Queries from Strangers Part III

This is an ongoing series about the stupid things people say to or about Maggie and our life. I’ve written other installments. Just click on the "stupidity" tag in the list of categories to the right and you will see those posts.

This makes it sound like I’m fending off these comments every day, and I’m really not. I still get more than my share of stupid comments, but either it has slowed down or I’ve grown immune because I don’t hear this stuff so much anymore. Nonetheless, well meaning people should understand that a lot of their comments are not welcome at all.

Some of you wanted to know how I respond to dumb remarks , and I have snappy comments for many. The subjects in this post, however, are met mostly with a stony silence. To quote an excellent phrase my brother used recently, a whisper can be louder than a shout. These categories are: 1). She is not a pet and 2) religious observations should be offered silently. (And just to be clear, I have a dog that I adore and I have a religion that works for me.)

I cannot count the number of times Maggie has been compared to someone’s cat or dog. I cannot think of a single time this wasn’t completely offensive. I realize you love your pet and that's great. Nonetheless, emergency trips to the neurosurgeon or calling 911 because Maggie isn’t breathing do not compare to taking the cat to the vet. Maggie’s often frantic emotional responses should not be likened to your dog’s fear of sirens or thunder. No disrespect to your cat, dog, horse, pig, fish or any other pet, but PUHLEASE.

The worst of it is when these comparisons are made by medical professionals. One example (of hundreds): When Maggie was little she could not tolerate riding in the car. We could go about a mile and then she would start screaming. S C R E A M I N G. And that made her turn blue. It was unnerving and did not make for safe driving. Her wheelchair needed some repairs and rather than come to San Francisco, as was the custom, the woman wanted me to drive to Stanford, about 45 minutes south of here. I simply said, “I’d rather wait for you to come to SF, I just cannot come down there. It would be unsafe because Maggie can’t tolerate it. She said, sympathetically, “my cat is the same way. I just can’t do anything because of it.’ My silence was pronounced. There was a pause and then she said, uhhhh, I guess that’s not the same thing, is it.
No. It’s not. Comparisons to healthy children are hard – appropriate, but hard. Comparisons to animals are not ok.


The Religious comments come fast and furiously. We used to go to church with Maggie all the time, but we take her only rarely now. Religious comments when we are at church are acceptable, even if they make me a bit uncomfortable. We are there; the subject is apropos. However, strangers stopping me in the park to tell me that God chose me, or Maggie, or people telling me that Maggie is an old soul and gets to enjoy this life with people caring for her, or people asking me if I thought I was interfering with God’s work by having all these surgeries (honest to God!) are not. And I REALLY resent being told that I must have done something bad because I’m being punished. Here’s news: I am not the devil and I am certainly not a saint. Neither is Maggie.

I will make a sweeping generalization here. People who are willing to share their religious views in public assume everyone agrees with them. They do not think these are "opinions" or "views," they are trying to share what they believe is the TRUTH. It may be your truth, but it may NOT be mine.

To those of you sharing applying their religious views or rules to my family, know this: Even in the event I agree with you, I will still not discuss this. The fact that my daughter has a feeding tube does not automatically dictate where I stand on end of life issues, for example, and thank you but NO! I will not discuss and will certainly not debate this with you. No one should not mistake my silence as acquiescence or agreement. My religion is private and personal to me. I wish yours was to you.


Smile at her, say hello to her. Pray for her, pray for me, send positive vibes, do whatever positive thing your religion or philosophy does. We thank you for that. But don’t come up to me in the grocery store, or in the park, and interpret my daughter’s situation from the standpoint of your religion. It makes everyone uncomfortable.

Go tell your cat or dog or fish or pig.

Weekend visitor

When Maggie gets excited about something, she pumps her left fist in a rapid-fire movement. (Think Arsenio Hall.) Ask her if she wants to go to the park, if she likes Mission High, or any other question that would give an enthusiastic YES! She answers with a big smile and a dizzying movement of her raised arm. I am not sure when this started, sometimes it takes a while before you notice a trend, but we all know it now. We can even ask what she does when she is excited and she gives a little performance. That is done with a sly grin or a bored expression that says, “I’ll do it, but I’m not your monkey.” It’s hilarious.

Last night Maggie did not want to go to sleep. She was completely exhausted when she came home from school. So much so, in fact, that she just started crying, and that is very unusual for her. She slept for about 45 minutes and was back to her happy self. Maybe that nap threw her off or something, but when the nurse arrived (late) at 11:30, Maggie was wide-awake. I tried to stay out of her room as much as possible to avoid more stimulation, but of course, I have to be close enough to suction her when she needs it. I told her she had to sleep because she has school today and because there is a surprise this weekend.

