An avoidable series of unfortunate events

Maggie's favorite outing is a trip to the Mall. And by the Mall, Maggie means Stonestown Galleria. Not target, not Union Square, not even Westfield Mall. She loves the familiarity of Stonestown. We basically walk the length of the mall upstairs and down and then come home. Maggie looks forward to this, in fact she starts telling me Friday afternoon and doesn't let up until we actually go sometime over the weekend. If we aren't going I let her know right away to avoid a meltdown but I promise her we will go the next week  We were so busy last weekend we never got to go, so the expectations for this weekend's trip were high.

Parking is always an adventure with Maggie, but we have pretty good luck in the underground parking lot at Stonestown. This time I actually checked around outside first. I was hoping to go to Trader Joe's and wanted to avoid carrying groceries and pushing the wheelchair back through the mall. There was nothing accessible outside, so we headed down to "our spot." The wheelchair spaces are in the back row behind the entrance to the elevator. Maggie and I always seem to get the same spot and yesterday was no exception. This mall trip was looking good.

I unloaded her from the car and put the ramp back. We walked around the elevators with a nice family with three little girls in soccer uniforms. They were shyly waving at Maggie and running ahead to get the door. That's when we saw this.

 The elevator was out of service. The mom of the little girls pointed to the other entrance, but I said "you guys go, but that's an escalator and it won't work for us." The mom looked stricken, the dad was aghast. The little girls were confused. Maggie was impatient. I was angry.

The dad said, "This is terrible. What are you going to do." I appreciated that he got how screwed up the situation was and said, "if it were up to me I would just go home, but I promised her, so I guess I'm walking up the auto ramp."

This happened to us once before and I did just turn around and leave. But I couldn't do that to Maggie. I looked around for any other elevator, but found nothing. I went into the gym that opens into the garage, but they did not have an elevator. Having no choice, I started pushing Maggie up the steep auto ramp. That loaded chair is well over 200 lbs and uphill is no small feat. The car behind me must have been irritated, though not nearly as much as I was, but to his credit,  he did not honk the horn or peal around us.

Once up the ramp, we are on the far side of the parking lot away from the entrance to the mall. I pushed her back across the parking lot and had to go way past the entrance to find a curb cut. We backtracked to the entrance where I found the security guard (Paul Blart, Mall Cop). I told him our predicament and for some reason he found it amusing. I did not share his viewpoint. He laughed when I told him I came up the auto ramp saying "Ohhh you were waaaay off." REALLY, Dude? Really? He directed me to another elevator near the mall offices. I figured maybe it was time to visit the mall offices. I did suggest to him that a sign downstairs would be very helpful to others in this situation.

We went into Macy's, took their elevator upstairs and started to head to the mall offices. Oops, can't go that way, there are stairs. I went around to the ramp on the other side and doubled back. Of course, it is Saturday and the offices were closed. Again, REALLY? There are probably 5000 people in that mall and the offices are closed. The sign said we could get 24 hour security help, but I had already dealt with security. In fact he was part of the reason I was there. At least I found the freight elevator the guy told me about.

We did our thing and made our way back to that elevator. When it opened on "B" I was trying to figure out where we were. I stepped out of the elevator and the doors closed behind us. Of course we were not in the garage at all, but behind the mall in another outside parking lot/freight area. I was further from my goal than ever. We waited at least 5 minutes for the elevator to return, went back to the main area of the mall to find Paul Blart, but he was nowhere to be found. I called the number for security and a woman started to direct me to those same elevators. I told her that would not work.

At this point I am getting more than impatient. I knew I could walk back down the auto ramp, but it is just too steep and I really really did not want to do that. I became (shall we say) insistent with her. She finally realized what I was saying and said, "Oh you need Freight elevator #5." Really? There are FIVE of them?

At her direction I went into the deepest bowels of the mall and eventually found Freight elevator # 5 and proceeded downstairs to the car. To my surprise, I was only about 20 yards from the broken elevator. How could I have missed it? Maybe it was the giant sign on the door that says DO NOT ENTER. AUTHORIZED PERSONNEL ONLY. How silly of me. Why wouldn't I assume that was the way we were supposed to go.  E X H A L E.

When I got home I went on the Mall's website to give them "feedback". I wrote an impassioned letter noting how often we visit Stonestown and if we didn't know our way around who would? I mentioned that a single sign directing people could have prevented the entire series of unfortunate events. I also suggested a little sensitivity training and perhaps some mall orientation for the laughing security guard who gave us incorrect information.

The feedback did not go through because their website was not working.  REALLY? Undeterred, i googled the name of the general manager of the mall and his email popped up. I sent my letter directly to him. That email came back undeliverable.  I'm starting to understand why things are so screwed up there. I gave up and wrote this.

 I cannot wait for Maggie to ask to go back to the Mall. After a lifetime of hanging out at that Mall, I think it might be time for a change. I'm just not sure how I will convince Maggie of this.

Mini adventures

One more full week until school starts! Both Maggie and I are ready for that because we both need the structure that the school year brings. To be honest, I need it more than Maggie does. I have had a very difficult time getting anything accomplished in the past month because I don't have my required stretches of uninterrupted time.

I spend a lot more time caring for and entertaining Maggie, both of which can be quite exhausting. To make matters worse, I get a lot less sleep. I can never sneak off to bed early because there is no nurse here in the evening. They come in the morning on the days I work and in the early afternoon on the days I don't. That leaves anywhere from 3 to 6 hours in the evening for me and Maggie to further bond.  I have deal with Maggie's needs, suctioning, feeding etc until the night nurse arrives. Maggie absolutely refuses to stay in her bed even with me in the room if Dad is in the front room.(or visa versa) Often all three of us Maggie, Steve and I, are sound asleep in various chairs in the front room when the night nurse gets there. By the time I give her report and get upstairs into bed I am wide awake from the interruption. Oh well, 10 more days. We can make it.

We are trying to continue our adventures though they are limited to a few days a week now. It's just too much to try to do more than that. Two days a week is plenty for her and more than plenty for me. We are limited to short jaunts because of Maggie's constant needs but we do live in a tourist mecca, so there is no shortage of things to do.

This week we went right into the belly of the beast and headed for Union Square to go shopping. We didn't buy anything - we almost ever do - but it is fun for Maggie to be part of the action. We went through several floors of Macys and other stores and then went over to watch the cable cars go by. Maggie thought those were hilarious.

