Ride on

Today I have an appointment to renew my eligibility to use paratransit services with the local public transit service (Mass Bay Transportation Authority, or MBTA, or just “T” if you’re into the whole brevity thing). The Ride is what the T calls their poorly run, badly funded service. The last two governors of MA have chipped away at its usefulness for residents, adding in hoops (like the in person re-evaluations), increasing costs per ride, and leaving a corroding infrastructure and administration in place. My aunt, who has taken it on and off for many years, says that she feels it got much worse a few years ago and has never improved since.

Redline
Colored pencil and pen drawing of a Red Line MBTA train. Train car is red with a big black “T” in a white circle. It speeds by on small pink and black wheels and has two large windows. In the first window, a stressed out, tall red-haired person is saying “THINGS!”, a smaller dark haired person to his right gives him a “side eye”. 2nd window shows a blond woman with a huge mouth on a cell phone yelling “OMG!”. A person with a redsox hat sits next to her looking down at their phone. Credit: me and my (then) 8 year old niece. 

About The Ride

How does The Ride suck? In so many ways. Rides are usually shared. That’s ok, except whatever software they use to map out the trips to maximize riders apparently sucks a lot. A trip to a doctor’s office that’s about 10 miles away, not at rush hour, took close to 2 hours. The vehicles are old and have less than sufficient heating and cooling (“the air conditioner turns off when the van is idling,” was what they told me when I called to let them know the ride I took one summer day left me sick from the heat. I explained that part of why I can’t take the T is because of temperature control issues, that I can get so overheated in “normal” heat that I could get heatstroke. Oh well. That’s just the way it is, was the response). The dispatchers…they are terrible. I actually haven’t used The Ride since one of them was so verbally abusive to me during scheduling.

See, the way it works is that you call several days in advance and set up your times. You tell them something like “I need to be at Dr. X’s office by 10:30 AM on Wednesday and I will need to be picked up from Dr. X’s office to go to Dr. Y by 3:00 PM”. Then you wait for them to call you, often rather late the day before, to tell you the times they have determined they will pick you up for your trip out and pick you up again for your trip home (or in my case, pick you up for your first appointment, pick you up for your second appointment, and pick you up again at the end of the day to go home). The Ride is allowed to reschedule you up to 30 minutes earlier or later than your “requested” times. And it turns out that they can’t handle more than one single round trip in a day. My request to go to two doctor’s appointments caused them so much trouble, it turns out.

If I remember right, they scheduled me very early for my first appointment; rather late for my pick up to get to my second appointment; and they scheduled my last pick up, to go home after this fun filled day of  doctors appointments, super late. I think it was going to put me at 10 hours out, which I never ever do these days, because hey, fatigue, nausea, the need to eat 6 small “meals” a day, most of which need to be refrigerated (no eating or drinking on The Ride), my frequent need to use the rest room (no potty stops on The Ride even though you’re guaranteed to be on the van for at least an hour). Also, this would be a ten hour day that would include at least 3 hours on a rickety, smelly, hot van where the seats are so high that I can’t brace myself to stop from rattling around in my seat like a marble in a bucket as we crash down the notoriously shitty Boston streets. This would not end well, I thought. So I called dispatch to try to reschedule some of this day of horrors. The Ride passenger agreement says that the passenger is allowed to call dispatch the night before their ride if they need to try to negotiate a better pickup time. Well, you are entitled to call, but apparently they are entitled to verbally abuse you for it. I caught nine kinds of shit from the person on the other end of the phone, and I haven’t used The Ride since.

Qualifying to use The Ride, Part 1

I qualified to use The Ride in August 2014. I was sick then, but I’m worse off now. Back then, The Ride had just started requiring riders to come to a physical location to be evaluated by staff regarding their abilities. (You can read a news story about this here, where they point out that the evaluators have no medical training). I remember wondering before my first appointment who these people were, how they were trained. Would they make sure I was safe? When I tried to get information about the details of the eligibility determination process, I encountered a great deal of opacity. They might make me walk outside, stand at a bus stop, go for a ride on the T with them so they can observe me. None of which was going to be ok for me in August in Boston.

None of that happened. I was in a cubicle filled office space with a few sparse enclosed offices in the walls around the room. In one of those offices, I spoke with a woman, whose qualifications to make medical/occupational health type determinations was never made explicitly clear to me but who did not seem to understand basic medical terms like “orthostatic hypotension” and “syncope”. She had me walk a little bit, out in the cubicle area. She took me to a chair off to the side and had me sit and then stand. While I stood, she said she was going to “push” me on my chest (sternum area, just under the collar bone). She gave me several thumps in the chest, the first being just a tap, the last being something that approached a hit – none of them even close to the kind of force you’d encounter riding the T when the train comes to an abrupt stop or when a fellow rider crashes into you.

