Tuesday, February 27, 2007

Rave of the Day for February 27, 2007: 

I wanted to do my little Oscar review tonight, but I am far too exhausted and fibro-fogged to attempt it. In the meantime, though, I was tidying up miscellaneous files and found this article that has been sitting on my desktop for about two months. It about the author of the excellent blog, The 19th Floor.....

The Invisible Man
Mark Siegel’s struggle to be seen and heard

By Adam Wahlberg

All Mark Siegel wanted to do was listen to Dennis Kucinich give a speech. He didn’t need special attention. He just wanted to sit and listen. Didn’t happen. Story of his life.

“It was a packed house at Roosevelt Senior High School and my nurse and I were seated up front. Kucinich finishes his speech and gives me this horrible, pitying look and comes over, grabs my face in his hands, and plants a wet one on my cheek,” Siegel recounts in mock horror. “I was pretty weirded out by the whole thing, but let’s face it, I make a good photo-op.

“I think he just got carried away,” he adds. “Either that or he was just so excited to see someone shorter than himself.”

Such is one’s life when spinal muscular atrophy (SMA) confines you to a wheelchair.
Everywhere Siegel goes people see him as a symbol. To some he’s up-from-adversity Horatio Alger. To others, he’s oh-the-poor-dear Tiny Tim. He’s rarely just Mark Siegel.

“People either don’t see you at all or they see nothing but the chair,” he explains. “They get self-conscious and don’t know how to act. It’s understandable. It doesn’t really bother me.”

I didn’t feel compelled to plant a wet one on him when I met him in the fall of 2002, but I admit I was unsure how to behave. He was relatively new to the downtown condominium where I live when we introduced ourselves in the elevator. It was awkward talking to him. He speaks softly and with a throaty timbre, almost as if he’s under water. A ventilator regulates his breathing, which causes him to occasionally pause while forming words. I wasn’t sure how conversant he could be. This uncertainty evaporated a few weeks later when he asked me to vouch for him at the polls.

On our way to and from the voting place that snowy morning, we shared memories of the late Senator Paul Wellstone — “he was one of the few politicians who wasn’t condescending to disabled people,” Siegel told me — and got to know each other. Turns out he’s a lawyer. And a disability-rights activist. And a novelist. And a funny storyteller. Clearly, when you look at the person and not just the chair, there is a lot to see. I wanted to learn more about him and how he lives his life. And, as is his nature, he agreed to once again serve as a symbol: that of the working disabled lawyer.

Pathways To Employment
At 8:15 each weekday morning Siegel and a nurse — he requires 24-hour care — load into a specially equipped van and drive to a state Department of Human Services office in Roseville. It is here that Mark works as a policy consultant in the department’s Pathways To Employment division. “We build systems that support the employment of people with disabilities,” he says. “My job is varied. Some of it is analysis, some community outreach, some logistics.”

Siegel spends much of his time working on the Medical Assistance for Employed People with Disabilities (MA-EPD) program — “it’s Minnesota’s version of Medicaid for disabled people … it pays for services they use in their daily lives, such as personal assistance or wheelchairs,” he says.

As part of his job, he gives presentations about MA-EPD and other state resources. I sit in during one at the Roseville Public Library. I assume speeches like this are difficult for him, but he gets a laugh right at the top by complaining about being cooped up in a library all afternoon, then proceeds to do 15 polished minutes. Audience members nod and smile, take notes and thank him for his visit.

It’s this ability to connect with others that serves him so well in his career, says one of his close friends. “His personality always shines through in whatever situation he is in,” says Laura Ferster, a lawyer at Dorsey & Whitney. “A big part of being a lawyer is the ability to put people at ease and establish a rapport, and he certainly has those skills.”

He gravitates toward positions that allow him to advocate for others. His first job out of law school was at the Minnesota Justice Foundation, matching law students with public-interest volunteer opportunities. He then spent a year clerking for the Hon. Franklin Knoll in Hennepin County District Court before returning to advocacy at the Parent Advocacy Coalition for Educational Rights, where he counseled young disabled adults. He found his current job two years ago through an advertisement in the Access Press.

“This is really the perfect position for me,” he says. “Not only do I strongly believe in these services, I use them. The MA-EPD program is how I pay for much of my help.”

Living Inside His Head
Siegel, 30, was born with SMA, a genetic condition that weakens and ultimately destroys the nerves that control voluntary movement. Unlike those with spinal injuries, he does experience normal physical sensations. And for a while he did have some control of his limbs; he could hold a pencil when he was a child. But today his range of motion is mostly limited to wiggling his thumbs and toes.

He has a normal-sized head that he keeps propped up with a folded towel, a handsome face with wavy brown hair and an earring in his left ear. His torso is quite small; he weighs only 75 pounds. He rarely eats food since chewing is difficult for him. Instead, he ingests liquid meals directly into his stomach through a gastrostomy tube, which he unabashedly shows me. “I enjoy eating, but this is just easier,” he says.

Headsets help him control most of his activities. He has one to emulate the mouse on his computer, another lets him use the phone, and a third responds to verbal commands. “Most of my interaction with the world occurs via my head … you could probably cut it off and put it in a jar a la ‘Futurama’ and I would still have a productive life,” he laughs.

Growing Up in Green Bay
Siegel is the oldest of three children. His mother is a retired college professor, his father a microbiologist-turned-sales consultant. He is the only member of the family with a disability.

With several extended visits to the hospital, he didn’t exactly spend his childhood playing shortstop or building tree houses. Physically, he was underdeveloped. But intellectually, he thrived. Blessed with a fertile mind and a vivid imagination — he spent much of his free time writing short stories — he breezed through high school. “I was sick a lot and missed a lot of days, but I did OK in class,” he says.

He enrolled at St. Norbert College, where his mother taught German, just outside his hometown of Green Bay, Wisc. (Yes, he is a Favre-loving Packers fan.) He graduated with a 3.88 GPA, earning a degree in English. After that, the law beckoned.

“I first thought about law school in high school as I saw lawyers as people who like to debate, like to use words, and that appealed to me,” he says.

So he headed north to the University of Minnesota Law School. And like most first-year students, he went through a bit of a Paper Chase adjustment. “Law school was a shock at first … suddenly you’re surrounded by people who are just as bright, if not more so, as you are,” he says. But, as always, he adapted and thrived. And after graduation his legal career unfolded logically and quietly, just the way he wanted.

