Tuesday, January 31, 2012

Welcome to the Middle Class

My job gave me another day to teach, so I picked up three new students and actual office hours. The extra hours also qualified me for health insurance. Yes! This is why I went to Grad School and gave up three years of my life (and my family's life). All I wanted was health insurance, a little retirement and a steady paycheck. I wanted to be middle class.

When that first paycheck arrived back in September, I was ecstatic. At last, I am officially middle class. My husband and I together earn enough to pay ALL our bills and have a little left over for savings. We can even afford to go out to dinner at a nice restaurant on occasion, the kind of restaurant with cloth napkins and a wine list as long as the menu. We can go to the movies now and not have to sneak in our own drinks. And we can afford a tank of gas and groceries on the same day.

It seems that all of my middle class dreams have come true.

For the majority of my life, I've lived on some kind of government assistance. I grew up on government cheese and dental care from the free clinic. My parents worked, but they didn't earn enough to support two kids and not need Food Stamps. When I left home, I became a starving student, working my way through college with the help of Student Aid and two jobs. Then I became a mom, and when my daughter was diagnosed with disabilities, she received the support of Social Security, MediCal, and California Children's Services. We received In Home Support Services for her daily care, and I myself qualified for MediCal. Even when I married Rick, who has always worked two or three jobs, we didn't earn enough for health insurance. We did buy a house in an expensive area, but we needed to live in that expensive area so Queen Teen could go to the excellent schools there. Just making the mortgage every month was a financial juggling act.

I started my life as a kid on welfare, eventually worked my way up to "working class," and after more hard work, have reached "middle class."

I have no idea what middle class means.

On the day I calculated my yearly salary and then started leaping around the living room, yelling, "Oh my god, I'm rich," my husband sat me down and explained that after taxes and paying the bills, I would be broke again.

"But it's more money than I've ever made in my life," I argued.

"I know. But we're no where near rich."

A few days later, I bought a Motley Fool book determined to learn what "middle class" meant. I wanted to know why the middle class people I knew complained about being broke? Please! I'll bet not one of them has had to chose between groceries or medicine. Not one has had their power turned off. Oh boo-hooh, they can't afford cable. Whatever! Try not being able to afford gasoline.

I'm still reading the book, and I realize I don't have a clue how to be middle class. What is a 401(k)? Retirement? Do people still believe they'll actually be able to stop working someday? How the hell do you buy stock, and why would anyone in their right mind want to? Wait, you mean budgeting is more than just tallying your expenses at the end of the month while deciding which bill you can skip? Who knew?

I now realize that every social class has its own set of problems. Sure, many of the middle class have no concept of what real poverty is. However, they don't get much help sending their kids to college or paying their electric bill when money is tight. There are no programs to help middle class families pay medical bills that insurance doesn't cover (but I still want to kick a person if they bitch about the price of portabella mushrooms ).

I picked up the health insurance forms from work yesterday and I'm trying to figure them out. I'm also asking myself if I can actually afford health insurance. At 45, can I afford not to? But it's a big chunk of change out of my check every month. There goes any hope of buying a newer car  next year.

Hah! There I go. Sounding like a middle class person.

Oh boo-hoo, you can't afford to buy a newer car? Well at least you have a car! A car that runs! That doesn't break down all the time. And at least you can afford to take it to the shop to keep it running.

Getting used to being middle class will take time.

Wednesday, January 25, 2012

Queen Teen vs. the new stool

Queen Teen has a stool in her room which came with her vanity table. It's lovely, but it's also too unstable for her. She keeps falling off of it when she tries to pivot to reach her shelves. So two weeks ago, she and I went to Kohls to use a gift card and buy her a new stool. We picked out a round, padded ottoman, the kind you can put things inside.

 In the store she liked it. When we got home, she hated it.

For thirty minutes, we discussed the merits of the new stool. How sturdy, comfy, and easy it is to sit on. How she can pivot without falling off. How she can store things inside of it. She agreed to give it a try.

The next day, I heard loud banging from her room. No yelling, just a loud "thump!" "bang." "draaaaaaaaaaaaaaag." "bang!" "thump." "draaaaaaaaaaaaaaaaaaaaaaaaaaaaaag."

Walking into the hallway to see what the hell my daughter was doing, I almost tripped over the new stool, now sitting rejected in the middle of the hall. I peeked inside her room and saw Queen Teen slowly and carefully shoving her old stool back to its spot next to the vanity table.  Gripping the wall, she leaned over on wobbly legs and pushed the stool as hard as she could. It moved about two inches. She readjusted her position then pushed the stool again. Over and over, she shoved that stool across her bedroom until at last it reached the vanity table. Then she sat down triumphantly, worn out from the effort, but smiling.

