”

Far from my former 9-to-5 job, my working life now is completely by the seat of my pants. On any given day I might have no work to do, or I might get pulled in different directions by three or more different jobs.

On the day I am writing this article, for example, I had those morning phone sessions. Then I sent an email to my parks boss about an off-site meeting we had the following day. After that I worked on one of the long-lost compliance projects for a couple of hours and submitted it while emailing that boss that the second job wasn’t making it into my email.

While waiting for the second long-lost job to arrive in my email, I did background research on a job I am applying for. It’s a different type of job than the ones I had when I was more physically able, as are all the jobs I have applied for recently, so I have to make my resume sound like I have an idea that I know what I’m doing (even when I don’t have any idea at all).

Google Docs? Umm, sure, I can do that! I was practically born doing that. I’m totally who you need to hire.

After working on this for a while, I noticed it was sunny and warm outside. What does a freelancer do when it’s sunny and warm? Head to my third office, which is outside on the chaise lounge, of course.

So I packed up the laptop, water, phone and a pair of binoculars (I have to be prepared to see fabulous birds outside) and commuted to my third home office on the deck. This is a seasonal affair and completely at the mercy of the Pacific Northwest weather, but when it’s good, it’s very good.

Sprawled on the deck chair, I traded emails with my compliance boss — that file still won’t make it to my email — and worked on an upcoming column.

After hours of being glued to my laptop and phone I headed out for a two-mile “jog” down on the waterfront in my wheelchair. I appreciate being able to schedule my day however I need to, and I’m a lot better about getting exercise than I was when I worked 9 to 5. After my jog I do arm exercises and use the balance disc to work on my trunk strength for sled hockey. I started playing a couple of months ago and after tipping over repeatedly, it became apparent that my trunk was junk. The balance disc has improved my strength and I don’t tip over nearly as much. I can even make turns without falling over — sometimes.

Then I headed out to pick Julie up from work, we picked up the truck and went out for dinner to cap off the day.

Tomorrow will be completely different, which is the best part of the freelance life. It is work I can do on my own, at my own pace and with a maximum amount of flexibility. It allows me to slowly work my way back into “real job” shape while recovering from a yearlong health vortex. My confidence was shattered when my health went off the rails and I really didn’t begin to get it back until I started working again.

I’m applying for more traditional work now. I need the money and could use the company, but I sure will miss my commute to the sunny back deck.

A Fastidious Day in the Life

By Ian Jaquiss

For most of my life, 48 years as I write this but 49 when you read it, I have been an early riser. I have never been a good sleeper, but I seem to be especially bad lately. Initially, I credited an eagerness to see what the day held. Now I blame an aching body, not terribly well cared for, showing the signs of living with a spinal cord injury since I was 2 (car versus pedestrian — I lost). Most days, I wake before the alarm and quickly shut it off so my wife can sleep a bit longer.

For most of my life getting out of bed and into the wheelchair has been easy for me, and I realize now I took that for granted. Standing to transfer is not as easy as it always was. I am an incomplete para with full feeling, which has been a blessing most of my life — but now a curse because I hurt.

Once out of bed, I zip to the bathroom to cath and brush the sludge out of my mouth. Then, after keeping the dogs from following me to the bathroom and hoovering any cat food left, I make my way to the front of the house, through the maze of dog and kid toys strewn about. I try to do everything as quietly and quickly as possible to lessen the chance of waking the better halves (my wife and 9-year-old daughter). I have learned the longer they sleep, the greater chance I have for a more stress-free morning.

My morning duties are to let the dogs out and in, feed them and get the various morning drinks started. I am a coffee guy. To be most precise, I am a pour-over coffee guy and have a kettle with a long, slender spout specially designed for making coffee the way I do. My wife got it for me, but were my father alive, I suspect he would be unimpressed by my fastidious morning rituals. I start another kettle for the tea drinkers (I am looking down my nose at them in spirit while I type that). From there it is time to prepare my yogurt parfait. My wife makes our yogurt, thanks to a suggestion from one of her fellow PTA do-gooders. Everything that happens in the morning does so with the local NPR affiliate on in the background. The bosses are usually up by the time I have made my breakfast, coffee and my daughter’s tea. We have breakfast together and then peel off to get clean and dressed. One bathroom for three people including a soon-to-be teenager is really not enough, by half.