Surprise? Her eyes just opened up as wide as can be as if to say “spill it, mom.” Ok, Maggie, guess who is coming home this weekend? She sucked in some air and waited. There was really only one possibility and we both knew it. I looked at her with wide eyes and said “Yep! EDDIE is coming home.“

I had to step back to avoid getting fist pumped right in the eye. She had her whole body into it. Obviously, this was not the smartest thing to do when I was trying to get her to go to sleep, but her reaction was priceless.

Eddie is #1 son, who is a senior in college in Nevada. He lives in Nevada now, past the era of coming home for summers etc. We only see him every couple of months and even then, it’s generally a blur. This time is no exception. He is coming home because some local buddies rented a house together and are having a house warming party on Saturday night. Of course, he has a bike race on Saturday so he cannot leave until 3 or 4 in the afternoon, drive four hours, come here, shower and then go to the party. He will go back on Sunday. I will see him for all of 20 minutes because I have to meet some friends early Sunday morning. Maggie will get those 20 minutes on Saturday evening and then get to spend time with him on Sunday.

It doesn’t matter, all Maggie wants is to see him enter and say “Whassup Mags?” or simply “MAGGIE!” is his fake baritone voice. That alone would entertain her until Thanksgiving.

Maggie does not even know yet that we are all going to go to the Collegiate National Mountain Bike Races at Northstar in October to watch him compete. He will be so busy at that event (he’s in charge of coordinating A LOT of it) she may not see him at all. Further when she does see him he may look like this


I know that would get her fist pumping.

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.

100 years of strong women

The long holiday weekend comes to a close just as the Bay Bridge re-opens. Hmm. The Circle of Life. (Ok, that's a stretch).

The circle of life is never far from my thoughts these days, though, as I clean out my aunt's apartment. There are so many things, most of them just the incidental items of her life; but many trigger happy memories and others are puzzle pieces of family history that need to be connected.

Yesterday I started boxing up books and rifled through the pages of each to remove any papers or identifying information. I found a bunch of pictures in a book about Hollywood, of all things. (Not sure of the significance of that, if any). Among those pictures was one of my grandmother Rose who died 20 years before I was born. There aren't very many pictures of her and I stopped and looked at it for several minutes. I can see so many of my relatives in her face, especially my cousin Moira. But I also see Maggie. They were born almost exactly 100 years apart but there is a resemblance.

That made me happy. It's important to be connected to the past even if only by the shape of your nose and some delicate features.

On the DL

I am injured. I have been ignoring the pain and discomfort for a few weeks and, surprise surprise, it is not going away. In fact, it's getting worse every day. Now I have to do something about it. Arrgh.

The injury is to my shoulder, or arm, or perhaps even my neck. The pain is in my upper left arm, maybe above the bicep, but it hurts whenever I rotate my shoulder. Guess what? I rotate my shoulder a lot. Putting a purse on my arm, putting a shirt or jacket on, reaching to close the car door, and dozens of other activities are all extremely painful. I am completely left handed so everything is done with that side.

For some reason the pain does not increase when I lift Maggie but I know that lifting her is exacerbating the problem. She weighs 66 lbs and I have to lift her dozens of time every day. In addition I have to reposition her in the wheelchair a lot and those movement are particularly difficult. Thats not going to stop, though, so I have to factor that in to the recovery.
As I sit here there is a dull pain in my shoulder and arm, but if I move into a certain position and I'm not sure exactly what it is until it happens the muscles start spasming and the pain is excruciating. That happened in the middle of the night last night and I scared the bejeebers out of my husband when I started yelling.

So today I have to find a doctor to deal with this. Ironically, my sister the nurse, works for a shoulder specialist. She is encouraging me to go up to Santa Rosa to see him, but I just don?t think that's practical. It's tempting because I know I will get attentive care, but it?s over an hour each way and who knows how often I'd have to go. I just cannot be so far away and take so much time when I can find someone locally.

Whatever I do, I have to do it soon. I cannot be on the disabled list. I am central to the team.

Labor Day

Labor Day Weekend is here. It is the traditional end of summer. It used to be that school started the day after Labor Day, so it was important to cram as much fun as possible into the last weekend of summer. That is not as true these days because over the past several years many (if not most) schools have opened a week or so before Labor Day. Nonetheless, it is a weekend to be enjoyed.

