Planet Laura Blows Up: The Stolen Road to Eli Clare

Posted in honor of National Disability Awareness Month.

In my mind, it was going to be so wonderful. It was a singularly gorgeous Autumn day in Chicago. Eli Clare, whose poetry I deeply respect, was presenting downtown and Michael was free to go with me. We would get an early start and, for the first time in 18 years of friendship, hang out together in the city, like people do sometimes on a perfect afternoon. Away from work. Away from family drama. Just a day off with my bud.

We were going to be very close to one of my favorite restaurants. A great French bistro where I could even get my beloved Chartreuse, monk style, (in green OR yellow, mind you).  A nice relaxed excellent dinner downtown. Away from all the cares of the day. I wanted that just once and he was up for the trip.

In my mind, I just didn't realize, even as aware as I am, just what a trip to the city means when you have quadriplegia.

**Warning, this is a long post and every bit is true. And keep in mind, we had less than 20 miles to get to our destination.

When we were in the planning stages of the trip, I posed the question to Michael: Eat near his home so I can get him in his standing frame before the trip, risking getting stuck in crazy traffic since the talk was at 6:30 or go downtown mid afternoon to avoid the rush and have a nice dinner first there in which case he doesn't stand and may end up with some good pain spikes as a result?

"Hey, good thinking! We can take my frame in the van and you can stand me up in a parking lot downtown. That what we do on trips. You'll be able to do it, you are a quick study."

He has such faith in my ability to manage what he needs that I don't even gulp anymore. I haven't dropped him so far. He's been giving me on the job training since the first time we met.

I met him at his office and saw that his standing frame was behind the driver's seat. It's an ingenious contraption made by his father with a rimmed platform at the bottom to hold his feet, a padded brace to stabilize his knees and a bar on either side that hooks to a belt you strap under his hips to pull him up with a electric pulley system. It stands probably 4 feet tall, probably as wide and maybe a couple feet deep. It was on wheels and secured with bungee cords behind him so it would have to be removed for him to exit the van.

Eyeing the bungees and sneaking out an inner half-gulp I ask, "Okay, what do I do here?"

"Study it. You'll just have to see what my helper did and do that. Don't worry, just take your time."

Remember, he had to go in first, and his neck is fused so he couldn't turn around to peak at the set up. He had no idea how it was secured.   

I memorized the bungee pattern, freed the frame and wheeled it down the ramp, so he could get out. Then I removed the passenger seat, locking it into the driver's seat area so I could drive and we went in to do a little work before leaving at 3:30. That should have given us plenty of time to travel the 19 miles downtown with time for dinner before the 6:30 gig. In fact, if it all goes well, I thought, we could even fit in dessert and tea with michael munson from FORGE who told me about the gig. He was coming down from Milwaukee and I really wanted to introduce the m/Michaels to each other.

But that is only if you live on Planet Laura. 

Here's what really happened.  Traffic was so backed up on the highway that even taking local streets a good way to bypass much of it, we still ended up sitting on I-90 only to arrive downtown nearly an hour and a half-later.

I glanced at the clock. 4:50. Okay, we should be parked by 5:00 and can still enjoy dinner. I had been up since 3:30 and was needing a second wind but so far, so good.

Access Living, a non-residential independent living center for people with all types of disabilities, was the host site for Eli. Access Living, ironically, has no parking.  I spied a private lot very close and we pull in.

Baffling Realization #1: Private lots don't have handicapped parking spots. They want profit, and double sized spaces cut into that.

"Can we park here?  We need to extend a ramp."

Dubious look but willing to consider it, the attendant consults the guy in charge.

"We can put you at the end. But how long will you be here?"

"We're at a talk until 8:30."

"Oh, no. This lot is a valet lot for a restaurant after 7:30. You can't be here that long." He gave me a lead on the next closest parking lot. A private parking garage a few blocks away that he thought had handicapped spaces.

We find the garage and pull in. Big sign: Valet parking only.

We can't have a valet park this van. Hand controls, a myriad of buttons and knobs. Too much that could go wrong if someone doesn't know what they are doing. I explain this to the valet.

Dubious look, followed by consultation with the guy in charge (this is standard operating procedure).

