Tuesday, April 29, 2008
There was the case in the Pacific Northwest wherein the parents of adopted disabled children kept them in kennels and underfed them. There was the story about the girl in Austria who was held captive for eight years in a secret room under a well-manicured suburban home. In Texas, Arizona, and Utah, a polygamist religious group with cult-like beliefs has been engaging in widespread acts of what can only be described as wholesale incestuous fornication with children.
What is wrong with these people? How in the world do they pull off these horrors of human manipulation while family members claim to have been oblivious?
The latest story is also out of Austria and it so creepy, so wrong, so warped, it seems impossible, and yet, it's not. Josef Fritzl kidnapped his own daughter, kept her prisoner underneath the house she grew up in, and fathered seven children with her. And nobody caught on for 23 years. Either this guy in one hell of a sociopathic liar, or the rest of his family lives deep in denial. Or they're stupid. Fritzl has reacted as nonplussed, arrogant, and unapologetic. He said he felt he had the right to abuse his daughter.
This story is so sick, it makes my skin crawl. Fritzl is just too twisted to be real. I hope his stay in prison is painful, humiliating, and brief (as in, he gets smacked, packed, and whacked). There is something very, very wrong with humanity.
Monday, April 28, 2008
My goal isn't to be organized. No, my goal is always the same: To avoid discomfort. Some people say that necessity is the mother of invention, but I contend that discomfort avoidance is doing the true heavy lifting.
I am that person. You know, that person at work who has what you need: A safety pin, tampon, toothpaste, Advil, paper plate, dish soap, antacid, fork, paper towel, plastic bag, floss, mint, hem tape, hair pin, eyeglass cleaner, air freshener, thank-you note cards, chocolate, band-aids...
I am not all that organized. Case in point. On Saturday morning, I left the house for the day only to get a call from my husband who had been out walking the dog when I left.
"May, did you know you left the front door wide open?"
"Huh? What? No. I mean, huh, yeah, I guess so. Sorry. If it's any comfort to you, I've only been gone about five minutes (it was actually 15. Shhhh.)."
"Oh, May. May, May. Sigh."
The next morning, I went downstairs and realized, much to my horror, that the night before I had not only left the iron plugged in, I had left it turned on. High heat. Good thing it has that auto-off feature. He he.
I got myself together and went out to the car. That's when I saw that I had left my car unlocked and the windows down all night.
Yeah, organized. Let me know what that's like. In the meantime, I live constantly muddled. Maybe it's lithium. Maybe it's middle age. Maybe my brain is full. Should I be driving?
Friday, April 25, 2008
When someone says I'm intense, it's usually a euphemism for "May, you're spinning off into the stratosphere again." A hypomanic brain requires some keeping up with. From the outside, it looks chaotic: a mouth that doesn't stop, sleep that never comes, thoughts that go into new and sometimes fascinating places.
The first time my so-called intensity got totally out of control, George W.Bush had recently been elected. In the months leading up to the election, I was consumed by anxiety that the candidate who embodied everything I detested would be elected. Worse, the other candidate, Al Gore, would not be elected solely because the incumbent had an affair that, although it had absolutely nothing to do with running the country or working in service to the American people, was treated with moral judgment that was elevated to tabloid-like fervor. People actually believed that getting a blow job was akin to breaking the law. It made me stay awake at night and kept my brain spinning in a frenzy of fear related to having neo-conservative hawks massacring the Constitution and marching the country's population into something akin to a far right-wing cult.
When Bush was elected the first time, I spent hours and hours on the Internet stoking my fear by visiting Websites that spoke of conspiracy, diminishing human rights, plots to strip the American people of their privacy, conservative social control, and worse. I printed out articles and emailed these harbingers of doom to everyone I knew. Daily. At least. It was making me physically ill. I was consumed beyond reasonable involvement for even the most concerned of citizens. A lot of my fears came partially true, but since it happened when I was in a rational state, it didn't rock my world at all.
I abhor the current administration, though. I'll be relieved when it's over.
