Van Go

Our mobility is dependent on our wheelchair accessible van. It is not the most stylish ride in the world, but it gives Maggie and I the freedom to get out and explore the city and beyond.

We've had this car exactly five years, we got it around the 4th of July in 2008. It is a 2005 model but has very low miles, like 65,000. We are out and about all the time, but we don't go very far. Other than brakes, which we replace frequently, we really haven't had any trouble. The car has a lot of life left on it.

For the past six months, the automatic door locks on the van have not been working. I could still lock the van manually but the automatic switch in the car and on the key were no longer functional. My neighborhood mechanic, who I trust completely, said it had to go to the dealer for that. It was just not worth the trouble and inconvenience for only that so I never got around to it. Lately I've been hearing noises. I took it back to my neighborhood guy and again he told me to get it checked at the dealer because the noise was coming from the engine. Ok, time to bite the bullet.

I was going to Los Angeles on Friday and returning Saturday afternoon so it was a perfect time to leave the car. Of course they didn't even get to it until yesterday (Monday) so we were kind of stuck without the van over the weekend. Great weather meant a long walk in the park on Sunday so that was ok. Actually it was great.

Yesterday I heard from the dealer about the estimate to fix the numerous things he found wrong. I was prepared for him to give me a high bid, perhaps in the neighborhood of $2,000. Turns out I was less than half right. The estimate was in the neighborhood of $5,500, not including the new front tires that I should get immediately.

As they scraped me off the floor I heard the guy tell me that it was an old car, even though it had low miles it is wearing out. According to him it is either fix it or replace it. My head was spinning until he said, "You know ma'am this vehicle is equipped for a wheelchair and they are very expensive to replace."  I responded with irritation, "yeah, I'm living the life, you don't have to explain that to me."

Everything changed when he said that. Any inclination I had to trust him evaporated right on the spot.  Did he think I didn't know there was a wheelchair lift in the back of my car? Did he think I knew nothing? Did he think I was just going to fork over $5500 for repairs that I now doubt we need?

My doubt only increased when I picked up the car. He drove it to the customer area and said with concern, "you know there's also a high pitched whistle when you turn on the ignition." I smiled sweetly and told him that was the alarm telling you the wheelchair wasn't locked into place. The guy knew nothing about my car.

I drove the car home and despite all its leaks and squeaks, it runs fine. I paid about $200 for the thorough check and the computer repair of the door locks and brought her home. Today I am going back to my trusted mechanic to see how much of the findings are accurate and whether they need to be addressed with the huge fixes the dealer recommends. My bet is that it does need work, but the total will be less than half of that estimate.

Maggie and I will be back on the road before you know it.

Finding Joy, however fleeting

This morning we went to the playground. Maggie loves to go to the playground, even though she cannot really join in on the activities. She loves to watch the kids running back and forth and listen to the squeals of the little kids. Today was even better because we went with a couple of other kids who would run and squeal and then come back to Maggie to see what she was sayingand interact with her. Maggie was in her glory.

We headed to what Eddie used to call "The Big Park," which is the children's playground in Golden Gate Park. It really is "The Big Park" compared to neighborhood playgrounds. It is huge. This park was redone about seven or eight years ago and it is even better than before. There are lots of those engineered soft surfaces instead of sand and Maggie's wheelchair can go to more places. (There is still sand in some places, just not as much). There are climbing sculptures like this one that we decided was a crashing wave. I used to think it was the spine of a buried dinosaur, but the wave makes more sense.

There is one adapted swing for disabled kids or for kids who are afraid of the regular swing, I guess. It's a seat with a back instead of a sling type seat. We asked Maggie if she wanted to try and she said yes, so we lifted her into the seat. At first she did not like it.Maggie  has little or no control of her trunk or head and really needs to be strapped in to stay upright. The seat had no straps and you could tell from Maggie's face that it was scaring her. We had to stop her from falling over several times, before we got her balanced.

Once we got her centered correctly and she knew there was a hand on her, she felt safer and actually started to enjoy herself.  It didn't last long, but it was worth it. We have learned to push through the hesitation and fear to get to the joy, even if it's fleeting.

Fleeting Joy is definitely better than no joy.

Greetings and Salutations

I had a meeting at UCSF last night. It’s only about ½ mile from here as the crow flies. It is three times longer than that to drive because you have to get across Golden Gate Park and the route is circuitous. Despite that I drove. The meeting does not get out until after dark, and it is not a walk you take at night. The park has some strange characters. The vast majority of these characters are harmless, but it only takes one.