Qualifying to use The Ride, Part 2

It’s been 3 years since that evaluation. Within the last 2 years, my health has really picked up in its decline. I now have new (well, it was new in Spring 2016) muscle weakness. No, we (my many doctors and I) don’t know why. We know it shows up on a special kind of EMG as “mild myasthenia”. That plus the already existing joint laxity means I am very easily hurt now. One would be excused for assuming that taps in the chest are probably not the best idea right now.

It’s been 3 years since that evaluation. Within the last 2 years, my health has really picked up in its decline. I now have new (well, it was new in Spring 2016) muscle weakness. No, we (my many doctors and I) don’t know why. We know it shows up on a special kind of EMG as “mild myasthenia”. That plus the already existing joint laxity means I am very easily hurt now. One would be excused for assuming that taps in the chest are probably not the best idea right now[1].

Every time I seek medical care for a skeletomuscular complaint, my insurance company investigates the claim for any whiff of third party responsibility. Although they get plenty (!) of bills on me that have diagnostic codes for Ehlers-Danlos Syndrome, it seems they can’t wrap their heads around the practical implications of hypermobility. They are just sure that one of these injuries is due to something other than me just trying to wash my shoulders in my shower or cook food in my kitchen. And they are also sure that I’ve sued whoever was responsible and apparently am now sitting on a huge pile of cash. You know, like you do. Therefore, they believe, some of my supposed huge pile of cash should be used to cover treatment of my injuries. They are so sure of the likelihood of this scenario that even when I reply to their questionnaires about my injuries telling them no one else did this to me but me, and reminding them that I have EDS and what that means, they have rescinded payment to providers many many months after the fact. They just can’t believe that I get hurt like this without someone else being to blame (we can chat about the ethics of Blue Cross Blue Shield MA’s subrogation efforts in another post… for now let’s just leave it as something that is at least questionable in practice if not in actual intent).

All this is leaving me wondering if today I will need to give the The Ride evaluator a lecture about subrogation and whether it would actually be valid should the The RIde evaluator decide to poke me, shake me, rock me, or otherwise perturb my always fragile physical equilibrium in order to prove that I’m disabled enough to use a service that I’m actually often too disabled to use.

[video: still photo of album cover by Parliament, Chocolate City shows throughout video as “Ride On” plays]
“Ride On” lyrics:
Ooh, doin’ the ride on
Uhh, uhh, doin’ the ride on
Put a hump in your back
Shake your sacroiliac
And ride on
Let’s take a ride
Ride on
Baby do the ride on
Mama do the ride on
Ride on
(x2)
Doin’ the ride on
Ooh, oww doin’ the ride on
Ride on
Baby do the ride on
Mama do the ride on
Ride on
(x2)
It ain’t what you know, it’s what you feel
Don’t worry about being right, just be for real
We’re gonna do it to the max, when we do it
We’re gonna do it, do it good, when we do it
Put a hump in your back
Shake your sacroiliac
And ride on
Let’s take a ride
Ride on
Baby do the ride on
Mama do the ride on
Ride on
It ain’t what you know, it’s what you feel
Don’t worry about being right, just be for real
We’re gonna do it to the max, when we do it
We’re gonna do it, do it good, when we do it
Put a hump in your back
Shake your sacroiliac
And ride on
Let’s take a ride
Ride on
Baby do the ride on
Mama do the ride on
Ride on
(x2)
Ride on (put a hump in your back)
Baby do the ride on (shake your sacroiliac)
Mama do the ride on (let’s take a ride)
Ride on
Ride on (It ain’t what ya know)
Baby do the ride on (it’s what ya feel)
Mama do the ride on (Don’t worry about being right just be for real)
Ride on
Ride on
Baby do the ride on
Mama do the ride on
Ride on
(x3)

[1] Two weeks ago, I injured myself so badly just showering that I had to spend the next two days half laying/half sitting and not able to take a deep breath without holding my left arm over my head. Since then, I’ve had a lingering deep pain in my chest and shoulder.

Before that, I had moved badly doing….I don’t know, something small. I think I turned my head at a bad time, and hurt my the right side of my neck. All painful, all the time. No lifting, no moving the arm. No turning my head.

I routinely step wrong and throw out something in my pelvis that hurts so bad I saw spots and gag.

In January, I tried PT again. On the way home, the upper abdominal pain started. I spent the next four hours in bed with crushing chest and abdomen pain. (PSA: normal healthy people, if you ever have pain like that, please go to the ER – I don’t because I decided at the time that I was ok taking the risk that it was cardiac, with the prior probability suggesting it wasn’t. It was a risk though, and one that I’m not sure I’d take again if it happened again).

In October, I stood for too long making food at home. Standing too long means shuffling my feet and wiggling my legs, to try to pump the blood back up into my body (on account of the pooling that goes with EDS and results in the hypotension and cerebral hypoperfusion, which makes me clumsy, which means I’m not moving well). I started having pelvic pain around 7 PM that night, sat down for a while with hot packs and advil, and then went to bed still in pain but hopeful it would go away. Instead, I ended up in the ER after waking up in the middle of the night in agony.

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