Another thing to know is that I am an avid NPR listener. Or was. Most of the last year, NPR was cranking out an overwhelming number of stories about all things Iraq-related. It was getting to be much too much, and then election issues started to crowd out the Iraq stories. The anxiety was coming back. My impatient intolerance started reaching maximum levels very early on. Now, when anything related to Barak, Hillary, or John comes in, I just turn it off. Off, off, off. I can't listen. I'm not disinterested, just anxiety stricken. I can't face the thought of getting caught up in the obsession fueled by worry and hypomanic distortion. I was out of control once, and I owe it to myself and all of the people who know me to manage my behavior appropriately this time around.
This is a very typical coping strategy for those who are faced with bipolar triggers. We tend to latch onto an issue and grow to show an unhealthy, unreasonable, and obsessive interest in things such as politics. For me, it became a tendency to want to warn everyone of the dire consequences of allowing Bush, Rove, and associates to continue unchecked. I overwhelmed myself and everyone around me.
I can't listen to the news this time around. I change the radio station. I cancelled my newspaper, I mute the TV. I am too BP to risk the emotional upheaval and triggered behavior that comes with this particular topic.
I still vote, but I find it a much more rational process if I carefully control the flow of information coming into or out of my head. And in the end, it's all about the in-and-out-of-my head that matters most. Still, it makes me feel very defective because I have a disorder that forces me to change my ability to manage everyday things, including some that I love.
Wednesday, April 23, 2008
I still can't wear a bra, still can't wear fitted clothing, still can't sleep on my back or right side, still can't exert myself very much, still have a big puffy spot on my back.
I'm starting to get depressed.
What a cheery blog Brainucopia has turned out to be.
Monday, April 21, 2008
As Americans, we expect a lot from ourselves. We view illness as a weakness that takes us out of the esteemed loop of productivity. Illness is not acceptable in our culture, but not because of the discomfort and suffering it brings. I think if you were to really probe most people, they would reveal their true belief: Whatever it is, you really need to just get over it and get on with whatever work it is you contribute to the country.
Our culture does not tolerate sickness. It is during serious illness that you are likely to find out who your true friends aren’t. People may ask how you are, but they don’t want to know. If you’ve had whatever it is for more than a month, those around you have already lost patience with it. Compassion is not what we do best as a society, at least, not in terms of managing illness, not even by those who practice medicine.
In the late 1990s, a large wave of Bosnian refugees was settling into life in the U.S. Bosnians lived comfortably before the war, and most had never known a life without socialized medicine. Despite the country’s other problems, the healthcare system was excellent. Many Bosnians fled to Germany during the war and received additional excellent medical care. I remember one woman who injured her shoulder about nine months after she arrived here. She was told that to avoid surgery, she needed physical therapy and to wear a sling for a month, but otherwise, she should go about her normal activities. A week into her problem, a Bosnian man she knew stopped by her office and said, “Ah, well…If we were back in Bosnia, you’d have pain medication and a month off of work with pay.” They both sighed and nodded silently with nostalgia. They understood what it meant to be treated like a patient instead of like a liability.
When my mom had surgery last week, I was surprised she was scheduled through the day surgery unit. The procedure is not uncommon, but it is quite intricate and invasive, and the recovery is slow and painful. My mother is 71 years old and she is not physically fit by any means. She suffered a transient ischemic attack a few months ago, otherwise known as a mini-stroke. She was kept in the hospital for about 20 hours and released when her vital signs appeared to be stable. No further observation was deemed appropriate. For a stroke. The ER bill was $5,000.
In the wake of that TIA, Mom tripped and fell in her living room, which lead to a rotator cuff tear. The tear worsened with time, and eventually required surgery. The surgeon looked at the MRI results and diagnosed the injury as being “significant.” He said that the joint needed extensive repair affecting several different areas of the joint.
Despite the serious nature of the surgery, the insurance company still felt there was no reason for my mother to be admitted to the hospital for an overnight stay. Instead, the hospital requires the patient to bring a designated caregiver. From the time the patient goes into the operating room, the caregiver is bombarded with instructions. Here is the beeper. You will be paged three times. The first time, you will go to Room B and meet with the surgeon who will review the results of the surgery. The second time, we will let you know that your loved one has been moved to the post-op room. The third time, you will pick up a call from the waiting room phone and receive instructions before you go into the recovery room to wait for your loved one to be discharged. Return the beeper after the third call.