As I drove home, I was thinking about one of the park characters from the past. We called him the Waving Guy. Every day for well over a year this guy stood at a little cut out above the Arguello Gate in the park and waved. He waved at every car, truck, stroller or wheelchair that went by. There is not a lot of traffic but there is a steady stream of vehicles as that is one of the few automobile access points across the park. He stood up and just waved all day every day. Until he disappeared, he was there every daylight hour. If it was raining, he wore a bright yellow slicker with the matching hat and boots and stood under a colorful umbrella. One hand was always free to wave.

He did not start waving as vehicles or people approached. He never stopped. At least that’s what it seemed, we were never sure. The waving was always in motion and the tempo was always the same. He would sometimes smile when people waved back, but not always, and he never disrupted his motions. I presumed it was some sort of performance art. If not, there was some serious mental illness going on. Whatever his purpose or motivation, he entertained us for months.

The year or so that the waving guy was at his post was a bad health year for Maggie. She was in and out of the hospital. The hospital is an enormous structure at the top of the hill just south of the park. My house is in the flats just north of the park. Maggie was in intensive are on the 6th floor and I was staring out the window trying to figure out if I could see my house. It’s not possible because my house is on the first block after the park. Both the hills and the trees from the park block the view of my street. I was trying to figure out how close I could see using landmarks to mark corners etc. (You find ways to entertain yourself during long stays in the hospital)

As I stared, I could see rhythmic movement in the trees and could not figure out exactly where or what it was. It took me quite a while to figure out. Eventually a smile crossed my face as I realized it was the Waving Guy. When the boys and Steve come up later in the day to visit Maggie and me I had each of them look and try to figure out what the motion was. (One of them got it right away.) All of us were hugely entertained by that. In addition, we figured out that he really never did stop waving.

One day he was gone and we haven't seen him since. I still think of him almost every time I pass that spot, and that's almost every day. As I passed his old post last night, I wondered what happened to him. He was probably in his 30s then and looked in reasonable health. I hope he is waving at some other spot now and continuing to delight people as much as he delighted us.

Funny how people touch our lives without ever knowing it.

Sunday in the Park

It is freezing back east. It is freezing up north. It is 70 degrees and beautiful in San Francisco. I know I know; we need rain. But it’s January 18, and it is a beautiful Sunday. We went to Golden Gate Park for a walk and a trip to the museum.

Maggie LOVES the museum. We give her the choice of the brand spanking new California Academy of Sciences with its fantastic Aquarium and its cool rain forest and albino alligator, but…nope. She always chooses the deYoung Museum. The two facilities are about 50 yards apart and both about five blocks from here. We are members of both places so it is just as easy to do one as the other. I think the huge crowds at the Academy of Sciences are a bit much for Maggie. In addition, it may be too visually stimulating with the fish tunnel and the eel cave. The museum is also crowded, but there are far fewer children running around. The museum is more sedate and cultured, just like Maggie (HA!)

To do the museum properly, you have to approach a piece of art, read the title and the author to here and then tilt her chair back a few inches and let it fall back into place. This is serious fun. She probably knows more of the artists than I do, because she listens carefully for the end when she gets a little “tippy” ride in her chair. Then she laughs her head off until we get to the next work of art. At first, other people do not know how to react, but after three or four paintings, they are cracking up too.

Walking over there and back is also entertaining. The best part of all is the area off 6th avenue where there are roller skaters and people on trick bikes. There is music blaring from a large sound system that is set up in a jogging stroller. (The skaters bring it in on their skates). There are usually about 100 people standing around watching another 20 or so do tricks, speed around and just have fun. The mix of people is hilarious. There are some families with little kids and teenagers, but it is mostly adults doing amazing feats on their skates or bikes. You will see a 40-year-old guy zoom past a four year old. There is never a collision, but I’m not sure why not. It is not a roller rink, per se, but it has evolved into a de facto skating area.

We have to walk right through there but it is never a problem. Folks zoom right by Maggie and wave at her in her chair. She laughs through the whole thing. Here she is with dad just after negotiating our way through.

Today was especially festive, and it was not just the weather. People are in a good mood and excited. The music was “Celebrate” and it was interspersed with Obama’s voice saying this is OUR TIME. It was amazing. Little kids are dancing, dogs are running around, and people are laughing and skating and riding and having fun. The energy was great.

As I said, I know we need rain, but I am glad it wasn’t today.