 Thursday our friend Anne Marie was visiting (of the prom dress fame!) We headed to the Asian Art museum in Civic Center. I searched for an accessible parking spot for a while, but finally gave up and went underground to the Civic Center Garage. We went down two levels to find parking, unloaded Maggie, attached her pole and her dynavox and hooked up the switches. We put her shoes back on (she kicks them off constantly) and made out way to the elevator. There for the first tie we saw the sign that read "Elevators Closed. Please use stairs. Sorry for the inconvenience."

It took a minute to compute even though an overly helpful man was offering to help with the stairs. (absolutely impossible to carry Maggie and her wheelchair full of equipment up two flights of stairs. It's well over 200 lbs) I declined his kind offer and his request/demand for $5. We drove up one  level to ask for instructions on what to do.

I told the guy at the kiosk that I had a wheelchair and he said gruffly, well there's plenty of handicapped parking. Right, say I, but how do I get her out of the lot with the elevators out of order. "Take the stairs like everyone else." Really? again, we have a wheelchair. Why don't we just walk up the car ramp "No ma'am pedestrians are not allowed on the ramp." well dude, it's either the elevator or the ramp so you are just going to have to let us. (note this whole thing took at least 20 minutes for which I had to PAY) He relented.



I pushed her up the hill to the street level, but of course there was no cut out for the wheelchair and getting her onto the very high curb wasn't going to happen. We had to walk in traffic behind a line of parked cars to reach the corner where we could get back on the sidewalk.  I was exhausted by the time we reached the museum, which is visible behind us in the picture above.

 The girls enjoyed themselves and the museum was lovely and soothing and almost made it all worthwhile.

Almost.

Throughout the visit I was worrying about getting her back DOWN the hill. Up is not nearly as bad as down. Down is scary.  We made it without incident, though.

It really is too bad we only get to do these things twice a week.

Perking along

You too can enjoy the “perks” of the disabled!! All it takes is about $1300 and a complete lack of morals and grace. The parking is great too!

I read this  yesterday about a new “trend” among some of the more wealthy and vapid members of our society. It is all the rage among  a (hopefully) small group of parents to hire a disabled individual at a price of approximately $1300/day to act as tour guide in Disney theme parks. The disabled individual get the disabled access pass from Disneyland/World allowing the family to go to the front of the line and avoid the long waits that are part of the Disney experience.  One of the rich Manhattanites who used this service said, now the 1% can enjoy the "perks" that the disabled get.

Holy Mother of God. I don't know who is worse. The people hiring these guides or the guides pimping themselves out and threatening a program that is actually of benefit to the disabled visitors to Disney theme parks. 

We utilized it once and it was great, I'm not going to lie. I never even would have attempted Disneyland without it.  There is no way Maggie could wait for several hours to go on a ride, even though there are very few rides she could actually handle. She only went on the tamest of attractions because it is difficult to hold her and she cannot protect herself. Even the Pirates of the Caribbean was a little much for her.  My sons were initially excited at the possibility of going to the front of the line to use Space Mountain until I reminded them that Maggie does not have head control. I have a rule: no head control, no roller coasters. They enjoyed space mountain after waiting their turn in line. Maggie and I just strolled around for that hour or so. I'm such a mean mom. 

Even with the access we were allowed,  Maggie melted down in very short order. It was too much for her, as I knew it would be. Still I felt Maggie should get a trip to Disneyland just like every other kid.

The point is, of course, that Maggie is not like every other kid and needed some accommodation to experience the park at all. The disabled accommodation did not make me want to return. In fact, as we walked down Main Street toward the exit I said to Steve, "There. We did it. I'm not coming back here until I have grandchildren." That was about 10 years ago. And we haven't been back since. 

Today Maggie could probably handle it better, though she still would not be able to utilize many of the rides, and we would not be able to lift her on and off the ones that would work, so a return trip is not likely. If we were to even consider returning,  it would only be if Maggie could have to have the same accommodation. If people are taking advantage of Disney in this regard, that will probably disappear. 

Though it was great, and certainly the only reason I tried Disneyland  then or would consider it now, I would not refer to this accommodation as a "perk" of being disabled or having a disabled member of the family.  Learning how to suction and parallel park at the same time while in rush hour traffic?  Now THAT is a perk, but something that attempts to level the very steep playing field is just a kindness and its good business. Families of disabled individuals know there is one place they can go and the disabled individual in their family can have a sporting chance at fun. That brings many of them back again and again and again to spend those dollars saved from not having to pay parking meters.   

Kindness and sporting chances -- what amazing concepts. I hope these greedy/spoiled people don't ruin this kindness for the people who really need it. The bragging coldhearted woman needs to be slapped and someone needs to find this disabled tour guide and put him/her/them out of business. They should all do a little time in the Toon Town slammer.  

My boys and their cousin Pete did some time in the Toon Town Jail some years back. Straightened 'em right up.  

(This picture is probably 1993ish, definitely before Maggie was born. We probably had more fun on this trip without the passes than we did when we went with Maggie.  Just sayin...) 

Muni Madness

Maggie and her classmate were unable to board the L Taraval yesterday because the driver refused to move the streetcar a few feet so that the wheelchair ramp would line up with the door to the coach.  I just wrote this letter to the San Francisco Municipal Railway (Muni)   

Dear Muni:

I need to bring a matter to your attention. On April 3, 2013 two classes from Mission High School took a field trip to the San Francisco Zoo. These were special education students, several of whom use wheelchairs. My daughter Maggie is one of the wheelchair users.  The kids, teachers, aides and nurses boarded the J Church at Mission High and transferred to the L at the Church street station and then reversed the process coming home. This group uses Muni regularly and rarely has any issue. Unfortunately, yesterday was an exception.

Because of her medical conditions, my daughter had to return to school a bit earlier than the rest of the group to receive a needed medical procedure.  She and another student (also in a wheelchair) left with two aides and a nurse shortly before noon. 

The L Taraval was sitting empty at the terminus ready to be boarded.  However, the car was pulled beyond the ramp for the wheelchairs.  One of the aides talked to the driver and asked him to either back up a few feet so the kids could board in the front door or pull up a bit so they could board through the back door and make their way up to the seating area reserved for the disabled.  To their amazement, the driver refused to do so.  

Please understand, the coach was completely empty as that is the end/beginning of the line. The driver was waiting for several minutes to leave as is the custom at that particular place. There was no hurry, and  there was no inconvenience to any other passengers. Still, he refused to move the coach so as to allow my daughter or her classmate to board the streetcar.  This is inexcusable.

