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I live in Chicago, a city that has widespread public transportation. The city is big and it takes a long time to get from place to place. As the years have passed, my mobility has lessened and I go to fewer and fewer places.

When I moved here in 2005, I brought my car from the suburbs. Because I lived close to a train and bus stop and across the street from a grocery store, I figured I could do without a car. In 2011, I decided to sell the car. At the time, I was unemployed and saddled with a 10-year-old car that needed repairs that would cost more than the value of the car. But the biggest factor in my decision to sell was that it hurt like hell for me to drive due to the sciatic pain running down my left leg. That last one was the nail in the coffin.

Chicago is located on Lake Michigan and transportation is designed like wheel spokes, with the downtown “Loop” as the hub. Chicago Transit Authority (CTA) trains are a spoke to city neighborhoods, and the Metra trains are a spoke to the suburbs. Buses crisscross across the grid-like street plan to fill in the blanks. The CTA trains are color-coded based on service to different areas of the city. I use the Red Line, which runs north-south, parallel to the lake.

This design affects how and where I travel since getting around it is difficult for me. Although uncomfortable, the CTA buses and trains and Metra trains have one thing in common: I can stand if need be. Sometimes you have no choice but to stand because they are too crowded to get a seat.

Trains, buses, cars, and planes also have something in common. The chair design seems to go against the s-curve of the lumbar spine. As a result, in an effort to accommodate everyone, it is comfortable for no one. Where the curve of your lower back moves forward, those seats move backward, like a shell. Only on luxury cars or first-class plane seats do you have seats designed more fitting to the human spine. This is why I bring my inflatable Relax the Back pillow everywhere I go.

Inflatable Pillow

Inflatable Pillow

TRAIN

This is my main mode of transportation, outside of my partner’s car. In Chicago, stores, offices, and medical buildings tend to congregate around train stops, which usually means I stick with the train.

As you can see from the pictures below of buses and the train, the width of the seats is much narrower than my shoulders. I’m not an exceptionally big guy; in fact, my size is pretty much average in every way. I don’t believe that these seats were designed for everybody to sit in and sit back. These are by no means one-size-fits-all seats.

On this particular Red Line train car, some of the seats sit sideways, so passengers are facing each other across the aisle as the train moves in a leftward or rightward direction. These seats are extremely uncomfortable for me. The momentum of the train is a force that hits your lumbar spine. When the train is going sideways, I must exert a lot of pressure on my hips and core muscles to stay seated in the chair. Otherwise, I would be knocked in the direction the train was moving.

It’s more comfortable to face forward, and even more comfortable to face backward. But on the busiest trains, you rarely get to choose. Standing is always possible, although that brings the same pressure on my hips, which means standing upright is difficult as well. On that rare occasion when the train is empty and I have the choice, I will switch between sitting and standing.

I use the Metra trains to travel back to my hometown to visit my parents. I travel west on a CTA bus (30–45 minutes), then take Metra train north (1 hour), where my parents pick me up. It’s a difficult journey, but the good news is that Metra trains are significantly more comfortable, less crowded, and have more room to stand than CTA trains.

Metra trains use full-size railroad cars, while CTA trains, or the L (because the tracks are at times elevated), have smaller cars. Metra has double-decker cars. The rule is that you cannot stand on the lower level aisles because that interferes with passengers and the ticket-takers. (Passengers may stand in the vestibules between cars.) Standing on the upper floor is allowed. I just have to get out of the way of other passengers who need to pass me to get to the back of the car every once and a while. It’s an awkward way to travel 60 miles to a cornfield, but it beats driving any day.

CTA Train

CTA Train

BUS

CTA bus seats are similar to train seats, and I sit-stand-sit and use the inflatable pillow in the same way. However, it looks as though somebody got the memo about the design of the human spine and made some ergonomic changes in the newer designs.

Below are pictures of two buses. The first picture is from the bus with the older seats. The second one is the bus with the newer seats that I use this bus to get to my doctor’s appointments. These newer seats, although not perfect, seem to be more in line with the s-curve of the spine. I still use my inflatable pillow, but it’s always easier when the original chair has a more ergonomic shape.