Except for the time he was the subject of a state Supreme Court case that divided the legal community.

All Disabled Clerks Out of the Courtroom
Siegel was a star in Judge Knoll’s eyes from the day he interviewed to be a clerk. “When we got done with the standard questions, I asked him if he had any, and he said, ‘What’s your judicial philosophy?’ [laughs],” Knoll says. “I had never been asked that by a law clerk interviewee. … This indicated to me a person who was doing some serious thinking and was not afraid to speak his mind. Nobody in my chamber, including me, was intimidating to him in any way, I can assure you.”

Once a few minor adjustments were made — a desk was put on the floor of the courtroom so he wouldn’t have to navigate stairs (clerks typically sit on a raised platform just below the judge’s bench), an automatic door opener was added, a few computer programs were installed — Siegel was able to perform all his clerking duties.

“He was excellent,” Knoll recalls. “He was good with the lawyers, and his legal writing was top-notch. His work was right up there with the best of the clerks I’ve had, and I’ve had about 30 through the years.”

Then it came time for Siegel to staff a jury trial by himself for the first time. That’s when things got complicated.

“I was clerking during a personal-injury case. The plaintiff had been run over by a school bus, and early on in the trial his attorney makes a motion to have me removed from the courtroom. His concern is the jury will see me, a disabled person with a job, and they will be less sympathetic to his client, who he is arguing is too injured to work.

“Well, Judge Knoll lets me stay. The plaintiff ends up losing and his lawyer makes a motion asking for a new trial, again saying I should have been removed from the courtroom. The judge gets ticked. He writes a letter of complaint to the Lawyers Professional Responsibility Board that ends up being appealed all the way to the state Supreme Court,” he says.

To say the judge got ticked is putting it mildly. He went Tony Soprano on the guy. “Yeah, I think I was more angry than Mark over the incident,” Knoll concedes. “I was just staggered by the motion. To me it was a clear case of a member of a protected class being discriminated against on the basis only of his disability. When everything was over, I felt I had an obligation under the rules of judicial conduct to report the unethical conduct.”

The case made Siegel a bit of a cause celebre. The legal community polarized into those who rallied around him as a martyr of workplace inequality, and those who felt the judge had overstepped his bounds in seeking public reproach against the lawyer. Tim Maher, who was Knoll’s other clerk at the time, remembers that the coolest head during the imbroglio was Siegel’s. “I think he had probably dealt with similar things before and this was just more of the same. He didn’t let it faze him.

“What was kind of funny was when Mark got to the hearing at the Supreme Court courtroom in the Capitol building, he wasn’t able to enter because it wasn’t accessible [he had to set up one of his own ramps to get in]. Accessibility is something Mark takes seriously,” Maher adds, “but I think he appreciated the irony.”

The Supreme Court ultimately decided that while the lawyer’s actions were worthy of admonishment, they were isolated and of a non-serious nature. In other words, the lawyer was reprimanded, but not as severely as the judge would have liked.

“I respect the members of the court, but I disagree with their reasoning and with the outcome,” says Knoll. “I thought the court should have made a stronger statement that this was inappropriate.”

To this day Siegel seems unruffled about the whole affair. It’s clearly not his favorite subject, and he dismisses questions about it with a “whaddya gonna do?” look. But, after some prodding, he does say, “Disability discrimination is still not considered as serious as racial or gender discrimination, which is unfortunate.”

The 19th Floor
If Siegel is reluctant to get on his soapbox in conversation, there is one place he doesn’t hold back: The 19th Floor. This is his daily blog that he’s maintained since the summer of 2002 (named for the floor he lives on in our building). He comments on any topic on his mind that day, from movies (he loved Kill Bill) to politics (he doesn’t love Dubya). He notes in one of his first posts, “My reason for blogging is simple: In a life where I have to depend on others for everything, writing is one thing that I can do independently.”

He continues, “Many of the Anonymous You have probably never met someone with a disability. By reading my stuff, you get a little peek into a life that’s at once very similar and very different from your own life. You may read this site and feel amusement, puzzlement, voyeuristic fascination, or even pity. Blogging can be a way to give people other views on disability that have nothing to do with a telethon or a human interest story on the local news.”

The site is only one of his many literary pursuits. He recently completed a coming-of-age novel, which he is hoping to get published, and is now working on a science-fiction short story and a comic strip that features a superhero in a wheelchair. That’s some prodigious output, especially for a guy who writes by clicking a remote-control device with his right thumb. “It’s not a fast process,” he admits, estimating that he taps out about 15 words a minute, “but I really enjoy it.”

Not a Role Model
It is safe to say that nobody since Charles Barkley wears the title of role model more reluctantly than Siegel. Just ask those who know him best.

“There are two things he doesn’t like,” says Maher. “He doesn’t like to be called a role model, and he doesn’t like to be called an inspiration.”

Judge Knoll concurs. “I remember I once referred to him as a role model and he just got madder than hell at me,” he recalls with a laugh. “He let me know in no uncertain terms that he doesn’t want to be characterized in that way.”

Yet the special recognition keeps coming. For instance, last year Siegel was given an award by the Courage Center for his contributions as a disabled person in the workplace. He enjoys the recognition of such awards but takes them with a grain of salt. “It was nice, but I remember thinking that I’m only 29. I’m just getting started, and I’m already getting an award? It seemed a bit odd,” he says.

It is odd. Well-intentioned, but who else gets an award for essentially just living his life? It’s enough to question one’s place in society. What is he if not the image in someone else’s mind of a man in a wheelchair? Strip away all the kudos and the legal battles and the maulings by politicians and what is left? It’s a question Siegel ponders often, and addresses in a poem he wrote and posted on his Web site. It’s vivid and melancholy and funny and brimming with life. It’s Mark.

Looking at me,
I’m not much.
The body that curses
And twists like a slow river.
The voice indistinct and muted,
Barely heard at a dinner party.
The plastic tube disappearing into
The hollow of my neck.

I’m the All-American Superhero
I’m the Invisible Man.
I’m the Circus Freak.

I’m like a forgotten flame,
Burning quietly in someone’s hearth.
At time, I’m little more than an ember
Lying among the ashes.
And I need the breath of another to give me life.