 Because they could not get the two wheelchairs onto the streetcar, they had to wait for the next one. That driver too had to wait several minutes before he took off. (I presume that is for the schedule – there are always cars sitting there waiting.)  The resulting unnecessary delay make my daughter late for her scheduled procedure and quite uncomfortable, something that could have been avoided if driver #1 had shown even the slightest courtesy or concern for the passengers.   

Interestingly, by the time the second car arrived a third wheelchair user had arrived. This person was not connected with my daughters group. Driver #2 originally told him he would have to wait for the next car as there wasn’t room for three wheelchairs. His companion and the school personnel easily made all three chairs fit and everyone rode without incident.

It seems some sensitivity training is needed for driver #1 and training on the proper wheelchair capacity for all your drivers. Muni provides a crucial service for the disabled members of San Francisco who rely on public transportation. Generally Muni serves this community pretty well; but this incident shows there is more work to do.

I hope you can determine who Driver #1 was and let him know that his lack of courtesy and refusal to accommodate the needs of the disabled – when the accommodations have already been provided – could have had disastrous results for my daughter rather than simply the discomfort she had to endure. I hope too that he will be disciplined for what I can only presume was mean spirited violation of Muni’s policies. 

__________________________________

The website says I can expect a response in 7 days. I can't WAIT to see what they have to say. 

They really should start finding someone to abuse who has a nicer mother. 

No Place Like Home

A frustrating morning is turning out alright.

Steve needed to bring his car to the dealer for some recall item. I laughed when I heard him make arrangements to drop it off at 7:00AM on Saturday. He's not really an early morning guy. But it made sense. He needs the car all week and dropping it off early Saturday insures it will be done today. Still 7:00AM is early for him, especially when he arrives after 11:00PM from an overnight trip to court in a distant county.

I thought what the heck, we'll make an adventure out of it. Maggie and I would pick him up at the dealer and the three of us could go out to breakfast. At 6:55 AM I had to yell at him to get out of bed and get the car down there. Maggie and I left about 15 minutes after he did and picked him up. At the last moment I took pity on the dog and invited him along. That was a tactical error because it further limited our options.  Now we needed to find a place to eat outside so the dog wouldn't freak out. But it was a little cold, so the outside patio had to be in the sunshine for Maggie and for us.

We wandered about, but many places like that cater more to the Brunch set and weren't even opened yet. We headed down by AT&T Park, because its Giants opening weekend and everything is in celebration mode. Not really many breakfast places down there - but lots of taverns. Didn't seem right for us. Maggie started coughing and as we turned to suction her, I realized I forgot the suction machine. We had to rush home. (It was just too early for me too)
 
We dropped off the dog and started out again, this time in our neighborhood. The neighborhood places are small and don't really fit Maggie's chair. I'm not making an ADA statement here. She would sort of fit and no one would turn us away, but it's not very comfortable.  Steve suggested another neighborhood across town and I said No. I'm not driving any place else. I was irked. Something as simple as breakfast out was too complicated for us.

This stuff gets old.

We gave up, went to Safeway, bough some eggs and came home. Of course I dropped the bag of groceries and lost three eggs in the crash which only added to my frustration.

When we arrived, our back deck was bathed in sunlight and protected from the cool breeze. I made scrambled eggs and toast and we found exactly what we were looking for. Dorothy was right. After all of our searching, it turns out there really is no place like home.

Maggie enjoyed that but she was ready to move on to the next adventure. She didn't have much fun riding around town in the dawn's early light either. She just worked her Dynavox until she assured Steve they needed to head to the park. They took the dog leaving me a few minutes of peace.

I'm going back out to the deck with the paper. 

Christmas is coming.

Long time no post....Every time I sat down to write something I ran out of gas. I was fighting a bug all week and simply did not have any stamina. So far Maggie hasn't come down with it, and I hope it stays that way.

We had a rule in my house growing up. We were not allowed to decorate, discuss or even anticipate Christmas  until after my sister Joan's birthday. That's today! I talked to her this morning and won't see her for the rest of the day, so that means I am free to acknowledge that Christmas is coming. Since I was feeling better today we headed downtown early this morning to beat the crowd and check out some of the Christmas decorations.

The best thing about getting downtown early is that it's easy to find street parking. Most of the stores weren't even opened at 9:15 when we arrived. People arriving for a day of shopping would likely not park on the street. They would have to feed the meter constantly. Carrying around all that change would deter them and likely injure their backs. We do not  have that problem when Maggie is with us. We can park pretty much anywhere and put up the disabled placard and not pay a dime. Win Win!!

We checked out the puppies and Kittens in Macy's windows, went through Holiday Lane in Macy's, checked out a couple of other stores, went into the St Francis Hotel, checked out Union Square and we were back home by noon. Very efficient and very festive.

I have to say that the St Francis hotel is fantastic and beautiful, but difficult to navigate with a wheelchair. The front door is not accessible and you have to enter all the way around in the back. It's legal, but not very welcoming. In addition, the glass elevators in the St. Francis are really off limits to interlopers like us. You have to show a room key to access them. I can't really object to that, it is for the safety of the guests but Maggie missed that opportunity. It's almost like the hotels are for the guests or something.

We did experience a "first" while in Macy's. I was taking this picture of Maggie near the nutcracker. A dad was keeping his two little girls out of the shot and it was clear they were anxious to check out the nutcracker. I hurried the picture so we wouldn't hog the spot. As we finished I said, "it's all yours." One of the girls,who looked about 4 years old. was telling us something about what they were going to do. Though we couldn't quite hear/understand her Steve and I both said something like, "that sounds great, have a good time." She frowned and said more clearly "I want a turn getting a picture in the chair that moves".

Oh.

I grinned as it dawned on me. She wanted to get her picture taken while sitting in Maggie's chair. We are used to kids staring at Maggie. The wheelchair, the computer, the tray, her trach etc. It's a lot for a kid to take in. This was the first time, though, that we ever experienced a kid wanting to use it.  

I just said, "Oh I'm sorry honey, she can't get out of the chair it goes with her." She was fine hearing "no." I smiled at her dad, but he did not speak any English and I'm not sure he realized what had gone on.  Maggie was also oblivious.

 We left. Steve and I were chuckling to ourselves and feeling a little of the magic of the Season. .

Weekend update

Good thing we gained an hour this weekend, because we were busy!

Any change in the schedule causes a ripple effect. When the whole country shifts back an hour it takes several days for us to catch up. Add in our busy weekend and forget about it! Maggie fell asleep an hour early last night and by the time the nurse arrived at 11 all of us were sound asleep in the living room.