Once in the recovery room, you sit with your loved one, but not to keep him or her company. Your role at this point is to get a crash course in nursing and post-operative care. You will be immersed in instructions and details coming from at least three people, who will fill your arms with illustrated handouts and bullet-point to-do lists. There is an assumption that as the person accompanying the patient, you are qualified and willing to provide this care.
I waited for my mom’s blood pressure to come up to a normal range and leafed through the papers. My head was swimming. So many do’s and don’ts. I had to get up to speed very quickly on the mechanics of a Stryker pain pump and familiarize myself with the steps for its removal, catheter and all. I had to review the steps for removing and replacing a sling, removing surgical dressings, cleaning the wound area, redressing it, and keeping it sanitary. I was expected to know how to apply a post-surgical icepack collar, how to sponge bathe the patient, monitor medication dosages and pain relief, ensure adequate fluid intake, and watch for signs of infection or blood pressure changes.
In addition, I had to figure out how to dress and undress the patient without jostling the immobilized arm. I was expected to know what foods she could tolerate and which would be problematic with the medications and side effects of anesthesia. I was somehow supposed to understand the mechanics of getting my mother in and out of the recliner, on and off the couch, in and out of bed, and to and from the toilet. I applied lotion to her arms and legs, and powder to her chest and breasts which were being rubbed red by the sling. I analyzed that problem and came up with a solution to pad the sling. I cleaned up vomit and blood and did laundry. I created a “breakaway barf bag” that hung on a TV tray and was rolled open in a way that prevented it from collapsing closed.
I received no training for any of this, only a pile of photocopies and some rushed verbal instructions amidst a whirlwind of recovery room activity. I have a master’s degree in Language, Literacy, and Culture, not nursing, and yet I was supposed to just know what to do once we pulled out of the hospital’s parking garage.
In between the patient care activities, I did all of the things one actually expects to do when helping a loved one after surgery. I made repeated trips to the pharmacy and the supermarket, as well as to the post office and various other errand-oriented locations. I made calls—to the doctor’s office, to my office, to my mother’s workplace, to the pharmacist, to my mom’s Internet Service Provider. I answered the phone and gave patient updates to those who needed the information. I opened mail, unwrapped plastic-bound magazines, and I cooked. I did more laundry. I washed dishes, cleaned the bathroom, changed the kitty litter, took out the trash and recycling, vacuumed, and mopped the floors. I fixed my mother’s computer and updated the software and virus scan utilities, a process that took hours and went very late into the night. These tasks were not at all problematic because I knew what I was supposed to do and any minor missteps would cause no harm. But hands-on patient care? Medical waste disposal? Catheter removal?
The care I gave my mother in the 72 hours following her surgery should have been happening in a hospital and tended to by professional nurses, LPNs, and med techs. What kind of ethical deficiency allows our medical system to operate this way? Who considers this to be an adequate level of care? How is it seen as safe to leave such intricate measures in the hands of an untrained family member? What happens to those patients who don’t have anyone to assist them in the days following surgery? Are they expected to just fend for themselves?
Our medical system and insurance companies have made it very expensive and difficult to access the care we need. Being insured does not guarantee that you’ll actually get sufficient medical attention. You will get whatever the doctor feels is least likely to be questioned or whatever the insurance company has determined is the most cost-effective treatment for the least amount of money possible.
My mother has insurance. In fact, she has very good coverage, plus AFLAC and a comprehensive prescription plan with flexible spending benefits. If this is what you get with insurance, then I want to know what the money we pay in premiums and copays is being used for. Those of us with insurance usually pay thousands of dollars per year for what we believe is enough coverage to ensure adequate care when we are sick. It appears, though, that our thousands of dollars are not being held for our rainy day, but rather for someone else’s opportunity to invest in the stock market.
Again, though, it’s not about the money. No, this is about the ethical considerations of healthcare. I want to know where those ethics went and why potential patient endangerment is considered a risk worth taking when weighed against the cost of providing a full course of necessary treatment. The people who make these decisions are obviously soulless, hollow beings. The fact that their decisions may be of no help to the patient are completely irrelevant because these people believe that policy should be dictated by statistics and not by the needs of sick people who pay hard earned money to buy insurance that will ultimately fail them.