Bus - old seats

Bus – old seats

Bus - new seats

Bus – new seats

CAR

I had grown up in the suburbs, where driving everywhere was a necessity. Living without a car in the city was an adjustment, but I am only car-less part-time. My partner has a car and we often use it when we travel together, depending on where we are going and the parking situation. Still, even as a passenger, I consider his car to be a torture chamber, although not as bad as the airplane, which I will get to later. Below are photos of his car and the many pillows I use in it.

It seems as if everybody recommends lumbar support when sitting in a chair, yet I don’t see anybody else carrying a pillow around. It took me a long time to not feel embarrassed about pulling it out on a train or bus. I had to get over it, though, like I have with so many other issues regarding my back.

The pillow from Relax the Back inflates automatically to a medium level and can be inflated by blowing into the inner tube. Or you could squish it together and let the air out. This is important because every place has a different shaped seat. Also, my back needs different levels of support on the same seat at different times. The inflatable pillow fills in whatever air is needed at the time. It is one of the most important tools in my toolbox to fight this disability the best that I can.

In addition to the lumbar pillow, I have another memory foam wedge pillow that I sit on to lift me up so that my hips are above my knees, to reduce pressure on the sciatic nerve going down my left leg.

On the rare occasion that I drive the car, I can use that pillow between my left leg and the driver’s side car door to keep the leg in place. It gives a little bit of relief, depending on the condition I am in at the time. I wouldn’t use the pillow that way when I’m a passenger side because the right leg doesn’t have the sciatica problem.

Lateral supports.

Sometimes I use that in place of the Relax the Back pillow when I need firmer support in the lumbar area. My ultimate wish is to find a pillow that blows up like the Relax the Back pillow but is half the size. Most car seats have lateral supports, the parts of the back of the seat that surround around your torso and shoulder. Because of these, blowing up the pillow to support the back also increases the pressure on the lateral supports. They push your shoulders into an unnatural position.

I used to think they should get rid of them, until my trip to Michigan, in which I lay on the floor of a van with little cushion to block the vibration of the car. Later, I took a trip in a pickup truck that only had a bench. The flat back of the seat was great for my lower back, but my body wasn’t locked in place like a regular car seat. I realize now that the lateral supports keep your body in place. Without them, it takes much more out of your core muscles to keep you in place, like I experience in buses and trains.

Most people never pay attention to this core action, or to the lateral supports, but like all things spine related, I have to deal with more. If I ever purchase a car again, this section will be the number one thing I take into consideration, more than the make or model.

My ideal car would allow for adjusting the lateral supports, lumbar spine support and location, as well as the raising the seat so that the butt can be adjusted to be higher than the knees. People with disabilities are constantly overcoming obstacles that others don’t even consider to be obstacles, or even consider at all.

Lateral Supports

Lateral Supports – 2017 Nissan Sentra

 

Small Lateral Supports

2017 Nissan Sentra Back Seat

I had not expressed any interest in driving ever again, in my whole life, due to the pain it causes. My occupational therapist had wanted me to practice driving with short trips—10 to 15 minutes, then work my way up. It’s difficult in a busy city to justify relinquishing a precious parking spot for a 15-minute drive, which would require another 15 minutes (if lucky) to find another parking spot, especially if I’m not going anywhere. But I did make the effort a few times.

Then I saw a commercial for the Illinois Back Institute on CNN and told my partner that I wanted to try it out. The closest office is a half-hour drive or a 1.5-hour train/bus ride. The travel to the Illinois Back Institute at first was so overwhelming that I almost quit because of the three hours of travel. My partner suggested I use his car while he took public transportation to work. I shivered at the thought of driving again. But I tried it anyway.

Although all the other people going there seemed to have great results, I went to the Illinois Back Institute for three months and saw only minimal improvement. This is the story of my life, for every physical therapist or chiropractor I go to. Everybody else seems to get better except for me.

This is not a put-down of the Illinois Back Institute (they were great to me), but rather my experience of long-distance travel to not get the results I expected. Although I didn’t see results from the treatment, the one positive result was I got out and drove again. It had been years. Now I feel confident I could drive if I had to, but know that there are limits.