My posting has been slow of late. We have been very busy entertaining Betty and Vanya. In fact I think I'm using the extra hour to write this. On Friday night we went out for Chinese food, Saturday we went to the Legion of Honor to see the Pisarro exhibit, they toured Fort Point and then we had a picnic at Crissy Field. The rain was threatening all day, but held off

Yesterday we went to Ghiradelli Square. We felt it was out obligation to show our guests the Chocolate factory, or the remnants of it.  We hadn't been there is a very long time. I remembered why when we arrived. It its the LEAST accessible place in San Francisco. Multiple levels with one elevator that  comes four steps above ground level - WHAT??!?!?!.You have to call a security guard to unlock a lift to get up those stairs to get to the elevator that takes you to a bunch of shops that cannot fit a wheelchair. Even in the chocolate factory itself you could not maneuver with a chair. I'm sure they don't get many in there, but I can tell you there's a reason for that. All in all a colossal fail.

We wandered around Fisherman's wharf and stopped in at Cost Plus. It's always important to take visitors to our city to a store that specializes in imports from around the world, including Germany. Oops. Still they had fun.

Maggie loves to use her dynavox to say hello to each of them and they have become very adept at responding, even when she says hello 20 times. Maggie has them well trained.

It is hard to believe they will be leaving us in a couple of days and things will go back to "normal." There are still so many sites I want to see!

P.S. I forgot my gratitude for today. I am thankful that this experience has been so positive - but I am also thankful that tomorrow is election day and all the phone calls and junk mail will stop for a while.  If you are in SF., don't forget to vote tomorrow.

Exile Day 1

WOW.  I did not know my body could be quite so tired. Getting out of the house with all the necessary supplies and cleaning out the entire downstairs of the house was not easy.  As we stood in the empty house waiting for the floor contractor, I silently fretted that he would not show up. I had no reason to think that other than fear.  Can you imagine? We would have been up the proverbial creek.  He did show up, right on time, and started filling my house with his equipment.

Maggie, Steve, Brisco (the dog) and I headed to the east bay to stay at a friends’ vacant, but furnished (!) house.  We drove downtown in separate cars so Steve could leave his at his office and drive across the bridge with us. I have to have another person in the car with me if we are driving very far because Maggie needs assistance.  We arrived, unloaded the car and then took Steve to the BART station so he could commute back to the City to go to work. We did not even bring Maggie into the house at first. 

Getting Maggie into this house was not as easy as I imagined it would be. There are only five steps, and then it is all one level. I knew I could not get her up five steps in the chair. I thought once I took her out of the chair getting the chair up those steps would not be a problem. Wrong. I could not get it up the stairs by myself. Steve laid out these two planks to roll the chair up. Classy, right?  I am sure my new neighbors are quite impressed with the new kids in town. 

Note -- this would NOT be done with Maggie in the chair, which would be extremely unsafe and probably impossible.  

Even using the planks, I could not do it. It was too steep of a pitch and the planks were too narrow. Finally, I took all the equipment off the back and pulled chair up backwards.  That worked but it was a very physical endeavor.  I had to  carry Maggie in (76lbs), pull all the equipment off and carry that in (50 lbs) and then hoist the chair up (105 lbs) backwards  Very hard on my decrepit shoulders. I did it twice on Monday and will likely have to do it twice every day. Maybe not, though. Once we are out, we could stay out or at least keep the chair out until dinner. We can bring Maggie in for her treatments and meds and leave the chair in the back yard.

Speaking of the back yard – it is fantastic. Amazing. Yesterday we sat under a tree near the pool and I dozed in the chair. The yard is big enough and nice enough to hold a wedding. That is where you will find me every afternoon this week. It is a bit overcast in the morning but yesterday the sun was out by noon and it was a perfect afternoon, probably high 70’s with just a hint of a breeze.

Mercifully, nurses for both shifts showed up so I got some sleep last night. If I can do that another couple of nights I will recover, and then we can move back into our house.   That might start the exhaustion all over again, but not necessarily.  Other than the basic furniture, there is no rush to get everything back together.  We can do that leisurely.

And I am into leisure.  

Sunshine!

Ahh Monday. The bus has come and gone and taken Maggie to school. We were happy to bid each other adieu. It was a nice weekend - incredibly nice weather wise. And today is another spectacular day.

This is actually typical June weather in San Francisco. The rain earlier in the month was freaky, but the wild flowers from all the rain are spectacular. I took this with my phone as we were walking up at Lone Mountain on the USF campus (about 6 blocks from here). Actually it was foggy by the time we finished this walk, but earlier the day was great.

 The fog rolls in just in time to screw up the 4th of July fireworks and stays until September. Today will be 78 and perfect. July  and August will be 58 and foggy. We learn to enjoy the good days while they last.

Yesterday we went out to see Steve's dad  and make him breakfast. He lives about an hour from here, but with Maggie that might as well be 10 hours. It is just very difficult to take her anywhere. It is much hotter out there and Maggie was pretty listless in the heat. But then again, so was I. We are temperate climate people.

Steve's dad lives in a split level house. We can get Maggie into the Family room from the back yard because it is at ground level. There is also a bedroom/office and a bathroom on that level. It is open to the kitchen/breakfast room, but those are 3 or 4 steps up. Then the bedrooms are up another full level. Despite the relatively easy access to the family room, it is actually more difficult to maneuver Maggie and her wheelchair in this house than in ours. We were eating breakfast about 10 feet from where she was sitting and she kept saying "Dad, I want to go upstairs." It was a bit heartbreaking. She could see and hear us perfectly well, but she wanted to be included at the table with us.  

You might think it would be easy to just bring her up there, but you would be wrong. We have learned that sometime we just cannot do it. Maggie weighs 76 lbs and her chair with all the equipment on it weighs about 140. We cannot do the lifting to get her upstairs knowing we will just have to bring her back down. Maggie survived and we went back to the family room as soon as it was done, but I felt bad.

On a happier note, our friends Mark and Vicki stopped by. They have been bringing my father in law dinner every Sunday for well over a year now. God bless them both. Mark and Steve have been friends since high school and they live fairly close to my father in law. They brought beanie babies for Maggie to fling around the room and she did not disappoint. It was great to get to visit with them.

Mark found this card and thought of us. I laughed so hard I had to scan it when I got home. This is taken at the Legion of Honor about a mile and a half from here. It explains a lot about both our raccoon problem and the problems with the Muni (San Francisco's bus system)

Enjoy your Monday!