I ducked back into the hall before she saw me, not wanting to interrupt her moment of victory. I glared at the banished stool, then I carried it to my room.

To say my daughter is stubborn is like saying water is wet.

O.K. then, we'll add the new stool to the list of other helpful items you hate, like your glasses, hearing aids, the new way you're being taught to sit and stand (to prevent falls) and the rain boots that would keep your feet dry if you'd wear them.

But I also felt pride watching my daughter push that vanity stool across her room. She was panting with the effort, fighting her ataxia and hypotonia through sheer will power. Remembering the prediction from doctors that this girl wouldn't walk by the time she was 16, I watched her fight that stool all the way across her bedroom. I had to fight my own need to help her; she didn't call me for help. She did it herself and I wasn't about to take that moment from her, despite the fear urging me to grab her when she wobbled each time she had to adjust her hand on the wall.

She drives me absolutely nuts, but you gotta admit, Queen Teen is the toughest chick in town.

Tuesday, January 17, 2012

Saturday, January 14, 2012

Struggling to grow up

The appointment last week went well. Queen Teen was her usual trooper self and the doctor was actually helpful. And then a trip to the Disney Store made everything all better. She was grinning like ... well, like a kid who gets to pick out anything she wants at the Disney Store. And then we got pizza on the way home. As Queen Teen says, "No one can resist pizza." Overall, it wasn't such a bad day.

The doctor was impressed with Queen Teen. She's a 16 year old girl dealing with the typical adolescent challenge of trying to gain independence from her parents, while at the same time coping with the loss of hearing and all the rest of her disabilities. But she is managing to do this with strength, humor, and sheer determination. She is angry, and has every right to be. She's nervous and afraid, but at the same time willing to push the boundaries to gain more independence. Her body won't let her do the things other kids are doing; sometimes her body won't even let her do what she wants to do. Absolutely everything she does is hard work, including sitting in a chair. No wonder she lashes out sometimes. No wonder she cries when she has to go to one more doctor, no matter how nice the doctor might be.

I remember how hard 16 was; life seriously sucked ass. I had my own overwhelming problems that I barely managed to cope with, but none of them can compare to what Queen Teen must cope with every day. The thing she has that I didn't at 16 is a supportive family. She knows that no matter what, Rick and I will always be there for her. She is loved by us and her dad and her extended family. We've all got her back. Even on her worst days, when she's growling with rage and lashing out at everyone around her, we are still there for her. That's a certainty she doesn't have to doubt.

When I think about Queen Teen and her future, I am hopeful. It will never be easy, but she is an astounding human being, capable of far more than anyone expected. She learned to walk when we were told she wouldn't. Now she's learning to read after everyone figured it would be impossible. There is a joy in her that nothing can extinguish. And I will do everything I can to guard that joy. Queen Teen  impresses the hell out of everyone she meets. But the next few years are going to be tough. She's struggling to grow up and figure out her place in the world, just like every other teen-ager. Her place is a bit more complicated to find, but she will. She's that's determined.

Wednesday, January 11, 2012

The Doctor wants to control my entire life!

I'm taking Queen Teen to see a therapist in Mill Valley tomorrow. This person is supposed to help us manage Queen Teen's anxiety issues, especially around doctor's appointments. But right now, this appointment is creating anxiety for her, not helping.

When I told her about the upcoming appointment two days ago, she yelled that she wasn't going. Luckily I told her in the morning right before the school bus came so I didn't have to listen to the yelling all day. When she got home, she seemed to have forgotten about the appointment. But today when I picked her up from school, she was really quiet. When we got home she told me she didn't want to go to the doctor's.

"I'm tired of going to doctor's. Why do they have to be so far away?"

"I'm tired of them too, Honey. I wish they were closer."

"Well I don't want to! I hate doctors!" Then she started crying. It got even better from there.

Her councilor came to the house for his usual appointment and the two of them talked in her room for a while. She told him how angry she is about having to go, how much she hates doctors, how they are boring, how the car ride is too long... and on and on and on. She started to cry and he told her everything would be okay. When it was time for him to go, she went into the hallway and hit her calendar with two fists. "I'm not going and you can't make me!"

Oh this is fun.