Sunday, April 20, 2008
Holy crap, I'm exhausted. My shingles pain flared with a vengeance on the plane. Not sure what that's all about. Shortly after that started, I began shivering terribly. When I asked the flight attendant for a blanket, she looked at me, did a double take, and came back with two blankets followed by a cup of hot tea. I must have looked bad.
You know, I went back and looked at the post I did while deeply under the influence of Ambien. Besides the fact that I repeated myself, I was amazed by the radical deterioration of my typing abilities. Yikes.
OK, I am exhausted and all time-zone wacky. I need to lie down until I can think of something to say. I have an overwhelming three weeks ahead of me, and my job now is to figure out how I'm going to make that work. I also want to ponder how to write my thoughts about Wal-Mart. I spent quite a bit of time there this past week, and well, I just had some observations that will probably sound snide. Maybe more than probably.
May's brain is crispy now and she fears that given any more pressure, said brain will erupt in an ugly Bipolar Backlash. Hey, that would be a good name for a band.
What the hell was I just talking about again?
Saturday, April 19, 2008
I got on the phone and had her doctor paged. He prescribed Vicodin (ha!) and some kind of anti-nausea in suppository form. OK, there are definitely points where I only go so far in my in my nursely duties.
The surgery itself went well, but it was an extensive repair and therefore painful. I just don't see how she's going to get through this without help.I'll call her insurance on Monday and see if she can get a home health aid.
OK, I've taken my meds and I'm visibly swaying. Off to bed. More later.
Friday, April 18, 2008
She keeps this house so damn dark I have claustrophobia. I mean, the wood blinds are kept closed, the windows are closed up tight, the vertical blinds are drawn...I feel like I'm suffocating. I don't like air conditioning as it is, but to not be able to see outside is just maddening.
My mother needs a lot of help, and I don't see how she's going to take care of herself after I leave. I sent an email to my siblings, but so far, the silence is deafening.
If I could afford it, I would hire Molly Maids to come in and give this place a good, thorough cleaning. It's disgusting, and my mother can't take care of it. She had the rotator cuff injury since last September, and the house really hasn't seen much care since then. I am not all that well myself, and my shingles pain flared up a lot today. I'm going to do what I can, but it won't be sufficient.
I have no idea what I'm doing, and don't know where to begin.
Wednesday, April 16, 2008
If the guy in the seat in front of me leans back any further, I’ll be cradling his head in my lap. Or slapping him upside the head.
My back is killing me. Two hours and 10 minutes to go.
Totally unrelated side note: I just realized that although it may seem kind of sick, I launched iTunes and just clicked on a random album to listen to. It’s America: A Tribute to Heroes, a CD produced in the aftermath of the 911 attacks. Perhaps an ironic choice for flying, but it’s actually an outstanding collection of performances. At the moment, though, Wyclef Jean is singing, and frankly, I can’t stand Reggae.
I woke up in deep pain. I felt like someone had stomped on my liver during the night, and my ribs had joined in the assault.
My mother called at 7:00 and my husband answered the phone. I heard him say, “Well, she’s doing better, but this flight—with a connection—is gonna kill her. She’ll need to rest when she gets there.” He wished my mother well on her surgery and handed the phone to me.
“Hi, Mom. I’m just finishing my packing. Are you all ready to go for tomorrow?”
“Yeah, yeah. I had all of my pre-op stuff done yesterday. I’ll tell ya, I love that hospital. It’s a great place. Everybody is so nice there”
I stopped packing for just a second, a small pile of soft camisoles suspended in mid-air above the suitcase. Had she really just said that? This was the hospital where my father went for plasmapheresis and was pronounced incurable. How many hours had we spent there? How many days taking turns sitting in the one uncomfortable, vinyl-covered chair at the foot of the bed? Wasn’t this the hospital she railed against when my father was moved to a nursing home without my mother’s knowledge? When I pictured this hospital, I had nothing but memories of frustration and sadness. Why didn’t she remember things the same way? She never does.
She asked how I was feeling. I said, “I’m looking forward to spending several days doing as little as possible except tending to your post-surgical needs. I’ve been pushing the boundaries of reasonable activity and I’m not up for much more.”