Vote with your Wheels

Maggie decided we should go to the mall today. She would not entertain any other options. The museum? NO! Target? NO! walk in the park NO NO NO! She is a mall rat. It's an age appropriate activity, even if you have to go with your old mom.

We bought some fantastic baby girl clothes for our friend's new baby, which is always fun. It's so easy to pick things out, it's just hard to stop because all of it is so cute! Once that was done I said, let's go get a card so we can wrap this up when we get home and have it all ready to give to the new mama. We went into Papyrus, which is a fancy card store. It's a tad overpriced, but it was right there.

We entered the store and one of the workers was making her way out with three large boxes on a dolly. I pushed Maggie into a side aisle so she could pass. We were cornered because I could not negotiate the tight turn. When she was done I carefully backed Maggie out to the main aisle again. The clerk told me the new baby cards were toward the back on the right. Ok. We started back. A woman was perusing cards and her stroller was blocking my path. I said, "excuse me, please."She looked up and quickly moved the stroller so we could pass.

There was a sharp right turn to navigate with displays on either side. I evaluated how to manage that. Once back to the section I needed I would not be able to reach the cards because Maggie would be blocking the way. I considered my options for a moment and then just stopped.

Why am I shopping in a store that cannot accomodate Maggie's wheelchair?  Why would I spend money on an overpriced card when this establishment makes it so difficult to bring my daughter into her store?

I said to the woman, this just isn't going to work and I started backing out. She said, very nicely, "I will be happy to hand you anything you are interested in."  I pictured myself gesturing and saying "That one, no up, ..to the right. Yes! That one."  Of course I would probably have to do that several times to get something I wanted. I just said nicely, "nope, it's just not going to work."  The woman was very nice. She offered accomodations, but the bottom line is that I could not shop the way I wanted because I had a wheelchair user with me. That just doesn't work for me.

I hope she took note. I hope other people in wheelchairs and their families don't shop at stores that don't have room for wheelchairs. Getting inside the store is not access, you have to be able to shop. Strollers and dollies have to get around too, so it's not just wheelchair users - or their mothers -  who would benefit.

There are a few individuals in wheelchairs who make a living setting up businesses for claims. I hate that. The professional litigant in the wheelchair is giving other wheelchair users a bad rap.  Those people are taking advantage of the laws to further their own interests and they are causing unnecessary grief for the small business owners. Neighborhood Businesses are closing because of this activity. I do not condone this in the least and have no intention of filing any type of complaint.

But I don't have to shop there either. We rolled out, voting with our wheels.

Pracess

The Americans with Disabilities Act (ADA) did so much to improve the life of people with disabilities, including reasonable accommodations in the workplace and physical access to pretty much everything. There are, of course, those who have taken advantage of things and demanded ridiculous accommodations for questionable disabilities as well as those who have made a living “setting up” business owners who haven’t provided access in accordance with the law. They are, however, the minority. The ADA went a long way to really including disabled individuals into society.

 It is probably greedy to want more, but I do.

What I want cannot be legislated. It will likely take a couple of generations of raising society’s collective consciousness before it can be achieved.  The access assured by the ADA is a great start, but what I want is more than an ability to get into a room or building. I want Maggie and her chair to be welcomed when she gets there. I want PRACCESS – or practical access.

Maggie’s wheelchair is big and cumbersome. No one knows that better than we do. Ramps or elevators get this big chair into the building, but the groans and exasperation when we arrive are something less than welcoming. It happens everywhere and most people are completely unaware they are doing it.  We hear comments like, there really isn’t much room here or you are going to have to move, or why don’t you leave her over there etc. It’s not that people are being mean (usually) it’s that there really isn’t room. Often a fully accessible event will have no practical way for wheelchairs to get around or even to get the door opened. Wheelchair users can get in the building, but cannot participate in the event or activity because they are in the way. 

We hear it at the hospital all the time and that is particularly frustrating. Yes I realize space is tight, but we aren’t using the chair to be difficult. When I went into the recovery room the other day it happened twice. As I gathered everything to leave the surgical waiting area, the attendant said, “you can leave that here.”  Surgical waiting in on the first floor and the recovery room in on four. I just smiled and said, “unless they did something AMAZING during this test, I’m going to need it to get her out of here.” She said, Oh, right. When I arrived on the fourth floor, there was an audible groan when they saw the wheelchair. I just smiled again – but it was fake. Obviously I have to have the chair there. They found a place – but only because the next bed space was empty.  

I am not suggesting for one moment that every single place in the world needs to fit Maggies’ wheelchair comfortably. That is not practical. I know that from my own house. I am constantly shifting things around to make Maggie fit in someplace. When we do go places Maggie is always off to the side or way in the back because she’s just in the way otherwise. It is frustrating because it prevents wheelchair users from being full participants.  A better attitude toward the inconvenience a wheelchair  presents would be most welcome. If you think it’s inconvenient to accommodate the chair, try living with one.

Just smile and make a little room. That will go a long way toward making someone feel welcome.  Space will always be an issue in our ever more crowded world, but it should not prevent “pracess.”  

Follow up

This is a follow up to a post from last week Maggie World: Driving Miss Crazy. My unpleasant experience at the lab at UCSF last week and my well placed complaints and blog post created quite a stir. In the week since this incident there have been a flurry of emails and telephone calls to me and God only knows how many behind the scenes. Things may actually be changing this time. Of course, that is what I thought a year ago, so we will have to wait and see. Hope springs eternal.


A couple of folks encouraged me to make an ADA complaint because of the lack of wheelchair access, but I am not at all interested in that. That puts the whole issue into another process of unknown length, creating additional delays. Even if resolved favorably, it likely would not fix the problem. The lack of access not only affects wheelchair users, but strollers too. There are far more strollers than wheelchairs and the ADA will not address the stroller issue.

If that were the only way to get things done I would do it, but there are faster and better ways to get to the same point. Legal action or quasi-legal action should be the last thing considered to effect change, not the first. It is like using a sledgehammer to hang a picture. If you swing that sledge, you have to fix the giant hole in the wall and still have no place to hang your picture. It does more harm than good.

Moreover, filing a complaint like that makes it all about Maggie and that is just not the point. Maggie is fine. Maggie has me. This needs to be fixed for all the kids in wheelchairs and strollers, especially those who do not have a loud-mouthed mom. As you may have guessed, Maggie does not fit into that category.