Other times, I’m a forest fire,
Powerful and cunning and fast,
Scorching the earth while old men
Sleep in distant watchtowers.
For now,
I’m content to sit on the end
Of your candle, flickering
In the night breeze and casting
A ribbon of shadow across your sleeping face.

And I’ll still be burning when you rise with the sun,
The light coming through the window and
Streaming through your hair.
— Check out The 19th Floor at www.the19thfloor.net

Siegel in his Own Words
The 19th Floor: October 05, 2002 — Yes, My Date Went Very Well
A word on disability and relationships. As many people with disabilities will tell you, society tends to perceive us as asexual beings. We’re seen as either too sick or too “different” to ever experience attraction, romance, sex, etc. Of course, this is bullsh--. But we spend many a Friday night alone because the idea that we’re not desirable has become somewhat ingrained. And you start feeling a bit like an outsider to the human race; like everyone else got invited to a long, great party and you’re still checking the mailbox for an invitation. So when someone comes along and tells you you’re kinda cool, it’s something unique and just a bit wondrous.

The 19th Floor: September 20, 2003 — In My Solitude
Just saw American Splendor tonight. A remarkably funny yet sad movie. I saw aspects of my own life in those of the characters. There’s a sequence where the real Harvey Pekar and his friend Toby are discussing how they cope with the loneliness in their lives. And I started to think about how I deal with my own loneliness. By reading. By watching television. By writing things like this blog. And maybe I look to my nurses too much for companionship. It’s not like I don’t have friends, but most of them have families now and I don’t see them much. When I was interviewing for new nurses this summer, I deliberately looked for people who I thought I’d like hanging out with. I went out with one of them tonight and it is nice to have people who I enjoy spending time with. But they are, after all, paid to be my friends. And this is probably how the rest of my life will be. While it’s not the life I would have chosen had I any say in the matter, it’s still sweet and I wouldn’t trade it for anything.

The 19th Floor: July 30, 2003 — Crypto
Here’s another blog, written by a woman with spinal muscular atrophy (SMA):
Don’t tell anyone, but all these blogs by people with SMA are just a front for us to exchange coded messages regarding the upcoming revolution.
Which reminds me: Attention all points: The three-footed lion sleeps on a bed of roses. I repeat: the three-footed lion sleeps on a bed of roses.
Back to your regularly scheduled program …

Monday, February 26, 2007

Bonus Rave of the Day for February 26, 2007: 

I'm gonna do a general review of the Oscars if I get the chance, but for now, I'd just like to acknowledge the awesome acceptance speech by Forest Whitaker, winner of the Best Actor award. It was incredibly sincere and eloquent and brought a tear to my eye. I'm including the entire text here. Enjoy....

“Thank you. Thank you. Just a second, just a second. OK. Take it. OK. I wrote something down, because I thought if it would happen that I would be a little overwhelmed and I am. So, OK.

When I was a kid, the only way that I saw movies was from the backseat of my family's car. At the drive-in. And, it wasn't my reality to think I would be acting in movies, so receiving this honor tonight tells me that it's possible. It is possible for a kid from east Texas, raised in South Central L.A. in Carson, who believes in his dreams, commits himself to them with his heart, to touch them, and to have them happen.

Because when I first started acting, it was because of my desire to connect to everyone. To that thing inside each of us. That light that I believe exists in all of us. Because acting for me is about believing in that connection and it's a connection so strong, it's a connection so deep, that we feel it. And through our combined belief, we can create a new reality.

So I want to thank my fellow believers in The Last King of Scotland. I want to thank Peter, Jeremy, Andrea, Lisa, Charles, Kevin, James McAvoy, Kerry, Stephen, Fox, DNA, Channel Four. I want to thank the people of Uganda, who helped this film have a spirit. And finally, I want to thank my mom and my dad. I want to thank my wife Keisha, my children, my ancestors, who continue to guide my steps. And God, God who believes in us all. And who's given me this moment, in this lifetime, that I will hopefully carry to the end of my lifetime into the next lifetime. Thank you.”

Rave of the Day for February 26, 2007: 

Yesterday, I was perusing a blog I check regularly, which led me to a fun link:

15 Geek Movies to See Before You Die

Which led me to two more fun links:

81 Movies for Geeks That Do Not Suck

Top Romance Movies - 76 Romantic Flicks for Guys and Girls

And may I suggest the blog in question itself?

The 19th Floor

I should add this to my links list at some point.

Sunday, February 25, 2007

In honor of Oscar Sunday, here's some short-ish movie reviews.... 

Yes, I'm STILL scanning medical records, hence more time to kill. I'm hoping I can finish before the Academy Awards tonight so I can take the records to the rheumatologist's office tomorrow as it is located in the same complex as my aquacise class. Watching the Oscars usually wears my little brain out, so I intend to go to bed as soon as it's over.

Have to admit I've only seen one or two of the films up for awards. I've not been inside a movie theatre since July. Neverthless, Dan and I got a Netflix subscription for his birthday/our anniversary, and before I completely forget what we've seen so far (I had to print out a list to remind me as it is), I'll make some assorted comments even though all except one were either older or simply not Oscar contenders.

The first one is the exception. We rented "United 93". I was always interested in seeing it, but not in the theatre just in case I started sobbing and annoying the other patrons or something. This is an excellent movie despite the subject matter. This story had the potential to be melodramatic or overly graphic or simply disrespectful of the people who died, but none of those things happened. Most of the dialogue and action came from the actual phone conversations and other transmissions and whatever else the writers were able to piece together from the recollections of witnesses. The cast were all relative unknowns, which really was a great idea because it helped you feel like you were a random passenger on a random plane on which an extraordinary thing happened. And even though you knew from the beginning that everyone on that plane was going to die, it was not as painful to watch as I was expecting because it was done within the bounds of good taste. The director did a fantastic job, and I hope he gets an Oscar.

Now, here I should point out that even though Dan and I are sharing the Netflix subscription, we are supposed to be alternating choices: something Dan likes, then something I like, and then something we'll watch together. But Dan never did pick out anything just for him, so there is a proponderance of stuff peculiar to my taste. This should explain some of the following selections, heh heh.