For most of my life getting out of bed and into the wheelchair has been easy for me, and I realize now I took that for granted. Standing to transfer is not as easy as it always was. I am an incomplete para with full feeling, which has been a blessing most of my life — but now a curse because I hurt.

Once out of bed, I zip to the bathroom to cath and brush the sludge out of my mouth. Then, after keeping the dogs from following me to the bathroom and hoovering any cat food left, I make my way to the front of the house, through the maze of dog and kid toys strewn about. I try to do everything as quietly and quickly as possible to lessen the chance of waking the better halves (my wife and 9-year-old daughter). I have learned the longer they sleep, the greater chance I have for a more stress-free morning.

My morning duties are to let the dogs out and in, feed them and get the various morning drinks started. I am a coffee guy. To be most precise, I am a pour-over coffee guy and have a kettle with a long, slender spout specially designed for making coffee the way I do. My wife got it for me, but were my father alive, I suspect he would be unimpressed by my fastidious morning rituals. I start another kettle for the tea drinkers (I am looking down my nose at them in spirit while I type that). From there it is time to prepare my yogurt parfait. My wife makes our yogurt, thanks to a suggestion from one of her fellow PTA do-gooders. Everything that happens in the morning does so with the local NPR affiliate on in the background. The bosses are usually up by the time I have made my breakfast, coffee and my daughter’s tea. We have breakfast together and then peel off to get clean and dressed. One bathroom for three people including a soon-to-be teenager is really not enough, by half.

Interestingly and kind of sadly, I have yet to meet a fellow OHSU employee who uses a wheelchair or even a scooter. Although it’s cool being the only person in a chair here, I am bummed that I don’t get to lord my cool titanium chair with red spokes over lesser chairs.

The commute home is often slower than the morning drive, but still it is not bad. In the summer, I assume cooking and cleaning duties for the family. Because the weather is generally perfect here in the summer, I grill almost every night and we only use charcoal. Food, coffee and beer are three of my biggest passions, and if all goes well, a good day will encompass all three. We try to stay outside as long as light provides or until the kid demands to go to bed. Actually that has never happened, but allegedly there is a first time for everything.

When we go inside, I like to get out of the fancy wheelchair as soon as possible. The newly acquired aches, pains and spasms that are affecting my sleep and creeping into my waking hours are less bothersome when I’m out of the chair.

My nighttime rituals involve getting the kid into bed, making popcorn using a popping device on the stove, and reading. I vowed to the kid that I would give up television for a year and I have been mostly good, other than the Letterman finale and one NBA finals game.

My cathing program consists of “as needed” or when I haven’t gone in a while. That has worked well, generally. Sleeping is my biggest challenge right now, but I am working on it.

A Typical Day as Ellen

by Ellen Stohl

“Woke up, got out of bed, dragged a comb across my head…”

Ah — if it were only that simple. As an incomplete quadriplegic of 32 years, my mornings start out a bit slower. On Tuesdays and Thursdays I teach at Cal State, Northridge, so the alarm rings at 6:50 a.m. On Mondays and Wednesdays I have until 7 a.m. and on Fridays until a glorious 7:15 a.m. Thankfully, the weekends are usually alarm-free; time to sleep in, enjoy a good roll in the hay, or both!

I usually wake throughout the night. There are spasms and pain to deal with, along with a snoring husband. Add in dogs, cats and a kid that all consistently find their way into our bed each night, and it becomes quite full. But honestly, even alone I have trouble sleeping, so I wouldn’t have it any other way. I usually drift back into a dream state an hour before the alarm sounds and wake up in a groggy fog begging for another five-more-minutes. My daughter’s sing-song, “wakey, wakey,” or the melodic tune my husband, David, has chosen to arouse the masses usually clears the fog.

Once alert, I lie in bed a few minutes and try to reflect. I read the canvas print across the room that reminds me to “Be thankful, live fully, laugh often, and appreciate life.” I take the words to heart, then slowly use my arms to straighten my legs, remove the knee pillow, and push myself into a seated position. I usually have enough strength to achieve this on my own, but occasionally need a strong hand to assist me.

