Many were hoping that I would write about my experience. And given all that transpired in one day, I am going to be splitting up this narrative into two parts. Without further ado, part one of my journey…
Perspective
While my #whatwouldyougive challenge started with my putting my rental wheelchair in my car (not an easy feat considering it’s weight), it’s important to contrast the start of my day with what someone with ALS truly has to deal with from the moment they wake up.
I woke up, got out of bed, showered and shaved, got dressed, walked down the stairs, and ate breakfast. I then walked down another flight of stairs to the garage, and wheeled a 40+ pound wheelchair up a 30 degree grade before lifting it up and placing it in the trunk of my car.
A person with ALS, upon awakening, may need assistance getting their blanket off their body, their bipap mask off their head, and assistance getting out of bed. Once upright, a person with ALS may need help getting on a scooter to potentially make a trip to a nearby bathroom, where once again, may need help getting on and off a toilet. Apparently, as I have just researched, one can “pimp” their bathrooms to make matters more dignified and easier, but still…
A person with ALS may need help showering, shaving, getting dressed, eating food, and getting into a car. And there’s no way someone with ALS is navigating flights of stairs inside or outside the house.
So before I even started my #whatwouldyougive challenge, I was already skirting around many of the challenges people with ALS face before they ever leave the house.
When I reached the North Berkeley BART station, I strategically parked right near the elevator. I had to walk back to the main entrance of the BART to pay for parking first, before making my way back to my car and the elevator (see my prior blog on this logistical challenge).
Once I got the wheelchair set up, and I sat down to get started, I quickly realized that the “curb ramp” was actually nowhere near where I parked. So I had to wheel myself over to a different section of the parking lot just to get up onto the sidewalk.
As I started to rotate my arms to move myself in the chair, I quickly realized that:
(a) it's not as easy to move as I thought it might be
(b) I can’t move very fast
(c) my hands are going to get blistered
(d) minor grades, inclines, and bumps in the road add extra challenges
(e) all of the above and then some
But I managed to wheel over to the elevator where I found myself side-by-side with a woman on a scooter who had no arms and no legs (I am not sure how she was steering it.)
After enduring the potpourri of the elevator, I was down on the platform. And while I'm on this same platform on most mornings, seeing it from this angle, where everyone else seems to hovering over me, was quite humbling. I felt vulnerable and different. A strange sort of "view from below."
I wheeled myself over to where I knew the “handicap” BART train would be, and waited for the San Francisco bound train. Normally I would get on a Fremont train if it arrived first, (which it did), but I didn’t want to have to deal with getting off the train and making the transfer.
One of my biggest concerns with riding the BART was “minding the gap” a.k.a. wheeling myself over the gap between the platform and the train itself. I am not sure how wide the gap is (maybe 3-4 inches) and I wasn’t sure how easy it would be to clear it.
As I am doing research now after the fact, BART’s “Wheelchair” page states, “Pay special attention to the gap between the platform edge and the train. This gap may vary, so don’t hesitate to move to another car if the gap at a particular door is too great.”
So if the gap is too wide, how quickly can one get to another car that may or may not have a narrower gap? Hmmm...
When the train arrived and the door opened, I pretended like I had done this before and confidently, and somewhat aggressively, wheeled myself over the gap. A roll of faith!
I made it on with ease and dexterity.
The car was moderately crowded, but people cleared right away from the handicap section and allowed me to get myself “parked” in place. Having never been in a wheelchair on a BART, I was not sure if the wheel locks would hold.
And as the train started to move, for a moment I felt weightless in the chair. My heart started racing, not knowing if the chair would roll backward, or if I’d fall out of it altogether.
But nothing happened. The chair didn’t budge. So I got to work posting photos on Facebook and enjoying my unique ride in. No one paid much attention to me. I was just another commuter on my way in to work.
Normally when I arrive at the Embarcadero station, I make a right turn and head up two long flights of stairs, 99 steps altogether, to get to street level.
Today, I made a left turn and was “swimming upstream” through people to get to the elevators. Once there, I shared the elevator with a couple of cyclists, with very little room to spare or maneuver inside.
After enjoying the familiar public transport elevator aroma again, I got up to the ticket level of the station. There, I had to “transfer” to another elevator to get to street level.
More cyclists and more eau de urine in this last elevator leg. The elevator leaves you on the northwest corner of Main and Market, which, while only 2/10ths of a mile away from my office, is still 2 full blocks and across the street from where I normally get off the BART.
My first challenge was going to be getting myself across the street. Even on foot, one is hard-pressed to get across the street within the 15 seconds or less that the crosswalk remains green (white).
I booked it along and made it across to the curb ramp, but not before the signal turned red. And you’d be surprised how hard you have to push yourself up the ramp to clear it!
From there, I started wheeling myself down the sidewalk, sometimes veering off to the right when the sidewalk seemed to be on a slant toward the street. Once again, I felt like a fish swimming upstream as I watched passersby continue onward at greater speed.
Before rolling to the office and heading to work, I had a “coffee date” set up with my former boss Suzanne at Blue Shield. We hadn’t seen each other since I left last February, and we were set to meet at the Starbucks on Market between Beale and Fremont at 8:00am.
As I wheeled through the Starbucks door and past the long line, I saw Suzanne standing on the coffee pick up line. I wheeled over, reached up, and tapped her on the arm and said “Hey!”
Suzanne turned around, looked down, and immediately let out, “What the hell happened to you?!!!” Spoiler alert: There was a bit of that going on all morning at work as well.
After explaining the fundraiser to her, and catching up on some gossip at work (Blue Shield), it was time to make my way to my team meeting at 50 Fremont by 8:30am.
I crossed over Fremont Street and started wheeling myself on the northwest side of the sidewalk. Again, the sidewalk is sloped toward the street and I found myself having to try to compensate by wheeling away from the street. By the time I got to the entrance of 50 Fremont, my arms were pretty tired and I was sweating!
Without going into too much detail about whether or not the front entrance to 50 Fremont is ADA compliant (the building says it is - but there is no button that automatically opens the door), two anonymous Salesforce colleagues saw me coming and held both large doors open for me, making it quite easy for me to get in.
The lobby and elevator banks are all very wide at 50 Fremont, so they were no trouble to navigate. Our meeting was on the 6th floor. Every floor at 50 Fremont has card readers that require you to badge in before the door will open.
I could reach the badge reader, but once the door unlocks, there was just no way I would be able to open it on my own. It’s too heavy and has a spring that makes it close after you leave. Fortunately, two more co-workers held the door open for me, and I wheeled myself over to the room where our team meeting was taking place.
Although I had told our VP Angela that I would be coming to work in a wheelchair, it had been awhile since we talked about it. So she, and the others in the room, were in a bit of shock when I wheeled in. More "what happened" sentiments.
That shock quickly dissipated when I reminded them of my participation in the fundraiser. Interestingly enough, one of my colleagues said she was more shocked that I was wearing a t-shirt to work than anything else. (I wore my Salesforce “1 Million Hours Volunteered" t-shirt.)
Once I got myself situated at the table, it was pretty much business as usual for our staff meeting. When everyone was sitting around a table at the same level, it felt more "normal" to be in the wheelchair.
At the conclusion of our staff meeting, I asked my team to take a group #whatwouldyougive photo, and then made my way back to the elevators to head down to the 5th floor to my desk where I would continue the day...
To be continued…