My mother’s reply was quick and I could tell she was laughing for the benefit of the people in her work area who could hear the conversation. “Oh, I have a whip list—I have a whole list of things for you to do when you get here—things that I need done. I’m going to keep you busy.”
My husband saw the look on my face and cocked his head in concern. I tried not to scream something obscene into the phone. How could she still not be getting the message that my health is in a fragile state right now? Didn’t she understand, despite being told, that I shouldn’t even be making this trip? Apparently not.
“Well, Mom, if it involves lifting, twisting, bending, or exertion, I can’t do it.” I wanted to say, “My very able-bodied firefighter brother and his cop friend were just there three weeks ago. What was on their to-do list?” I already knew the answer so I didn’t bother to ask. I let out a sigh and told my mother I had to get back to packing if I planned to make my flight on time.
When I told my husband about the conversation, he did something he never does: He put his arms around me and gave me a deep hug. “I’m sorry honey. I’m sorry you have to go, and I’m sorry your mother just doesn’t get it. I’m sorry.” He recalled that I had once told him that as a child, I was only allowed to stay home from school if I had a fever or was throwing up. While at home sick, my sister and I were expected to get some chores in instead of just “wasting the day.” I remember once when I was on day three of the flu, my mother came home from work and exploded because I hadn’t dusted, vacuumed, or started dinner. I said, “But Mom, I was lying down. I’m sick,” and she shot back, “You’re not that sick.” I was 12.
And so, after getting off the phone, I finished packing and headed off to the airport. I must say, “troubled” must be written all over my face today. The TSA workers were exceptionally nice to me today. Even the guy who checked my ID looked at me, looked at my boarding pass, winked, and said, “Oh, off to better weather, huh? I just know you’re gonna get in some beach time. Maybe some Margaritas? That’ll shake off the last of winter, huh?” I tried to smile, and thanked him as he wished me a fun trip. “If you only knew…”
Once I entered the plane, I was looking down, dejectedly, hoping for a decent seat (Southwest doesn’t assign seats). The male flight attendant at the door dipped his head down low so he could make eye contact, smiled, raised his eyebrows, and welcomed me aboard. He could just as easily have skipped it and said hello to the next person. When he brought my snack (graham crackers! Sweeeet!!!), he gave me funny look meant to make me smile. It had limited success.
As it turns out, I have my precious window seat, but over the wing where the ride is not so bumpy and my body won’t feel so buffeted by any turbulence. By some stroke of very good luck, there is no one sitting in either of the other two seats next to me. This is good since while writing this I just had a little crying outburst. I tried to be quiet about it, but had someone been sitting next to me, that would have been embarrassing.
Next stop Chicago.
Tuesday, April 15, 2008
I plan to keep in touch with my blog journal. It may be the key to my happiness.
In the meantime, I'd like to share something with you. The AdCouncil produced a series of Public Service Announcements about the importance of friends to a person suffering from a mental illness. I like it, especially the one on the subway platform (abandoned building??). It's perfect.
Mental Health Anti-Stigma PSA - Door Knob
Mental Health Anti-Stigma PSA - Friends
Mental Health PSA
Sunday, April 13, 2008
It's late. It's past bedtime. I've always been nervous in the dark, but I can't sleep if there's any light in the room. When my husband is here, I'm OK. (Although, I must mention that last week, the cat crashed a lamp off of an end table, shattering the bulb. I sat bolt upright in bed--Sophie kitty, too--while husband and Sparkled never stirred. I thought, "must be an Ambien thing. I hallucinated. The cat reacted to me.") My point being, having a husband and a dog is not the same as an ADT security system.
My husband is not here. He's on a plane that at this time is approximately over Omaha. He won't get home until 1:00 or so. That's A.M. I probably won't sleep until then. Even if I do, I know my heart will jump out of my chest when he opens the door because the dog will go ballistic.
How did I manage to live alone for all those years?
My house creaks a lot. I looked outside--it's not windy. Little freaked out.