I suspect on some level Maggie was giggling at the whole episode last week because she was not fooled by my outward civility toward the woman in the lab. She knew I was going to blow. This woman is definitely a part of the problem, but she is not the entire problem. Both the policy and the space issues need to be addressed before they can work on an attitude adjustment for her. As the events of that encounter unfolded, it is likely that Maggie was thinking the same thing I was, “Lady, you don’t know who you are messing with.”

She knows now.

Driving Miss Crazy

Warning, this is long. It's probably something I should wait to post because I'm frustrated and angry, but I want it all written down and documented while it's fresh in my mind.

I drove the car yesterday for the first time since my surgery a week ago. I did not have any actual restriction on driving but I felt so distracted I thought it best to wait. Driving was fine. I just should have avoided Destination: Crazytown.


Maggie needed to get blood work. This is part of the outpatient testing we are doing in an attempt to avoid a lengthy hospitalization. As soon as she arrived home from school, her nurse Josephine and I loaded her into the van and headed up to UCSF. I quickly discovered the movement required to lock the wheelchair into place is quite painful to my newly repaired shoulder. Filed that information and kept going. Onward!

We arrived at UCSF at 3:01PM. I stopped in front of the medical building. The BEST thing going at UCSF now is the valet parking for the medical building. Parking is such a nightmare up there, especially for wheelchair space. I want to kiss the valets every time I see them. I stopped and unloaded Maggie expecting the guy to come running up. I saw one of them moving a stool at the entry. I waited a few moments and then went in to ask. Valet stops at 3:00. Unnngh. Ok. No problem. Josephine could stay with Maggie while I drove into the 9 story parking structure to find a space. Onward! I did find a wheelchair space fairly quickly. Of course there was a giant truck in the space next to it so there was no way I could get the ramp down, but Maggie was already out so I grabbed it. Maybe he would be gone when I got back.

Getting an elevator that is not crammed full of people is the next order of business. Maggie’s chair is BIG and the three of us and her chair take up ¾ of an elevator. We managed to get her up to the second floor to the pediatric lab. This lab has served Maggie her entire life. It is a very small room behind a larger anteroom off the main waiting room of the pediatric clinic. It has been a while since we’ve been in there and in our absence, it has apparently become the capital of Crazytown.

In January of 2009 – 14 months ago – I snapped a photo of a sign hanging in this lab saying that strollers and wheelchairs were not allowed. I was dumbfounded at the sign, no strollers in a pediatric area. I’m sorry, WHAT? And no wheelchairs in a medical setting? How could this possibly be? At that time, Maggie was not denied the care she needed. The tech never said a word about it and took Maggie blood in the doorway of the lab as that is as far as the chair would reach. He accommodated her and her chair. That is all I would ever expect and that is fine with me.

Still, I posted about the sign and brought it to the attention of the “higher ups” at UCSF. They were aghast. Things were going to change immediately. Thank you thank you thank you for bringing this to our attention. There is no excuse for this, etc etc etc. I pointed out that the access issues could be remedied easily and inexpensively by rearranging the space. No construction necessary.

I felt good. I had effected change for overwrought parents of sick children.

Only no I did not. I fixed the SIGN, but not the problem with the sign. Apparently, the 14 months, meetings, and hand wringing had effected only two changes. The first change: the sign was now typed, grammatically correct and a bit more polite, indicating there was an accessible lab on another floor. Note: the accessible lab is not pediatric.

Here are the two signs from January 2009 and March 2010. Progress!

I waited. I did not want to wait for another empty elevator if I did not have to. I expected the same thing to happen. Maggie would be poked in the doorway of the lab room. I expected far too much. This is when I discovered the second change I had effected. The tech was empowered by the sign.

The woman came out, looked at the chair, and said (nastily) “if she can’t fit, you can’t come in here.” Josephine and I just looked at each other in wonder. I said cheerily,” oh we can make it work; we’ve done it many times before.” The woman turned on her heel and went back into her cave. I moved a couple of chairs to fit the wheelchair. I did not realize one chair was holding the lab door open. When I moved it, the door closed and locked. The woman was inside. I waited for her to reopen it, but she did not. I knocked. She opened it and said, “You can’t move the chairs.” I (fake) smiled and said, “We’ll put them back.” I asked her to move the tray of papers out of the way and she said, “if she’s can’t come all the way back here you will have to go downstairs.” “No,” I responded.” You can just bring the tubes etc over here. Maggie is now in your lab and ready for action.” (We are talking about four feet.) She said no. She was dug in. I told her Maggie is served in this lab all the time, wheelchair and all. She called her supervisor and instructed me to wait to speak to the supervisor.

I have now waited for a valet who did not come (my fault), an empty elevator (sad reality), and waited for our turn to be called. I wainted long enough. I said I WILL be talking to you supervisor, but right now I need to get this child served. I gave up and we went to the other lab. The techs there were professional, friendly and kind and had the job done in less time than the conversation upstairs took.

We went back to the parking lot and, of course, the truck was still there so I could not get Maggie back in the van. My day would not have been complete if it wasn’t.

It is really nice to be driving again, but I’m never leaving the house.

The Paper Chase

We continue to try to make our tall skinny house work for Maggie and her wheelchair. It is an ongoing battle and getting around requires lots of rearranging. I think nothing of stepping on the seat of the easy chair in Maggie’s room to get the back door opened or to get to the bathroom. If Maggie is sitting in her chair in her room, that is the only way to get by, unless you carefully maneuver the chair out of her room. It is faster and easier to just climb over furniture. I do not even give it a thought. The problem extends beyond Maggie’s room, though. The downstairs of the house is in constant flux to accommodate Maggie’s needs.


With the boys away at school, I have two empty (or somewhat empty) rooms upstairs in which I could work. Instead I work in a corner of the dining room just outside the door to Maggie’ room. This way I can help the nurse or tend to Maggie if the nurse is not here. The dining room is our “everything” room. We do not have a hallway leading to Maggie’s room; you have to go through the dining room. The table is off center in the room so that her chair can easily fit. We eat every meal at the dining room table (when we are not in front of the television) because what was once the breakfast room has been converted to Maggie’s room.

All the office equipment is in one corner of the dining room, and the dining room table collects everything from important papers to junk mail. Because I use it as an office, it is often spread out with my projects, nursing papers, or any number of other things.

I am buried in paper in this room and there is no escape.

Periodically I organize it all and vow not to let it get like this again. Today is that day. First, I remove the junk. Junk mail, yesterday’s newspaper, printing jobs gone awry etc. go right in the bag. You can reduce every single pile of paper by at least 1/3 by keeping a recycle bag handy. Once the obvious junk was gone, I decided to go further. I was amazed at the amount of waste we generate, and most of it is not our fault.