They direct me to a place I can pull the van into but it is going to be too tight a squeeze. They stop me before I scrape a support beam and direct me down a level to a corner spot. Still not a handicapped space but the space beside is open so we go for it.  I'm half way to getting the ramp door open when I see an attendant waving at me like crazy across the garage. Apparently there is a problem. I grab the key from the ignition and get out the driver's side to go see what's up.

Baffling Realization #2: They don't have an elevator. Sure we could park there but Michael would have to take his chair up the VERY steep car ramp to get out to the street. Too dangerous. (And by the way, were we planning to eat at Gino's because this lot was only for Gino's anyway. Didn't see that posted anywhere, making me wonder if this excuse, which we now had twice, was another standard operating procedure to get handicapped vehicles to go away.)

This is a Baffling Realization because even in parking garages that DO have an elevator, sometimes the elevator isn't accessible.   I learned that this summer when we went to the Hilton for the Blackhawks Convention. Michael had to go down the steep car ramp to get to the elevator. And yes, we did come face to face with a car and a mortified driver who had not expected us. Would you have?

I get back in the van and put the key in the ignition. 

It won't turn.  At all.

I look at Michael. "Did I accidentally hit something? What do I need to do? The key won't turn." I thought maybe there was some mechanism in the van that was preventing me that I wasn't aware of.

"Is it in all the way? Take your time."

I've started many cars. The key was in all the way.  I wasn't rushing.  It really would not turn.

I had bent it when I removed it.  It has an adaptive attachment so Michael can use it but with the torque an able-bodied person can exert, the attachment should be avoided. I hadn't grabbed the key itself and now the key was damaged.  We were in the lower level of a dark city garage with no elevator and I had a small band of upset valets gathering at the end of the lot wondering why I hadn't left yet. I'm tired. I'm hungry. Somehow I resist the urge to cry.

Michael is amazingly calm. "Check my satchel. I think there is a spare key in there."

There is a God.  I grabbed the spare key and we got back out to look for lot #3.

The next lot was on the street but not too full. What the heck, let's try it. 

Franco, the attendant, could not have been nicer. Still no handicapped spots but he gave us a spot next to the port-a-potty and dumpster, directing me so that I was overlapping 2 spaces so we wouldn't get boxed in.  I extended the ramp and started to remove the standing frame.

France asks what I'm doing.  I try to explain that we have a whole "procedure" we have to go through to get Michael out.  Dubious look but he foregoes the consultation.

Out comes the ramp, out comes Michael.  We probably need to get him standing now.

"See that transformer box under the seat? That's going to be our power source. You have to pop the hood and attach the cables to the battery."

Okay, time for a sexist stereotype.  I am a 45 year old woman. Any time I have been in a car jumping situation, there has always been a man there doing the jumper cable part.  I'm just happy I can figure out how to pop the hood.

Now Franco is really wondering what's up.  Are we having car trouble?

We explain the situation and he steps in and hooks up the red while I take the black cable. Bless him. I half expected him to turn us away, fearing some liability if there was any mishap. More than half expected that.

Now for the frame. Wheel it against the van so it won't roll away since the wheels don't lock. Remove the leg rests and put Michael's feet in the box. Check. Hold his knees together as he moves forward to secure them against the brace. Check. Remove the arm rest and wriggle the belt under his butt. Check. Plug the frame's cord into the transformer box and hit the toggle to get the lifting arms down to attach to the belt.  Ch....

No juice.  The transformer is out of commission.  The wheelchair is half dismantled across the parking lot and he's all ready to go and we've got nothin'. 

I check the connections. I start the van. I rehook and unhook and nothing. 

"Ask Franco if there is another outlet somewhere maybe?"

I head off to Franco and he shows me there is one in the guard stand but getting set up there is going to be another major event. He heads to the van with me to look at the transformer.  As he is playing with the cables the light starts to flicker. Apparently there is a little short in the cable but we have juice. I start the van to help it along.

Michael stands for several minutes and then I do the reverse commute. Get him down, remove the belt, put back the arm rest, legs back on the rests, transformer box unhooked, frame back in the van. It is 6:20, almost 3 hours since we left his place. The talk is at 6:30.  I seriously need to eat.