The next selection was big time just for me: "Eddie Izzard: Dress to Kill". This was the comedian's stand up show recorded in 1999, and the title comes from his fondness for dressing up like a woman, which he explains quite well in his show. He is not one to do one-liners, instead launching into long rants about politics and many other subjects that are quite amusing and intelligent and interesting. I love stand-up comedy in its various styles, and this DVD is particularly good because the man is so eloquent and quirky.

One movie Dan and I watched together was "The Break-Up". This is the story of a mismatched couple and their nasty battle over posession of their condo. I'm glad it was about the end of the relationship because Jennifer Aniston and the other guy were not convincing at all as lovers in the beginning. But they were dead on as a bickering doomed couple. And they both effectively demonstrated some of the worst traits of each gender in a relationship situation. The woman assumed the man would change, was angry and disappointed when he did not change, and could not understand why he didn't even want to become her ideal. The man wanted to live exactly as he had when he had been alone, assumed the woman would never tire of being the perfect hostess, and couldn't understand why she might want more from him than his video game expertise. Yes, I am aware that these are stereotypes, but I know so many people in real life that fit them that I thought they were well represented. Lastly, I appreciated the fact that no one slapped a sappy happy ending on the movie, which would have ruined it.

Next we saw "Corpse Bride". This one follows in the footsteps of "The Nightmare Before Christmas". A nervous groom flubs his vows, goes to a cemetery to rehearse them and inadvertantly gets married to a dead woman. Typical Tim Burton oddity, but better than I was expecting. They even manage to make a dog skeleton cute. Johnny Depp is the voice of the groom.

Netflix likes to recommend multiple movies featuring the same star, so when they suggested "Secret Window", I decided to give it a try. It's based upon a Stephen King novella, so I figured it would at least be interesting. And I like to look at Johnny Depp no matter what, heh heh. Depp plays a writer living in his summer cabin after he discovers his wife has been cheating. He is stalked by a weird dude claiming that Depp stole his story. Depp finds it more difficult than he expects to prove the story is his. I enjoyed the inevitable pivotal plot twist. Not the best from King or Depp, but worth a look.

I then picked "Over the Hedge", which Dan had already seen. It's elaborate animation in the vein of "Toy Story" featuring various forest animals who awaken from hibernation to discover that the suburbs have taken over while they were sleeping. A crafty raccoon, who accidentally trashed a grumpy bear's stash and has only a week to return it, cons the other critters into crossing into their new neighbors' yards to steal as much junk food as possible. In the process, they run afoul of an exterminator, domesticated pets, vehicles, lawn obstacles and a crazed president of the local homeowner's assocation. The animation is fantastic; you can see every hair on every furry critter. The voices are what really makes it special, though. Nick Nolte voices the selfish bear, Bruce Willis the greedy raccon, Garry Shandling the reserved turtle, Wanda Sykes the skunk with a tude. Steve Carrell is awesome as the voice of a super hyper squirrel who can burp his ABCs. My favorite was the melodramatic opposum voiced by William Shatner; he does a way over the top "death" scene that is absolutely hilarious! If you haven't seen this one yet, check it out!

And finally, on Saturday, Dan and I watched "My Super Ex-Girlfriend". If you're in the mood for something light and amusing, this should do the trick. A nice guy starts dating what he thinks is a nice girl, played by Uma Thurman. But she has a secret identity: she's actually superhero G-Girl! Our nice guy then discovers he's falling for a co-worker, and he tries to let G-Girl down gently. Hell hath no fury like a superhero scorned! Rainn Wilson plays the buddy who's a legend in his own mind. And surprise, Eddie Izzard is the supervillain! Kinda silly, but a great deal of fun.

That's all to report for now.

Saturday, February 24, 2007

Whom do you expect to see when you die? Do you need a specific message from them? 

I know this is a way bizarre topic, but a couple of things got me to thinking about it. Again, I am killing time on the computer while copying medical records, so why not ramble about something other than the usual health and attempts to unpack? And I've already filled two posts with details about taxes, so why not talk about the other inevitable thing, death?

Last night, the movie "Contact" was on cable. It's the movie in which a scientist receives a decodable signal from extra terrestrial life. In order for her to be able to comprehend what they have to say, though, they pick a messenger from her past: her father who had died when she was young.

And on Thursday night, a "Grey's Anatomy" episode aired in which the main character has drowned, and while co-workers attempt to resuscitate her, she has an out of body experience during which her mother, who had just died from a heart attack, hugs her and tells her that she was an extraordinary person. This helps Meredith realize that it is not her time to die yet, and she revives. Of course, we don't know if Meredith was really dead or just hallucinating during hypothermia, but the "afterlife" she had was sad and a bit disturbing, especially the notion that she might have let herself drown because of some cruel words that had been said to her while she was alive.

Assume for a moment (and this is a BIG assumption, I know) that the fictional representations are accurate and that there is an afterlife and that you do see loved ones in the afterlife who had passed before you. Whom would you expect to see first? In my case, it would probably be my mom, who died ten years ago.

The next question would be: would you need that person to resolve anything? Would something that troubled you in life still be so troublesome in death that you would need an apology or some sort of reassurance? In my case, I would not.

This is not to say that my mother and I left nothing unresolved at her death. In fact, we had some very serious issues, the kind that can leave you traumatized forever. And I think my mom was still suffering from unresolved trauma when she died.

I, however, do not remain traumatized despite making very painful discoveries about my mother after her death. They were extra frustrating at the time because I could not discuss them with her or fix anything. But I was able to make peace with her and myself, which is something I guess not everyone can do.

My mother had a deep-seated mistrust of me as an adult and hid her anger with me for reasons that were unknown to me then. She did not treat me poorly in any obvious way, but I nevertheless could sense in her a coolness that she did not seem to have with other family members. At the time, I thought it was sad but figured she would only change if she so chose.

Probably anyone that knows my mother thinks this is an exaggeration because she was so funny and eloquent. I too was willing to give her the benefit of the doubt and never addressed her seeming discomfort with me just in case I was imagining things. It was only after her death, when I had to sort through her possessions and came across her journals and letters that I found I had actually underestimated the extent of her anger and discovered the nature of the grudge against me that she had carried for the last 15 years of her life.