We receive dozens and dozens of insurance statements every week. Every doctor visit, x-ray, medical supply delivery, oxygen fill hospitalization and everything else sets off a flurry of papers. We get bills we are instructed to ignore pending the insurance companies handling. Once the insurance company pays its portion, we get another set of papers telling us so and advising what we owe, if anything. I have papers verifying that the oxygen tank is filled, and that the supplies on my shelves have been delivered. I know that. I do not need a piece of paper telling me what I already know.

Everything goes through the insurance company, whether it is covered or not. The insurance company then sends a statement telling whether or not the claim has been honored. With each claim are two pages giving instructions on coverage disputes in three languages. Sometimes they save postage and put more than one claim in an envelope, but still each claim has these two extra sheets. One I just opened had 12 pages, four were claims and eight were garbage/recycle. That means for every paper I kept I threw away/recycled three others, counting the envelope. That is an incredible waste

Every time I get a prescription filled at Walgreens, I get three receipts and a set of instruction on using the drugs. I understand the necessity of this. However, do I really need a page of instructions for 13 medications every single time I refill them? Of course not.

How can I stop this madness? We used to have the recycle bin right next to the mailbox in the basement and a lot of stuff never even made it upstairs. That worked for a while but then we had to move the recycle bin to the backyard so that we could get Maggie’s chair though the basement to the backyard where the elevator takes her upstairs. I remember long ago reading about a man in Minnesota or somewhere cold that used all of his junk mail to heat his home all winter. I would happily send this stuff to him because he is a genius, but I would rather not get it at all.

Back to the piles. Unfortunately even after culling through the junk, I actually have to do something with the stuff that is left.

Do me a favor. Do not print this.

Monday Monday

Monday morning. Those words tend to elicit a groan, but not for me and definitely not today. We had a very busy weekend and I welcome the quiet and routine of the workweek. My husband?s 50th birthday was this weekend. We had a huge party on Friday night and a few relatives and friends stayed all weekend. The house is a mess, there is no food in the fridge and there is a mountain of laundry. I have work projects that I put off until after the weekend that are nagging to be completed. Right this minute, though, Maggie is off to school, Tim has gone to class and Steve is backpacking. The house is quiet and I am enjoying it.
In addition to all the revelry, Maggie and I went to a playground to meet up with Tammy and her kids. Tammy has been telling me about this great playground at St. Mary?s Park* that is accessible for wheelchair users and other kids with special needs. I was skeptical because I have been to these parks before. The efforts at access are commendable, but barriers still exist. Ground cover that isn?t wheelchair friendly, access to the top of the slide but not the bottom, things like that. Playgrounds exist for children to run and climb and making them accessible for those who cannot run and climb presents unique challenges.
St. Mary?s park was the best I have seen. It is build on the side of a hill and the main structure forms a bridge all the way across the playground. The bridge, wide enough for a wheelchair, branches off into several activities and a wheelchair user can take advantage of many of them. At 15, Maggie is too cool for that stuff, but I could see how much fun she had just crossing the bridge.
The design of the playground was good, but it was not the best part. The access the park creates is more than just architectural. It provided access to typical childhood experiences. Watching the kids, both typical and special needs, play with one another was heartwarming. There were several families enjoying the park, including a group of parents with their special needs kids. That made my heart soar. Their kids, all little and playground age, were enjoying the playground and the socialization with other kids. Their parents were enjoying the socialization with each other. This playground is serving a huge need right there. The isolation for parents of special needs kids, especially in those early years, makes a difficult situation harder. These parents have each other. Instead of meeting in the waiting room at the neurologist office or in a formal support group, they are hanging together in a normal childhood setting. That is progress; it is something I certainly never had when Maggie was little.

*St Mary?s park is at Justin and Murray Streets in San Francisco, the playground is down the hill. The accessible entrance is at Justin and Benton Streets. In addition to the playground, there is a baseball field, basketball and tennis courts and a dog run. There is something for everybody. Check it out.

The Pen is Mightier than the Sword

Okay, it is a keyboard rather than a pen and I rarely use a sword so I do not have comparison data. Nonetheless, I can attest to the power of the written word. Ok, the walls of Jericho didn’t come a tumblin’ down, but it is a coup.
UCSF, like any ginormous institution, is a hierarchy of interconnected corporate departments. While the medical care is delivered in an efficient manner, the behind the scenes work of keeping the medical center operating, compliant with laws and efficient takes an army of people. Of course, changing anything or getting anything accomplished means endless meetings and justifications. Unless you get to the right people first. Two of my blog posts Maggie World: Access this! (January 9) and Maggie World: Friends in Tight Spaces (july 29) [not sure if these links are working] made their way to the right person who in turn sent them to the department heads who can make a difference. It was those department heads who came to the meeting last night. These are three corporate bigwigs wanting to hear the issues first hand.
In the beginning of the meeting, we introduced ourselves and explained our role on the council. There are both family members and staff on this council. The family members have children with a variety of issues, from the occasional hospitalization to the chronic and ongoing issues to those whose children have passed away. It is sobering for anyone to sit at the table and listen to our collective experiences. By happenstance, I was seated next to the biggest of the three wigs and was the last to introduce myself. I told them that Maggie was a frequent flyer, she had undergone more than 70 surgeries, had hundreds of admissions, and then said, and I may be the reason all of you are here tonight. I joked that I have had many wonderful experiences at UCSF too, and I have even written about those, but the bad ones make the rounds.
They listened with interest and concern to the stories several parents shared about difficulties with both access and attitude toward our kids in wheelchairs. One gave somewhat corporate answers initially, (a reflex, undoubtedly) but when called on that, started dealing with the parents on a more human level. When she spoke of the general decline in service in the world, she was reminded this is a HOSPITAL, not Exxon. People arrive at a hospital in a heightened state of emotion and the non-medical staff needs to be cognizant of that and of their role in either exacerbating or easing those emotions.
Of course, we heard of the difficulty in finding the space necessary to make everything accessible, and I completely understand that. In my own home, I have to climb over furniture to get around Maggie’s wheelchair half the time. My thought, and that of many other members of the council, is to work on the attitude of the employees while the physical/structural issues are being addressed. Can you teach manners and etiquette to adults who did not learn it from their parents? Maybe and maybe not; but they can be held accountable for job performance. Interpersonal skills should count in a service-based organization. If they did not learn them as a kid, they better learn them now, or suffer the consequences of not meeting job requirements.
Because if they don’t that one crazy lady with the blog will just write about it again. But, if writing about the bad experiences helps make changes, or even get the right people talking about it the experiences are almost worth it.
Almost.