Michael weaves his way down the sidewalk, trying to avoid as many of the bone jostling bumps as he can. I had never realized how uneven city sidewalks can be. On Planet Laura, sidewalks are very, very smooth. I thank him for being so calm during the trip and for not taking out any stress on me. Never once did he snap or direct the least tension my way.

"Why would I take something out on you? This is a normal day for me. Come on, let's get you some food."

We decide to grab a quick bite at Cafe Iberico, right around the corner from Access Living. PACKED and noisy. Not exactly the relaxed French dinner with chartreuse I had envisioned but it's the only game in town.  The goat cheese tapa was wonderful as was the mojito. I try to settle in. I'm tired but thankful I got food in time to avoid the hypoglycemic meltdown anger-thingy that looks so good on me. I leave messages for michael m and Erin who also was hoping to go to tell them we're near but running late.

We get into Eli's talk about 7:00.  Nice to be in a room where you don't get the "my, my, a wheelchair, gosh, welllll..." dubious look and consultation. The person at the door helps us find a spot to sit without disrupting everyone.

I spy Erin and michael seated next to each other, just ahead. "Oh good!" I thought, they found each other. I found out later it was completely accidental that they sat next to each other. They had never met. Such is the power of my blog...my readers become psychic magnets for each other in crowded rooms. (Hey, I take credit where I can. Give me that, at least. It was a rough day.)

Eli's talk "Gaping, Gawking, Staring" focused on issues of what is stolen and what must be reclaimed by those with disabilities or other issues that set them apart from "normal" society, whether it be race, gender, body size...whatever has become an object of scorn or stigma in our culture.  Compelling thought and commentary and then a break for us to discuss with a partner what we felt had been stolen or reclaimed for us.

I asked Michael a few questions and he indicated that he doesn't feel so much like things have been stolen from him at this point. Earlier in his life, he certainly felt that way but it isn't a strong feeling for him now. Even his last surgery, which decreased his function considerably, also gave him the last 4 years of life. He was not ready to die at that time and willingly underwent the surgery to prolong his life.

Being able-bodied, I have to confess, I thought this talk was for "them", you know, the people who have to deal with crap day in and day out because of disabilities or differences. I was just there as a fan of Eli's but this really wasn't about me, right?

So when I found myself the next day, breaking into little weeping jags every time I turned around, it kind of took me by surprise until I sat down and wrote about it.

It seems like a small thing, that I didn't get my dinner or my chartreuse. But will we get another chance? Cold weather is coming and I can't risk going through this with him in the winter. It took 18 years just to get this chance.

It seems like a small thing that we didn't get tea with michael m. because I did get some great hugs from him (he's an extremely huggable cuddle bear of a guy) and we'll see each other again, I am sure. But will Michael be able to see him again? I so want them to have a chance to talk.

It seems like a small thing that we missed 25 minutes of a 2 hour presentation when we will be able to hear it on the NPR site. But I wanted to be in the room to hear that; be in Eli's presence, which is so powerful. I wanted to be there from the start with all my people, peacefully settled in and let it all wash over me, not listen to it by myself on my computer.

In the end, those weren't the most important things that were stolen from me. What was stolen from me was Planet Laura where a parking lot attendant would see a woman with a man in a wheelchair and give them a place to park so that all of the rest would have been possible. 

Now THAT seems like a small thing.

*****************************

If you want to do something nice for Michael "HEY! I thought you said we were going out for Eclairs!" Schwass, (E. Clare, get it?) I have a few ways you can:

1. Enter the very cool drawing in which EVERY participant gets a gift, just for playing.
2. Make a purchase from the All Is Well Collection of fine art prints and cards at the NoSafeDistance Gallery. All proceeds go to Michael.
3. Purchase a copy of All is Well, a book of my contemplative photography which was originally created as a gift for Michael on his last birthday. Proceeds will go to him.
4. Sign up for my newsletter in the top right sidebar of this blog for exclusive offers and additional savings to give you back even more from any purchases you make on the above.
5. Make a straight Donation. I eat all the processing costs so 100% of your donation goes where you intend.
6. Purchase Michael's autobiography, Don't Blame the Game.
7. Digg, Stumble, give us a boost on your own blog, e-mail...whatever you can to help spread the word. Pass on the links to any and all of the above to anyone you think might appreciate his life, my work here or any of the offers above. 

Thank you!