There were two major reasons for her lack of trust in me: one was my suicide attempt, and the other was that she was actually jealous of her second husband's interest in me. The reaction to the first one is pretty understandable. The second one, though, sounds petty without any explanation of the situation with my stepfather.

Mom's second husband was a sweet talking con man, to put it nicely. He was 17 years older than my mom, and since my mother's own dad had died before she reached the age of two, I'm guessing that she perhaps subconsciously thought of him as a father figure. He charmed her into thinking that he was her knight in shining armor.

At first, I was flattered that he paid more attention to me than my own father did. I was accustomed to a family somewhat on the cold and distant side. I was a teenager then and actually naive enough to believe him when he claimed he acted the way a father was supposed to act.

But unbeknownst to me, he started staring at me from across the room all the time. He was coming into my bedroom to watch me sleep. I never noticed, but my mother did, and she was insecure enough to believe that I must be flirting with him when she wasn't around or something like that.

My mom and stepfather purchased an old fashioned-type photo shop in a tourist town 85 miles away from where we lived. Because my mom was the only one with a job and benefits, she had to stay in town and work while my stepfather rented an apartment in the tourist town and ran the shop. They could not afford to hire any help, so during the summer I was 17, I was expected to work at the shop with my stepfather.

It was all right at first; I got to hang out with the locals and eat at all kinds of restaurants. And my stepfather was nice to me, so nice in fact that I barely noticed that he was standing a bit too close to me in the darkroom and that his hugs lingered a bit too long. As an adult, I now see that he was grooming me in order to eventually molest me, but I was completely oblivious at the time.

I was startled and a little creeped out when he kissed me on the lips and remarked that he would have to teach me how to kiss properly. I convinced myself that he must have been joking. After all, he was married to my mother, not me.

But then one day he made a grab for my chest, and I realized I had NOT been mistaken, that he really was a pervert. I kicked him away from me and ran into the room I'd been using for a bedroom. I barricaded the door and didn't come out until the next morning when it was time to open the shop.

I did my job at the photo shop without comment for the rest of the summer. My stepfather never laid a hand on me again because he was smart enough to know I would put up a hell of a fight. My mother noticed me avoiding him, but never said anything because she was glad her husband started paying attention to her again.

I considered warning her that hubby number two was not the sweetheart he seemed to be, but my naive teenaged mind feared that she would be too devastated to handle the truth because she seemed so happy and in love. I actually thought she would be better off left in the dark. It never occurred to me that by staying silent, I was actually putting other women and/or girls at risk because it left him free to prey upon someone else.

Believe it or not, the suicide attempt at age 18 had nothing to do with my stepfather. I had been planning to kill myself for years prior to my mother even meeting the guy. But my mom thought otherwise.

Not all of this thinking was her fault. The shrinks at the institution I was placed in were merciless in their attempts to blame her for my suicide attempt, implying that she was a bad mother or didn't love me enough or something equally atrocious. In the end, she decided that I did it because I resented her, and in return, she resented me.

The truth is, nobody was at fault for my suicide attempt but me. I was not trying to make a statement or bring my family together or lash out at anyone. I simply developed a tunnel vision, possibly caused by a chemical imbalance, where I could not see beyond a narrow range of choices about how to cope with life in general.

My mother, though, saw it as an intentional betrayal on my part and could never trust me again. I found it shocking that time barely dimished this wound for her. But I admit I could see why she felt that way.

When I first found out after her death how she had really felt about me, I experienced my own feelings of betrayal. I was angry and couldn't even yell at the source. But I worked through it, worked very hard in fact, with excellent grief counselors I was lucky enough to find, and after a year or so, I gradually was able to release the emotional pain.

So if I see my mom after I die, I don't need her to fix anything for me. I am already fixed. I will simply be glad to see her.

But will she need me to say somethng to heal her? I don't think so. I like to believe that after we die, we lose our preoccupation with such things.

I hope that if she sees me, she'll be happy about it.

Thursday, February 22, 2007

Things I learned while filing my taxes.... 

Basically, I am killing time tonight while making scans of medical records. The rheumatologist's office wants copies of asolutely everything BEFORE my appointment on Wednesday. Since I have seven years and about a dozen doctor's worth of stuff, I'll probably be at this all weekend so I can get these to the office Monday or Tuesday.

Anyway, I filed the weirdest tax return of my life today. Between the federal and the state of Colorado (South Dakota has no state tax, yayyy), my return was THIRTY pages long! It included forms I'd never heard of before.

Even though I profess to hate numbers, since I've handled all the finances and taxes for Dan and I for eleven years now I've had to develop a grudging respect for them. And I've got to admit the stats for 2006 versus 2005 are quite surprising. I mean, I knew on a certain level that things were pretty dire for us financially last year, but to see it all down in black and white was sobering.

To start with, our income for 2006 was half what it was for 2005. This is including my SSDI. Now I don't feel so guilty for having trouble making ends meet.

Our expenses were through the roof. The deductible stuff was a full 95 percent of our adjusted gross income! No wonder our savings ran dry in November.

We did NOT have to report cashing out our nonqualified annuity as income because we had actually paid more into it than we got out and so were operating at a loss. This kept us in a lower tax bracket, so low in fact that we ended up with a CREDIT for paying into Dan's 401(K) during the first part of the year when he still had that nice cushy job in Denver. I'm pretty sure that won't happen again as Dan's current income is too low now for us to be able to divert much into a retirement fund.

And because we stayed in the lower tax bracket, only one-fifth of my SSDI lump sum payment ended up being taxed. And I found out that my lawyer fees were deductible, which was another big sigh of relief. Next year's taxable percentage of SSDI should be about the same.

Our effective tax rate after all those deductions was less than two percent! I thought this had to be an error at first, but no, it checks out. This is down from 8.5 percent in 2005.

Of our deductible expenses, a full THIRD of it was for medical! I wonder how many thousands or maybe even millions of people spend a third of their income on medical expenses, even with insurance? Unfortunately, this is not a problem that is gonna get any better for most people; at least I should be eligible for Medicare later this year.

We drove over three THOUSAND miles for medical care in 2006! Damn, Denver is a huge city! I drive probably 10 miles max to see a doc in Sioux Falls now.

It is a pain in the ASS to file partial-year resident taxes in Colorado! All these questions about which expenses occurred in Colorado and which occurred elsewhere. And damned few instructions or guidance, even from the state of Colorado itself.