Steve and I are going to a family party. His cousin and her husband are having a big anniversary celebration and the entire family is invited. That will be fun. This particular family has been the center of partying and fun over the past several years. They threw great weddings for each of their daughters. None of the rest of us has kids interested in or old enough for marriage. (It seems extended family gets together only at weddings and funerals. Weddings are a LOT more fun.) They live in Pleasant Hill, an aptly named suburb about 25 miles east of here, an easy jaunt over the Bay Bridge and beyond. When the invitation came for this party, I happily accepted.

That was before I realized the party was on Labor Day weekend. Especially Labor Day Weekend 2009. Getting anywhere will be a nightmare.

The San Francisco Bay Bridge, a major artery connecting the City to Oakland, Berkeley and all points east (including Pleasant Hill) is closed this weekend. The Bay Bridge, which carries over 280,000 vehicles every day, including weekends, will be closed from 8:00PM tonight to 5:00 AM Tuesday September 8. They are planning a mind-boggling feat of engineering and execution to install a stretch of roadway. (You can read about that here: http://sfgate.info/cgi-bin/article.cgi?f=/c/a/2009/08/23/MNHU198AG1.DTL) This is a big deal here. That means over a million cars that would be using this bridge over the next few days have to find another way in and out of the City. Or another way to Pleasant Hill.

There are other ways, of course, We could head north over the Golden Gate Bridge and then east over the Richmond San Rafael Bridge and then cut back south to get out to Pleasant Hill. (an extra 40 minutes) or go south to the San Mateo bridge and cut north to get there (another hour). Alternatively, we can take BART – the Bay Area Rapid Transit – and leave the car in the City. Bingo. It will still take some extra time, but it is the most efficient of the three choices and the most responsible too.

The only problem with that plan is in case of an emergency. If something happens with Maggie, we cannot get back here quickly. I am uncomfortable with that. Not so uncomfortable that I won’t go, but it will definitely be at the forefront of my mind as we board the train, as we mingle at the party and on the way home. It will likely make the evening a bit shorter because I will be anxious to get back. This may sound alarmist, but that’s just how we roll. It is actually a huge leap forward for me. Up until about a year ago, I would not even consider going at all if we did not have a car. A few years before that I would not have gone across the Bay, with or without a car, if Steve were not home with Maggie.

She is stronger and tougher than she used to be, but she does not like it when we are both gone. Spoiled? Hmmmm. Perhaps. When she gets agitated, things tend to happen. But not this time. Nothing will happen. Of course, I am going to ask Tim to stay close to home, just in case. Tim cannot really intervene the way Steve and I can, but he is pretty good.

If nothing else, his presence can keep his mother from trying to swim home.

High School

Maggie has been a high school student for a full week now. She loves it. She loves the kids, the noise in the hallways, the bus ride, the teacher, everything.

Except the new schedule.

The morning bus is here at 7:10 A.M. That means she has to be dressed, cathed, fed, in her chair, hair brushed, talker programmed, oxygen tank filled, suction machine charged, everything loaded onto the back of her chair, down the elevator, through the basement and out in front of the house 75 minutes earlier than last year. Most of this happens while she is asleep. I finally wake her to put her jacket on and get her into the chair. She gets on the bus half-asleep.
This ungodly hour is forcing me to get things ready at night. I have a new system. I program the talker, put it in the bag and on the chair and park the chair where it can reach the charger. Same thing with the suction machine. That way they are charged and ready to go and already loaded. I have to do the oxygen in the morning because it would just bleed out overnight. That only takes a minute, though.

Her new classroom is very different from the middle school. The setting is a very large very bright room, which is great. It is a kitchen – two actually - and hearkens back to a day of better budgets when schools offered cooking classes. Apparently, an occasional class utilizes the ovens etc, and it will be part of the curriculum for Maggie’s class. That will give Maggie and her classmates the opportunity to mingle with the typical student population on their own “turf,” which is good.

There is another distinct change this year. Maggie is not the only student with a communication device. For the last two years in middle school, she was the only one routinely using the “talker”. She received A LOT of individual attention, which was great, and she was the QUEEN BEE for sure. Now, five of the six students in her class have them and use them. Maggie will have to earn the Queen Bee role now. (I have little doubt that will happen). Instead of the individual attention, Maggie will have to keep up with the other kids and that will likely result in huge strides in her abilities to manipulate the device.

When I went into the classroom, I was greeting the students. Three of the boys I know from before. There is one other boy and a girl that I did not know. I was greeting the girl and I heard a synthesized voice say, “Hi, my name is Juan. Hi my name is Juan.” It took me a minute to realize he was talking to me. (There is LOTS of activity). I went over to him and said “Hello Juan, I’m Sally, Maggie’s mom. It’s very nice to meet you.” He shook my hand, beamed at me and stole my heart.

I hope he and Maggie go to the prom.