My husband has not-so-latent OCD. He does things the same way at the same time in the same order every day. He is brand faithful, to put it mildly. He has social anxiety. He is vigilant about all potential problems at home, and he is convinced that I, with my much breezier attitude, am going to burn the house down if he looks away for just one minute.
My husband thrives on routine, structure, and predictability, whereas I tend more to the impulsive if not the chaotic. We balance each other perfectly.
My husband is away this weekend, so I have had some much-needed peace and quiet. Weekends here are not relaxing unless you enjoy the sounds of home improvement. Of course, this meant that I had to tend to the day-to-day tasks like washing dishes, weekend laundry, feeding the pets and walking the dog. Ah, walking the dog.
When I adopted the dog 2 ½ years ago, I assured my husband that I would be her primary caretaker. On our fifth morning outing, I suffered a bit of a mishap. The dog (we’ll call her Sparkle because the stupid name the shelter pegged her with) is a purebred Border collie. Border collies are known for being brilliant, highly trainable, fast, very active, and insane when in close proximity with any round, flying object.
And so it was on a sunny September morning that I learned why some dogs are not compatible with a retractable leash. Sparkle and I were walking around the park when a man with three Border collies waved at me from about 100 feet away. Sparkle and I crossed the grass and the guy said, "Wow. That is a good looking dog. Is she all Border collie?” I assured him she was. He stood up from petting her and casually tossed the ball he was holding. His dogs ran in the direction of the ball—and so did Sparkle. Great, except Sparkle was still on her leash. In less than a second, all 12 feet of the leash flew out of its canister, and when there was no more leash to unleash, the laws of physics kicked in.
My arm jerked forward, hard, and I was pulled up onto my toes. From my tiptoes, I was pulled forward as I went slightly airborne. I belly-flopped onto the soaking wet grass and I realized that I was still moving. Behold the power of the Border collie. In her pursuit of the ball, Sparkle managed to drag me for at least ten feet across the grass. I let go of the leash and checked myself for major orthopedic injuries.
It looked like my powder-blue warm up pants took the worst of it and had become a situation worthy of a Tide commercial. The guy with the dogs helped me and said, “Oh, I’m so sorry. Are you OK? If this weren’t so serious, I would have to laugh—that was spectacular. Are you sure you’re OK?” I assured him I was. It took us ten minutes to wrangle Sparkle, who now had no intention of getting back on leash if there was a ball to be caught.
I limped home. Seven years ago or so, I had knee surgery wherein a great deal of the cartilage behind my right kneecap was removed. As a result, I must avoid impact to my knee. Having just sustained a significant impact, my knee immediately swelled and sent searing pain shooting through my leg.
My husband has been the dog walker ever since. It’s not that I’m unwilling, but my husband is convinced that I am too uncoordinated to avoid a second round of surgery.
As I puttered around this weekend, I took a certain amount of pleasure in not having to indulge my husband’s OCD tendencies. I used the long cycle on the dishwasher and opened the door halfway through (grin). I did two loads of laundry without cleaning the lint filter in the dryer between loads. I turned on a lot of lights (ha!), and I made up my own meandering route when I walked the dog.
My husband and I have argued about this before. He takes the same exact route, in the same exact amount of time, every single day—twice a day on weekends—although he adamantly denies this. I, on the other hand, think it’s more interesting for me if I make up the route as I go. I also believe that it’s better for Sparkle both in terms of mental stimulation (BCs need that) and to familiarize her with more than one way to get home, should she get lost or abducted.
The dog was confused less than a block from home. She kept pulling one way and I would go another. The thing about a BC is, once they learn a behavior, they expect it to always be the same. I could see that my husband hadn’t been varying his route, after all. If he had, Sparkle wouldn’t be trying to do something contrary to her handler’s cues. I kept reassuring Sparkle that change was good and variety really is the spice of life.
When we went out today, I decided to let Sparkle show me what she knows. My husband is so busted. I never had to give a command or tug on the leash. Sparkle led the way with confidence and determination. She was all business, and she even showed me where she crosses the intersection on the diagonal, which street she crosses in the middle of the block, where all the dogs are hiding behind privacy fences, and where we should cut across the soccer field in the park. I was amazed by the precision of her routine.