One-sixth of our deductible expenses were related to moving. We got to include not only the moving company charges but also mileage to move stuff in our Saturn and lodging for two nights. You can only do this if the move is related to a job that is more than 50 miles from your residence.

We got credit for the federal excise tax thingy. We didn't have to get out old phone bills and add up the taxes if we didn't want to. We just said we had long distance service between 2003 and 2006 or something like that.

TurboTax wouldn't let me file my return until I listed my occupation. I was stumped for awhile and then finally typed in "disabled". It took that, so I guess it was ok.

A fourth of our deductible expenses were mortgage interest. And we got to deduct points on the new mortgage, which was way cool. We shouldn't have nearly as much mortgage interest for 2007 with only one mortgage and only half the payment of our house in Denver.

Our payments to charity were only one-quarter in 2006 what they were in 2005. Yikes. Unfortunately, I don't see that changing much until our income increases.

We didn't have to include any profit from the sale of our house as income. That's because it was worth under $250,000 and we lived in it eight full years before selling it. Funny, I didn't think of it as a low-priced house until I filled out that form, heh heh.

The Social Security Benefits and the Earlier Year Lump Sum worksheets are complicated sons of bitches. First, you have to factor the taxable amount of the total payment plus your spouse's income. Then you get to figure out percentages for prior years, which is tricky if you haven't got TurboTax to help you out.

I swear, there are worksheets for everything. We had to fill one out just to determine whether Dan's new job in Sioux Falls was more than 50 miles from the one in Denver! Duh!

So what am I gonna do with the refund? I'm gonna pay down credit cards with it. I'm seriously bummed I won't be able to pay them off, but I have to set aside some funds to fence the yard and to pay for various lab services that our insurance has decided not to cover.

On the bright side, I THINK we can pay off all the cards in a year IF we stick to a tight budget and IF there are no further financial catastrophes. Problem is, Dan has never in his life been on a truly tight budget, and the medical expenses this year have already exceeded an entire month's SSDI benefits. But I'm going to try to stay optimistic anyway.

I'm finally on my last scan from a particular segment of records. Good stopping place.

Guess I'm poor on paper but rich in love.

Wednesday, February 21, 2007

Quickie post.... 

I haven't blogged much because I'm trying to file my taxes. I expect, and need, a refund. It has been like negotiating a mine field what with the lump sum SSDI payment covering multiple years, medical and other expenses which nearly exceeded our income, dual state residency, cashing out a retirement fund when our savings ran dry, etc. but I think I'm nearly done with the federal part.

I'm negotiating one more technical glitch with TurboTax, but once I tackle that, the rest should be a breeze in comparison. I ROCK doing my own taxes! I think someone should present me with an honorary accounting degree after all the research, blood, sweat and tears I've had to invest this year.

It is very important to me that I file my own taxes. I have this need to feel productive which is quite difficult to accomplish when I'm too sick to work, to clean my own house or even get out much. With liberal use of a calculator, Quicken, the IRS website, helpful message boards and TurboTax, I can file a return almost as well as a healthy person, heh heh.

Next year should be much easier. We won't have any moving expenses, home purchase or sale, annuity distributions, prior year SSDI earnings, COBRA payments or state tax form to worry about.

Did I mention that I ROCK?

Thursday, February 15, 2007


Ok, I saw the surgeon this afternoon. The lump on my neck is just a cyst, albeit an unusual one and different than any I've had before. But removing it is completely optional.

Since i don't do well with stitches and adhesives and the like, I opted just to leave it alone. I was warned that this lump may never go away, but that really doesn't bother me just so long as there's nothing unhealthy about it. I gave up being concerned about superficial things like looks a long time ago because it consumed energy I couldn't afford to spare.

The thing I am concerned about, though, is the letter I received in the mail yesterday from the rheumatologist I saw last month. He decided since my bloodwork was normal (it always is except the c-reactive protein, which fluctuates) and since no one was forthcoming with a copy of my lip biopsy report that it is doubtful I have Sjogren's! He states that while I can stay on the Restasis and pilocarpine, the other meds aren't necessary, and I don't need to see him again for a year.

Has the man never heard of sero-negative Sjogren's? I know for a fact that my biopsy report stated that the congregations of lymphocytes in the salivary glands examined numbered greater than fifty, which is absolutely diagnostic of Sjogren's. Even my primary rheumatologist in Denver, who was most skeptical about me having Sjogren's, completely changed his mind after my ENT did the lip biopsy.

I absolutely cannot continue seeing this doc. He would never support a disability claim because he doesn't think I am all that sick. And if I cannot stay on my meds or continue routine monitoring of my condition, Social Security could come to the conclusion that I have improved enough to go back to work, which is not the case.

I was concerned with the fact that my old primary rheumatologist had not sent the requested records. The letter made it sound like new guy thought I was withholding information intentionally. So I called Denver and found out the records department was in the process of a move and had every intention of tracking down the requested paperwork as soon as they were transferred to the new place; no conspiracy there.

The letter also contained mixed news about my new x-rays. Apparently, I have spurs in my mid-back, arthritis in the hips and disc degeneration at L5-S-1 that I didn't even know about. Despite this, the doc concludes that the cause is not Sjogren's but osteoarthritis and that my "discomfort" is primarily from fibromyalgia since he didn't find anything "severe".

So even when this guy actually finds something wrong, he still dismisses it! Well, gee, what a relief to find out all my previous docs were wrong! I think I'll just jump up and go run a marathon since I "only" have fibromyalgia!

What a tard! I would just laugh him off, except that he's a board certified rheumatologist with the power to convince the world I am not disabled after all. I have to find someone reputable that agrees with my previous docs ASAP.

Hence, I have made an appointment with a rheumatologist in a different office in two weeks. I will make sure she gets a copy of the elusive lip biopsy report if it's the last thing I do. Unlike the moron I saw last month who probably hasn't read a medical review since the day he got his degree, this rheumatologist studied recently at the Mayo clinic and probably has more up-to-date knowledge about Sjogren's and fibromyalgia.