Sometimes I really hate being the mom. I hate having to drag my furious daughter to doctor's appointments, hate having to hold her down when they need to do blood work, hate bribing her to get in the car. I hate the long drives, the long hours, the endless paperwork. I hate my daughter's screams of rage and then the tears when she realizes there's nothing she can do to stop it.

At dinner she looked directly at me and said, "The doctor wants to control my entire life!"

That is probably exactly how it feels to her. She has very little say about what happens to her. All she can do is fight for the meager control she has.

Where is the balance in all of this? How do I help her stop feeling so helpless, while also providing the care she desperately needs? How can I help her understand doctors are trying to help, not torture her?

Maybe the councilor and the therapist tomorrow will help me find some answers. But for now, this really sucks.

Wednesday, January 4, 2012

The first New Year in ages I haven't been depressed.

I can now say with full certainty that the antidepressants are working, because this is the first year in... wow.... at least 20 years I haven't been depressed on New Years. Every year on New Years Eve, I would think about the past year and all of its trials and struggles. Then I would think about the coming year and the trials and struggles that were sure to come. Rather than feeling hopeful and excited, I'd feel the weight of the past year and think, "Thank God it's over." The future didn't hold much promise for things getting any better; it would be more of the same: work, fear, struggle and stress.

But not this year. The blues hang around on the fringes of my thoughts, but haven't taken the spotlight. I feel weary from an eventful year, but not beaten. The future is full of uncertainty as usual, especially with Queen Teen, but I'm not afraid of it. There's a sense that whatever may come, we'll all manage. I'm not exactly excited and hopeful, but I am certain that life is good and we are blessed.

I'm still not in love with this medication. It makes my brain hop around like a hyperactive squirrel on steroids, or like my dog, a geriatric boxer who thinks sitting means spinning around in circles. And I'm barely eating, something I need to keep an eye on so I don't lose too much weight. Luckily I gained about 11 pounds in grad school so I had the weight to lose. It also makes me chronically veracious, and not in a good way. Ask me my opinion and before my brain is able to send the signal to keep my mouth shut I've said exactly how I feel. Not a good thing to do at work... in front of your boss... while you're still on probation.

Hyperactive truth-telling is better than suicidal urges, though.

Monday, January 2, 2012

New calendar, fewer challenges

Taking the 2011 calendar off the wall, I flipped to January to see what we were doing last year. I was still an intern then, shadowing Laura Fogg as she taught visually-impaired students all over Mendocino County. At the same time, I interned for the Earle Baum Center, working with one elderly lady in town. I flipped through February, March and April, when my days were packed with teaching and also studying for two big exams. Finally came May with the 21st circled in black marker: graduation!

After graduation came the summer when my body crashed from exhaustion and my brain decided to stop absorbing serotonin (gee, I wonder why). In August, I started my new job as an Orientation and Mobility teacher, the position once held by Laura Fogg, my aforementioned master teacher. I sat in the driver's seat of the county car and taught my own caseload of visually impaired students. In a flash came December and the holiday season. Then the year was gone.

I think 2012 is going to be a tad bit calmer.

I am amazed by everything I've accomplished in the last few years. Amazed because I wasn't sure I could do it. I've got a lot more gray hair now than I did when I started grad school, but I guess that's a good trade off for a steady paycheck. My stress level is still way too high; I've been living on deadlines for so long I've forgotten how to live my life without them. Everything has a due date in my mind, including cleaning the fish tank and reading a book. So 2012 will be the year I learn to let go of those self-imposed "due by" actions. By 2013 I will be calm and organized.

Wait a minute, did I just give myself another due date? Stop being a stress monkey before the end of this year. 

Old habits are hard to break, as they say. And really, have I ever not been a stress monkey?

One thing that hasn't survived well is my book publishing company. It's still alive, but has taken a major beating while I've been in school. My last book sold decently well, but not enough to cover the book costs and help the press. And it looks like the domain name expired so the website is gone! I could have sworn we renewed it, but the site is down. I need to figure that problem out immediately (sometimes due dates are a good thing). I signed a new book with a new author I'm excited about, so I really need to get the press back in order. A shot of cash and some new blood is just what the doctor ordered.

There are no new mountains to climb this year, thank goodness; I'm not allowed to hunt for any new challenges either. Instead, I will focus on my daughter and helping her transition into adulthood, my new job as a teacher, my publishing company, and writing plays. As usual, I'm doing too much, but I like it that way. I can juggle this much if I remember to breath now and then, and not worry about how quickly I get it all done.

Happy New Year, everyone. May it be filled with love, creativity, and enough challenge to make you feel alive, but not so much you forget to laugh.