Friends in Tight Spaces

In the years since the enactment of the American’s with Disabilities Act (ADA) there have been some improvements made in the public’s sensibilities of the issues disabled individuals face. Everything from parking spaces to access is improved and the things that are not actually improved are at least on the radar. We have had many experiences of improved access or sheepish apologies because people are at least aware of the issues now.

Interestingly one of the places we have had the most difficulty is the hospital. Two separate hospitals, in fact. Why is it that there are seven disabled parking places in front of the supermarket but only three at the hospital. The second hospital has many disabled spaces but they are not wide enough to get a wheelchair unloaded. Isn’t it apparent that more people at a HOSPITAL will use a wheel chair than people in the general population? Also, haven't they figured out that an absence of steps does not automatically make things accessible? I hate to play enforcer of rules they already know.

When we were registering Maggie for her procedures the other day we had to go into Hospital admitting. It is a busy place with numerous chairs for patients waiting to be called into the cubicles for the admission process. There is room for Maggie’s chair, but she is inevitably blocking someone. That is no problem; we just roll her out of the way. Once called to the cubicles, it is more difficult.

The cubicle has a desk for the admissions person and two chairs for the patient and a companion. There is not much room for anything else. Especially not a wheelchair. As I tried to get in from the corridor, I automatically pulled one of the armchairs out of the way. The following dialogue ensued:

The admissions woman wagged her finger at me and, smiling, said, “NO don’t move that. She can wait in the hallway.” (“She” is Maggie.)

I said, “No she can’t” and continued. I thought she was concerned that I was going to the trouble, but that was not it. She did not want me messing with her chairs.

She said, (more insistent) “No. Leave that there.”

I looked up puzzled and said, “Don’t worry, I’ll put it back.”

She said again, “But she can just wait in the hallway.”

I said, with a bit more emphasis this time, “NO, She cannot. I have to be next to her to suction her.”

I proceeded to move the chair and put Maggie’s wheelchair in its place. The wheelchair is bigger and the cubicle was crowded.

She smiled thinly and said insistently, “The problem is I have to be able to get out.” At one point in the process, she would have to make copies of something.

Undeterred I continued situating Maggie and sat down in the other chair, looked directly at the woman, and said, “No, the problem is that Maggie’s the patient… (pause)… she needs to be admitted, and she needs attendant care. I will certainly move her so you can get by.”

Then I get the doe eyes and gentle correction for my impatience. “Wow, you’ve probably been here all day.”

I just smiled broadly and said, “Nope, we just arrived.” (The “You pissed me off” was inferred).
Admission went smoothly and she was able to get by the chair without any problem. (Whaaa??) I backed Maggie out of there, looked at her armchair in the corridor, looked at her, smiled and left.

She can put her own chair back.

If it an't broke, don't fix it

As we waited for the school bus this morning, Maggie and I took a good long look at the house. It needs a paint job that is for sure. We talked about how skinny and tall it is. I suddenly realized Maggie has not been in the upstairs of the house in more than two years. We used to carry her up there all the time to hang out or sleep in our room if we did not have a night nurse, but not anymore. She is too big. Maggie is limited to the four rooms downstairs because there is no access to the upstairs bedrooms.

We have loved in this house for 22 years. It was my grandmother’s house and we bought it from my dad before we had kids. It was such an enormous house when it was just the two of us. That changed as kids arrived, and got bigger and continued to accumulate “stuff.” With all Maggie’s equipment added to the mix we really are shoe horned in here now.

This house is very typical San Francisco, it goes straight up, and that makes it among the worst possible domiciles for a wheelchair. We have made adaptations to make the house work for us; we moved Maggie downstairs and converted the breakfast room into her bedroom. We remodeled to add a shower to the half bath off that room and my husband built a deck off the back. We had an elevator installed outside from the back yard up to the deck off Maggie’s room; it does not go all the way up to the bedrooms.

Most of the work was done about five years ago when Maggie was half the size she is now. She’s still very small, but as she grows, her equipment grows with her. The shower chair fills up the shower now. There is no room for Maggie to hang her legs off the end of the chair. When she gets a shower, she is wedged in there with her legs against the wall. Maneuvering her wheelchair around the four rooms downstairs takes some engineering as well.

There are many doors in this house, including French doors in the living room and into Maggie’s room. We have removed the two dispensable doors into the kitchen, but the rest of the doors are necessary. The wheelchair fits through the doorways, but often an open door from one room blocks access in another area. For example, here is the open door to Maggie’s room blocking the doorway to the kitchen. We have the same problem in the hallway. The open doors from the living room and the basement create obstacles. In order to get through you have back the wheelchair up and go around to shut the doors. Maggie helps sometimes. When we are coming out of the kitchen through the doorway pictured, she will often get her foot behind that door and use the high muscle tone in her legs to swing it closed ahead of us. It does not always work because she has to hit it just right, but

when it does, she is very proud of herself.

The large wheelchair also means our dining room table is off center. The dining room is the pass through from the front room to Maggie’s room, so we need a wide enough area to make it through with the chair. It doesn’t really matter except the chandelier always looks a bit cockeyed because it’s not centered above the table.

When you get right down to it, this house does not work for us at all. The adaptations we made are no longer effective and I am not sure what else we can do. Occasionally, I look at flat ranchers and marvel at how much easier it would be for all of us; but I know we will likely never move. Getting a house like that would likely require relocating to the suburbs, and for many reasons, I do not think that’s for us.

We are city people and we take advantage of the amenities of living where we do. Golden Gate Park is just ½ block away. Most importantly, however, all of the services Maggie receives are county based and San Francisco City and County are one and the same. Leaving the City means moving outside the county and starting everything over again. School is working, the nursing is set up, her doctors are just a few blocks away, and she is familiar and happy. In addition, Steve would have to stop riding his bike and commute which would be more time away from home and more frustration. Personally I used to be adamantly against moving to the ‘burbs, but I don’t feel that way anymore. At this point, I would probably be fine either way, but I do love living here, despite the Rubik’s cube we have to do every time we want to go from room to room.

For now, we will just ignore the hassles and the dings in the wall from repeatedly missing the tight corners while pushing the wheelchair. It may not work very well, but it ain’t broke either.