I'm probably over-reacting, but that letter felt like a massive slap in the face. I can tolerate just about anything except being labeled a liar when I am trying my very best to be helpful and honest. I am extremely sensitive and defensive about not being believed by docs since I had to tolerate disrepectful treatment a multitude of times during the ten years I've been sick.

The very last thing I wanted when I moved was to have to start from the bottom to become a credible patient again. Why aren't seven years of medical records from highly informed and skilled medical professionals enough? Why do I have to do the ridiculous song and dance of "see, I really am sick" all over again?

More importantly, if "all" I have is fibromyalgia, why would eight doctors in Denver think otherwise? I guess I should be grateful Dr. Doubtful didn't accuse me of faking fibromyalgia too. If he had, he'd be a perfect candidate to perform those bogus exams for long-term disability insurance companies.

I'll stop here because my fake arthritis is causing fake stiffness in my hands.

Saturday, February 10, 2007

I do hope he's all right.... 

Good heavens! I was shocked to run across this in the headlines:

Elie Wiesel accosted at peace conference

This man is an inspiration to millions, including me. Why anyone would assault him is a complete mystery.

Rave of the Day for February 10, 2007: 

The webmistress for But You Don't Look Sick was interviewed for this blog entry on CNN:

Handling a friend's diagnosis

Thought this might be helpful to some of my healthy readers. Actually, it would probably be helpful to all my readers.

A yayyyyy and a nay...... 

I'll start with the good news first. My sister is expecting a baby in August! I've known for awhile, but she wanted me to wait a bit while before I announced it to the world, heh heh.

This is a big deal for her because she has severe endometriosis and had been undergoing fertility treatment. The docs were not terribly encouraging about her chances for success. So this is practically a miracle!

She is considered a high risk pregnancy, so she will be monitored closely. She's had a couple of ultrasounds already and has various procedures and docs lined up. She does not want to know the gender ahead of time, so we will all be surprised!

This is her first pregnancy. I do have two nieces from other family members. One is my sister-in-law's daughter who will be 3 at the end of this month, and the other is my stepbrother's daughter who will be 2 in April.

The not too exciting news is that I have another suspicious lump on my neck that may need to be removed or at least biopsied. This one just appeared out of the blue a week ago and has not gotten any smaller. I showed it to my primary care doc yesterday, and she referred me to a surgeon that I will see Thursday.

The most logical explanation is that this is another inflamed lymph node courtesy of Sjogren's syndrome even though I haven't had one before that looked quite like this. I had a large lymph node biopsied two years ago, and it contained damage caused by Sjogren's. Sometimes this disease causes non-Hodgkins lymphoma, hence the docs investigating suspicious swelling.

Chances are probably no more than 20 percent that it will be cancer, so I'm not terribly concerned. I'm mainly just cranky that I may have to have stitches in my neck again. I'm allergic to medical tape and steri-strips and get terrible itching.

I'll pop in and post about what the surgeon says.

Oh, and the primary care doc has referred me to a new rheumatologist. I'm hoping this one won't be a jerk like that last one.

Have other less momentous news to report, but it will have to wait because I'm once again too wiped out to type much more.

Sunday, February 04, 2007

Rave of the Day for February 4, 2007: 

I think I've seen this funny before somewhere, but I don't recall posting it. Thanks to my seester for forwarding it to me....

The $2 Bill. Everyone should start carrying them!

I am STILL laughing!!

I think we need to quit saving our $2 bills and bring them out in public.

The younger generation doesn't know they exist.


On my way home from work, I stopped at Taco Bell for a quick bite to eat. In my billfold are a $50 bill and a $2 bill.

I figure that with a $2 bill, I can get something to eat and not have to worry about anyone getting irritated at me for trying to break a $50 bill.

Me: "Hi, I'd like one seven-layer burrito please, to go."
Server: "That'll be $1.04. Eat in?"
Me: "No, it's to go." At this point, I open my billfold and hand him the $2 bill. He looks at it kind of funny.
Server: "Uh, hang on a sec, I'll be right back."

He goes to talk to his manager, who is still within my earshot.

The following conversation occurs between the two of them:
Server: "Hey, you ever see a $2 bill?"
Manager: "No. A what?"
Server: "A $2 bill. This guy just gave it to me."
Manager:"Ask for something else. There's no such thing as a $2 bill."
Server: "Yeah, thought so."

He comes back to me and says, "We don't take these. Do you have anything else?"

Me: "Just this fifty. You don't take $2 bills? Why?"
Server: "I don't know."
Me: "See here where it says legal tender?"
Server: "Yeah."
Me: "So, why won't you take it?"
Server: "Well, hang on a sec."

He goes back to his manager, who has been watching me like I'm a shoplifter, and says to him, "He says I have to take it."
Manager: "Doesn't he have anything else?"
Server: "Yeah, a fifty. I'll get it and you can open the safe and get change "
Manager: "I'm not opening the safe with him in here."
Server: "What should I do?"
Manager: "Tell him to come back later when he has real money."
Server: "I can't tell him that! You tell him."
Manager: "Just tell him."
Server: "No way! This is weird. I'm going in back."

The manager approaches me and says, "I'm sorry, but we don't take big bills this time of night."
Me: "It's only seven o'clock! Well then, here's a two dollar bill."
Manager:"We don't take those, either."
Me: "Why not?"
Manager: "I think you know why."
Me: "No really, tell me why."
Manager: "Please leave before I call mall security."
Me: "Excuse me?"
Manager: "Please leave before I call mall security."
Me: "What on earth for?"
Manager: "Please, sir."
Me: "Uh, go ahead, call them."
Manager: "Would you please just leave?"
Me: "No."
Manager: "Fine -- have it your way then."
Me: "Hey, that's Burger King, isn't it?"

At this point, he backs away from me and calls mall security on the phone around the corner. I have two people staring at me from the dining area, and I begin laughing out loud, just for effect. A few minutes later this 45-year-oldish guy comes in.

Guard: "Yeah, Mike, what's up?"
Manager (whispering): "This guy is trying to give me some (pause) funny money."
Guard:"No kidding! What?"
Manager:"Get this .. A two dollar bill."
Guard (incredulous): "Why would a guy fake a two dollar bill?"
Manager: "I don't know. He's kinda weird. He says the only other thing he has is a fifty."
Guard: "Oh, so the fifty's fake!"
Manager: "No, the two dollar bill is."
Guard: "Why would he fake a two dollar bill?"
Manager: "I don't know! Can you talk to him, and get him out of here?"
Guard: "Yeah."