Now that I think about it, a Border collie was the perfect choice for my husband, given his need for structure and repetition. Did I mention that Border collies are prone to OCD? At our house we call it, "Sparkle's caught in a loop again."
Sparkle is a working dog…if only we could teach her to do things like clean the bathroom and use the vacuum cleaner, she'd be worthy of that title. Oh, that’s right. She’s afraid of the bathroom and she keeps trying to kill the vacuum…
Friday, April 11, 2008
Oh, no, I've lost my mind. Now where did I put...What was I looking for?
And nothing will happen
Let them leave you behind...Let go... just let your mind wander...
Over houses and roadsides
Over planes in the sky
You are so tired, you cannot sit down
You just pace on the floor
With your cigarette smoke angels above you
Stop... all the hoping and waiting the while
Let the hunger and hating sit down
And be nothing but air in a big, empty room
It's good... good enough to just sit there in peace
And the world can go right on without you
And forget what they want you to be...
Let go... you don't have to be anyone
© Amy Tiven/BMI
After therapy today, this song kept trundling through my head. I hadn't seen my therapist in two weeks. When I saw her last, I was lamenting the fact that I couldn't function because of searing back pain. I told her today that I've been struggling with this shingles outbreak. I told her that she, harbinger of doom and warner of dire consequences, had turned out to be right. I pushed myself too hard and it came back to bite me. She's been warning me that something was going to happen because I've been going beyond pushing myself and moved on into shoving.
My therapist wanted to know what I thought about this. I told her that I should have seen it coming. She wanted to know what I was doing to take extra-special care of myself during this difficult time. Uuuuuuhhhhh.....
She let out an exasperated sigh. "May, this is serious. Call your mother and cancel Florida. Stop going to work for a few days. Stop, stop, stop. Don't get my hopes up by telling me you made arrangements to work half-days and in the next breath tell me that you've been staying at work anyway."
I thought for a moment and said, "I am afraid to stop. I am afraid to do less. I am afraid that people will see I am not doing everything I am capable of. I am afraid they'll think I'm lazy or using the illness as an excuse to snag some free time. I am afraid of not being enough."
She stared at me, stunned. "May, are you kidding me? And why do you care what people think? You are sick. You need rest. Can I say it again? You need rest. Why do you think work is more important than your health? Your immune system is stressed out. If you don't do the right thing now, you could pay a much higher price later. May, honestly, why don't you think you're worth it?"
I couldn't answer her question, but she had correctly identified the core issue. I told her I had been ruminating on this topic for a week. It was as if I were compelled beyond my own desire and forced to just keep going as far as I could. I said, "I am afraid to stop."
She said that she has seen people push themselves relentlessly and then pay with their health. Heart disease, recurring illness, and cancer were some of the stress-related conditions that had been attributed to this type of self-denial. Didn't I care about that?
"I said it before, and I'll say it again: Death does not scare me, but I really hate to suffer. I want all or nothing. No time-outs."
"May, May, May. You need to think about this. You're courting disaster. How are you going to change your life now that you've seen what happens when you put your own well-being last?"
I told her that despite all of my soul-searching, I just didn't know. And the truth is, I don't. I really do think that I'll be written off as an incompetent flake if I give up any of my current responsibilities or projects, and then I won't have credibility ever again. I also care a lot about what becomes of the work I've started. I can't trust anyone else to do what I do or do it as well. It's not arrogance, it's just the truth.
I don't love myself. I barely tolerate myself. How can I possibly give myself permission to be less than I already am when I know I should really be much more?
I really don't know what to do.
Thursday, April 10, 2008
That being said, today's evaluation is...I feel like someone is stabbing me in the back while simultaneously breaking my ribs.
I need to get dramatically better within the next five days or else my trip to Florida is going to be hell. It will probably be hell, anyway, but I need health on my side so I can survive this task of being my mother's post-op nurse for 4 1/2 days. She wears me down under the best of circumstances.
Favorite Mom quote from fall, 2006, when I was severely depressed: "You're taking all these medications but you're more screwed up than ever! Are you trying to get better?"
Wednesday, April 9, 2008
I think for the next week-and-a-half I'm going to work from home in the afternoons. This is my (probably) lame attempt at scaling back while I recover from shingles. Everything I read says this:
- Shingles is opportunistic. Prolonged stress is a primary trigger.