Back in my consulting days, in 2007, I was working with a client in Silicon Valley for two weeks, giving me the weekend for leisure. I used one day for San Francisco and the other for Sacramento. I have this thing about wanting to see all the state capitals.

When I went to pick up the car at the airport, the car rental company upgraded me to a Jeep Grand Cherokee. The comfort of the seat shocked me. Mind you, this was in 2007 when I was still working. I also had a sitting disability back then, but it wasn’t anywhere near like today.

When I got to Sacramento and walked around the capital building, I was feeling good, so good that I was brave enough to venture out to another 2.5 hours west to Carson City, Nevada. After seeing two capitals in a day, I realized I had a five-hour trip home. Some days my body just works correctly and I have no fear. I don’t know if it was the dry sunny weather or the comfortable Jeep Grand Cherokee seats, but I did about 10 hours of driving that day. This is the equivalent of running a marathon to me!

I was sore, for sure, and sat in a hot bath when I got to the hotel room, but something about that day made it easier to drive 10 hours than a half-hour drive to the Illinois Back Institute. It’s been more and more difficult over the years and I would never attempt going from Silicon Valley to Sacramento today. I’m trying to figure out how to recreate those days when it just all seems to work.

In 2003, I had gotten advice to go to a special “biophysics” chiropractor in the Chicago suburb of Naperville, which was far from my home and my work. Including driving to my job, I had to drive a total of 3.5 hours and sat for eight hours in front of the computer as a programmer, three times a week for three months.

It was more than I could handle, but I was convinced that this chiropractor was different from all the others and was going to cure me (a story that has played out over and over in my life, like in the case of the Illinois Back Institute). I bore the pain because, as they say, “no pain, no gain.” I was willing to put up with it if I thought it would be worth it in the end. I’d like to think I know better now, but if I were to hear of a new treatment that required 10 days of difficult pain and I’d be cured, I would definitely take it.

I drove in extreme pain, sometimes screaming out the window as I drove. I would punch the side of the door while waiting for the light to change to green because I couldn’t take it anymore. I hit the driver’s side window and discovered it was very strong. These pain management exercises went on for a couple of months.

One time I hit the top of the windshield so hard that it cracked all the way to the center. For safety reasons, I had to stop the car. While waiting for help to arrive, I came to a realization. Something had to change. Not only could I not drive with a broken windshield all the way to Naperville, but the pain that influenced me to go to that chiropractor wasn’t going away, even after three months of treatment. I didn’t know then that I had 7 more years until my first back surgery and 14 more years until the writing of this blog.

Eventually, I asked my human resources department if I could work from home. Like when I asked for the standing desk, they looked at me like I was from Mars, and it was an uphill battle. My manager did not want to lose me and capitulated.

These were the ancient days of 2003 when none of us programmers (at least at my company) worked on laptops, so they asked me to bring in my home computer to set it up for logging into the system. I believe I was the first person at that company to ask to work from home and they worried.

Working from home worked fine. My boss was very understanding and knew that I wouldn’t be online while I went to the chiropractor and would make up the time that evening. But the treatment made it worse, rather than better. So the days I had to go to the office were more difficult, and eventually, I would have to go on short-term disability.

After a month break from work and the chiropractor, I went back to work with no long-term solution in hand. The initial period after that was a bit of a relief. Driving was easier, and so was sitting in the office. That might have been from a delayed onset of improvement from the chiropractor or the month off of work. I’ll never know.

PLANE

Back in my days as a consultant, I flew all around the United States and the world to meet clients and make programming changes to their systems. Towards the end of these trips, traveling by plane became unbearable. I used to shiver in fear at the airport when I was about to board the plane. I wasn’t afraid that the plane was going to crash, I was afraid of the pain from sitting in the seat. Plane seats are the worst of all seats, particularly if you’re stuck in Economy.

Their lateral supports protrude more and the seat curves into shell-like positions even more. Again, I am only an average-sized guy, so I can imagine how this is even more of a problem for larger people. And I know that I’m not the first person to address this issue not as a comfort issue, but a health issue. These seats are downright unhealthy. This is apparent by comparing the picture of a human spine to that of a plane seat. If you can ban smoking in a restaurant, regulation could be passed to ban seats that harm the spine.