Once up, the transfers begin. Most are fairly easy, but I still need support so I don’t fall. I fell a few years ago and broke my leg in three places, so now I’m overly cautious. David helps in the morning, and since we have been together 21 years, he is well aware of my needs. From bed to chair, chair to toilet, back to chair, to shower, to chair again — I glide easily from one to the other because everything is the same height. I have the Toilevator toilet seat riser mounted under my commode. No one else can touch the ground when seated on it, but it makes transfers a breeze. I slide over effortlessly, pull each leg up to the seat of my chair and grab my catheter kit — a mirror, book light and my catheters. I position the mirror, adjust the book light, find the urethra and wheeeee, literally.

I’m lucky I have enough finger control to cath independently — at least, most of the time. Occasionally, the urethra is uncooperative and I need an extra set of eyes and hands to get the job done. I recently got Botox shots in my bladder and that has made urinating a breeze. No leaking and a consistent schedule mean only a few trips to the toilet a day. Fewer transfers equal greater independence. Bowel movements aren’t as simple or consistent. My injury is incomplete so I know when I have to go, but keeping the right consistency to make the process run smoothly is difficult. I try digital stimulation every morning to ensure the bowels are emptied. This is usually a quick process that helps me maintain confidence throughout the day.

Once up and showered or “spit-bathed,” I get dressed, put on a little make-up and head for the kitchen. I hate the make-up process. My gimpy fingers find it hard to create a straight line, but without a little color I look like a ghost with no discernable facial features. I’m thinking about permanent make-up, but find my husband resisting the idea. He tells me I don’t need it and am beautiful as I am. I appreciate the sentiment, but let’s be honest, the rest of the world does not view me through his loving eyes. I figure a dab of eyeliner, a feather of a brow and some naturally colored lips that don’t need to be applied daily would make me feel prettier and move my morning along at a much quicker pace.

David is in charge of breakfast for everyone and up until this year I was responsible for packing my daughter’s lunch. Suddenly at 12, Zoe has taken over packing her own lunch, but I still get the final word by checking the contents for a well-balanced meal and adding a Lunchbox Love note. In exchange, Zoe makes me a cup of coffee to go and stirs up some Mega Greens so I can wash down a handful of vitamins. One final check for homework, backpack, work items, etc., and we hit the road. I drive my daughter in my adapted Scion, and my husband picks her up.

On teaching days, I use a Go-Ped scooter under my front casters to transport me around campus. I can’t get it into my car alone, but at a university there is always someone to help. I’m hoping to get a Smart Drive to increase my mobility, but insurance is slow and hard to convince. I have been assigned a classroom in my department’s building so I can easily access the copiers and office support. I also use the same class for both courses and have my own locking file cabinet in the classroom itself. This is a rarity for college instructors, but without it I would have to tote around a ton of stuff. Teaching itself is easy for me. I use the computer to provide visual support for course content and can write on the whiteboard if need be. I plan my semester carefully so I can have everything ready, and I use my experience as a person with a disability to enhance my lectures. I teach the Psychological Foundations of Learning and Teaching class, so we cover a lot of content on individual differences and needs.

After work, I take an adaptive phys-ed course on campus where I get range-of-motion and a personalized exercise routine. Tuesdays and Thursdays are full days, and by the time I get home, I’m exhausted. Luckily, David plays tennis those nights so it’s just my daughter, my PCA Jeff and me. Jeff generally gets take-out for us or we put together a small meal. I often cook the other nights, using David or Jeff as my sous-chef. They are also in charge of dishes. We have a weekly housekeeper, but daily upkeep is a joint effort. I need things neat and organized to function well, so everyone does their part. Amazon Prime and Prime Fresh have reduced the shopping burden and made life a lot simpler.

My daughter is more independent now, but I still check homework daily and go over upcoming events. On days I don’t teach, I grade, write, audition or pursue some other interests or endeavors. I find I’m always doing something. Every other Wednesday, I take a spa day and get my nails done, and on Fridays, I volunteer at my daughter’s school. Weekends are usually family time and include lounging around, reading, entertaining or catching a film. Most days end shortly after dinner. On a rare occasion I’ll go out with my girlfriends for happy hour, but I prefer to entertain at home. My house has been designed to meet my needs and in it I have the environment and support to function independently. I am thankful every day for all that I have. I know life using a chair makes everything harder. But as Kirk Kilgore, an amazing man and quadriplegic, once told me, “Walking might make life easier, but that doesn’t mean it would make life better.”

Source New Mobilty