Security Guard walks over to me and......
Guard: "Mike here tells me you have some fake bills you're trying to use."
Me: "Uh, no."
Guard: "Lemme see 'em."
Me: "Why?"
Guard: "Do you want me to get the cops in here?"

At this point I am ready to say, "Sure, please!" but I want to eat, so I say, "I'm just trying to buy a burrito and pay for it with this two dollar bill."

I put the bill up near his face, and he flinches like I'm taking a swing at him. He takes the bill, turns it over a few times in his hands, and says, "Hey, Mike, what's wrong with this bill?"
Manager: "It's fake."
Guard: "It doesn't look fake to me."
Manager: "But it's a two dollar bill."
Guard: "Yeah?"
Manager: "Well, there's no such thing, is there?"

The security guard and I both look at him like he's an idiot, and it dawns on the guy that he has no clue.

So, it turns out that my burrito was free, and he threw in a small drink and some of those cinnamon thingies, too.

Made me want to get a whole stack of two dollar bills just to see what happens when I try to buy stuff. If I got the right group of people, I could probably end up in jail. You get free food there, too.

Just think...those two will be voting soon.............................

Saturday, February 03, 2007

Rave of the Day for February 3, 2007: 

There are lots of articles I've run across lately in other people's blogs that I'd like to share, but I've lacked the energy to get to all of them. This one, however, jumped out at me because I think it should be posted as a public awareness service. It also bolsters what I've said here about the problems I've had with my own LTD company.

If you own a Long-Term Disability policy, there are facts you need to know!

BTW, thanks to My Social Security Disability Blog for the link (check my links list to visit this excellent site).

Friday, February 02, 2007

Crashing 101 

Haven't posted much lately about what's going on with my health. There are a few reasons for that, the main one being that I don't have any real improvement to report. The other big reason is that when I crash, my brain is usually too fogged in to allow me to relate the fact.

Those who know me well are familiar with my seemingly endless cycles of illness exacerbation and (sometimes only slight) recovery. But to those of you who are new or have forgotten, most people with autoimmune disease and/or fibromyalgia have bad days and somewhat better days. Unfortunately, the rare days that I feel good are usually ruined by my insistence on overdoing whatever I feel well enough to do.

What happens is this: let's say I wake up one day with lower than usual pain levels and some actual energy. My excitement about feeling relatively good is tempered somewhat with the knowledge that it has been days, weeks or months since I felt this well, and I feel almost a sense of panic that I won't be able to make this time worthwhile before I am overwhelmed by illness again. So in celebrating a bit of good health, I also try to catch up on the things I've been longing to do but have been too ill to accomplish.

You can probably already see where this goes. I might run extra errands while I'm already out, or go to a movie I've been dying to see, or socialize, or maybe take pictures. And in spite of enjoying myself immensely and thinking that it was all worthwhile, I can't help but be a least a little disappointed when I crash.

And crash I do, sometimes even when I haven't intentionally engaged in too much activity. I'm stuck in bed, unable to get up no matter how much I want to. Or even if I manage to get up, I can't put my thoughts into any logical sequence well enough to do much of anything except passively stare at a television screen (and even then, I can't concentrate well enough to watch anything with a plot).

I never know how long a crash will last. Sometimes I'll feel a bit better the next day, but I've also had exacerbations from which I have NEVER completely recovered. That knowledge makes me timid, sometimes too timid to dare to enjoy myself, which of course sets me up for wanting to overdo it again the next time I have the chance.

Where am I going with this? I must honestly say I have no idea. That's because I'm presently in a crash and burn phase and can't remember what my point was.

The aquacise class I started last week has been harder on me than I expected. I got through the first week with the usual increased tiredness, but then on Sunday night, all of a sudden the sledgehammer of autoimmune fatigue walloped me but good, and I swear it was like my brains slid right out of my head. I crawled into bed so messed up I could barely form a sentence.

Woke up on Monday still extra tired but more functional, so I went to aquacise again, and did feel better for a bit before a mini-crash Tuesday night. But I know I desperately need the exercise, so I returned to class on Wednesday even though I was kinda sore from Monday. Stayed home on Thursday hoping to recover from Wednesday's class, but it didn't help much.

Could not get out of bed at all this morning until after 11am, so I really had to rush to get to the class at noon. The fuzzy-headedness improved for about 20 minutes, then came back with a vengeance for the second half of the class. Drove home feeling as though vampires had completely drained me of blood.

And that's where I am tonight. It has taken me over an hour I think to type this because I am transposing letters in nearly every word and have to keep going back and staring at my fingers try to remember the proper order the letters go in. Welcome to my world; can you believe I was once an intelligent and creaative writer??

If you were able to make sense of this, congratulations, because I can't seem to. But I will promise to try to not make too many entries when I am in this state, even if it means my posts are fewer. It's embarrassing when I must struggle so hard to express myself.

Can't think of a good way to finish this, so I'll just stop.

Thursday, February 01, 2007

Rave of the Day for February 1, 2007: 

Thought the following would be food for thought, even for my readers who aren't religious. Thanks to Joan for sending it....

Best Prayer I Have Heard In A Long Time...

Heavenly Father, help us remember that the jerk who cut us off in traffic last night is a single mother who worked nine hours that day and is rushing home to cook dinner, help with homework, do the laundry and spend a few precious moments with her children.

Help us to remember that the pierced, tattooed, disinterested young man who can't make change correctly is a worried 19-year-old college student, balancing his apprehension over final exams with his fear of not getting his student loans for next semester.

Remind us, Lord, that the scary looking bum, begging for money in the same spot every day (who really ought to get a job!) is a slave to addictions that we can only imagine in our worst nightmares.

Help us to remember that the old couple walking annoyingly slow through the store aisles and blocking our shopping progress are savoring this moment, knowing that, based on the biopsy report she got back last week, this will be the last year that they go shopping together.

Heavenly Father, remind us each day that, of all the gifts you give us, the greatest gift is love. It is not enough to share that love with those we hold dear. Open our hearts not to just those who are close to us, but to all humanity. Let us be slow to judge and quick to forgive, show patience, empathy and love.

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