I was put on a long-term project where I flew to Philadelphia on Sunday afternoon and back to Chicago on Friday night. I was blessed to have the same flight attendants each time. Like my London flight, I couldn’t clearly express what I needed from them. This was still only a couple years after 9/11, so anybody who didn’t stay in their seat got suspicious eyes.

After a while, the flight attendants started to recognize me. When I asked to stand near the back, by the galley, they were more comfortable with the idea. Of course, I had to sit down for take-off, landing, and turbulence. They stopped giving me dirty looks and even had conversations with me. Thank God, because my sitting disability was getting worse and flying was the number one cause of pain. This allowed me to continue working as a consultant a little bit longer. My client even had a makeshift stand-up desk waiting for me when I went to that office. How’s that for fringe benefits!

The client I worked for had a policy of giving Business Class seats to flights longer than eight hours. I flew to China three times during the 2008-2009 period. This policy made it possible for me to work the China project, as I would never have survived a 15-hour flight in Economy Class.

The first two times we took United Airlines and flew in Business Class. The seats do not lie 100% flat, but pretty close. There was more room to contort my body into different positions as needed. Most of all, the staff seemed to treat me better. When seeing me in my different poses, and once I explained my problem, they never gave me sinister looks again.

It’s important when flying that you don’t arouse suspicion in today’s scary world, and not being able to sit in a chair is suspicious to most people. This is something chronic pain sufferers of all types face, on top of judgment and shame. Public awareness and personal knowledge are needed to help people with sitting disabilities get the accommodations they need.

Because of a change in schedule, the third time I flew to China we flew in Air Canada’s Executive First Class since that airline does not have a Business Class between First Class and Economy Class. This was more like a flying pod where I could lie flat, twist around, even do some of my back exercises in there – a dream come true. I don’t need champagne and caviar. Just let me lie down flat. Even people without sitting disability appreciate this luxury.

Before going on disability, I asked if I could work from home while in Chicago, rather than going downtown to the office, which they allowed me to do. As luck you have it, at least for me, this was during the start of the Great Recession, and most of our clients preferred that we consultants do their work from home or our own office rather than traveling out to them, as budgets became tighter.

Plane

Plane

Plane

Plane

ACCOMMODATIONS

Today, I am pretty good at asking for what I need. I sit in the front seat of my partner’s car and make plans that limit traveling. My friends and family know that I need to sit in the front seat or else I cannot go.

One time, my partner and I traveled to a funeral for one of his family members. Plans got mixed up and his father needed a ride home. I did not know his father very well and didn’t want to show disrespect by asking him to sit in the back seat. So, I went in the back and endured the ride. This is a situation where I know I didn’t ask for what I needed but feel I did the right thing. My partner’s father did not speak English and I wasn’t about to try to explain what a sitting disability was. I chose not to “fight” this battle. Luckily, it was only a 20-minute ride.

These issues come down to the availability of accommodations. It is possible to design a seat that is comfortable, fits the curve of your spine, and lies flat, but how much is it going to cost? Luxury cars and first-class seats work better for people with sitting disabilities, but the longer a person has a disability, the less money they tend to have on basic needs, let alone luxuries.

I have to deal with what I have, so I need to communicate the best I can about my sitting disability to those I am traveling with. I have a note from my doctor for flying that, while not being able to automatically upgrade me to a first-class seat, will give flight attendants more wiggle room to try to help me. When traveling by car, I know to ask for the front seat, bring extra pillows, and know the type of car I will be riding in and how comfortable it is. I also know now to limit my travel time when possible, plan breaks, and to ask for help. It all comes down to communication so that others without sitting disabilities can understand. I need to tell them:

  • What my problem is.
  • How they can help.

 

Most people look forward to traveling, especially if it’s for leisure. Most people throw on their headphones or pull out a novel to read and just enjoy the ride. For people who suffer from sitting disabilities, it is a whole lot more complicated. There’s no such thing as hopping a bus or catching a train. There are no quick trips or short flights. Because of the inevitable pain, there is so much prep work involved, that even running a routine cross-town errand becomes an arduous ordeal. How I would love to go somewhere, anywhere, kick back, relax, and say “wake me when we get there.”