- Shingles is not only an illness but a symptom of a life out of balance. You push too hard, the body pushes back.
- It is critical to rest and rest a lot while going through a shingles outbreak. The immune system is very stressed at this time. Not resting almost guarantees postherpetic neuralgia.
- Getting this sick is a wakeup call telling me I need to eat better, rest more, work less.
I wonder about us. Why do we work so hard that illness spots opportunity in us? Is this nature’s way of smiting us for shrugging off the concerns expressed by others? People tell me I do too much, I’m pushing too hard, and I’m overextended. I know this, yet I refuse to admit it could have any meaningful consequence. And then…I get shingles, you get pneumonia and then pertussis. Damn. I go to work after a trip and come home with enlarged lymph nodes on the right side of my body. I hate it when I’m wrong about my immunity to health consequences.
I started thinking about this when I looked at an email of funny pictures of men doing moronic things on the job. I thought, “I’m sure they say, ‘nothing’s going to happen. I’ll be fine. Let me just finish this one thing….'” And then we fall off the ladder. The last time I fell this hard, my brain disconnected from rational thought and it became obvious my brain was defective.
Hmmm. I am trying to listen to the wakeup call. I am trying to let my body tell me what it needs. I was surprised how many serious articles said that rest, yoga, deep breathing techniques, Tai Chi, meditation and other similar activities are often prescribed post-shingles. What? I need to meditate? I need to do what New Age crap? Me??
I hate the thought that I’m not Superman. You know, like that Five for Fighting song you used to remind me about. How will I live if I can’t maintain my usual unrealistic high expectations of myself?
Do you feel smacked down by cosmic health forces?
My friend replies...
It is not being able to exclude people from my world that makes me sick. I don't know how else to explain it. If I am doing my own thing, singularly focused and happy just for the moment (and 'happy' is relative as you know), I'm fine and I enjoy life. My immune system goes haywire when I'm forced to deal with the outside world. It is like I take on the energy of the drama. Hard to describe, but I generally have to regroup (and getting pneumonia and pertussis forced me to do this), and decide to focus again on self.
Your body, just like mine, is saying 'enough, enough, enough.' I think our whole physical organism is so delicate and "sensitive," whatever that word means, that we cannot provide enough of a barrier against the harmful effects of the outside world.
Yes, I agree with this. It's the whole basis of the concept of the Highly Sensitive Person. I know I also take on the feelings of the people around me, including the refugees I work with. I used to have terrible problems with secondary trauma.
Exactly. I think that my other self-esteem and perception issues are just an additional, neurotic layer that stops me from listening to what my body has to say. And, like you, I find that making my world smaller (in terms of people) works better for me. I just had a discussion about this with my Iraqi client; she's very concerned that I am so closed off (she caught onto that very early on--my psuedo-relationships with people), and really frustrated that I won't give her my phone number or drop in to see her when I'm in her building (often). I drew a little box with by hands and explained that this is where I am comfortable, and I prefer to choose when I emerge, but almost nobody is allowed in past a certain layer of security. She said, archly, I was like Sadaam Hussein--he had a similar arrangement at his compound.
I used to be inherently social, but given the option now, I will spend a hell of a lot of time by myself. Yesterday when I worked from home, I was much calmer at the end of the day. It felt good, and yet I was highly productive. When my work hours changed a year and a half ago, the hardest thing for me was that I lost a big chunk of alone time. I used to get home at 3:30 and my husband didn't come home until 5:15. I needed--actually needed--that buffer time to have no human contact at all. I miss that a lot and I think it has had the effect of chipping away at my ability to maintain calm inside of myself. God, I'm so weird.
I think when it comes to making changes, I am just afraid of something...I can't really articulate it. I need to make some big decisions about how I work, the responsibilities I've taken on, and more. In spite of that, I don't want to think at all. I just want to stop feeling like I have cracked ribs and all of that.
My friend, again:
Maybe that's our illness - we are too aware of our world, our minds and our bodies. We analyze and over-analyze and our bodies take the brunt of it. "Enough" they say, "enough - you're stressing me out. How you are choosing to respond to your environment is killing me," our bodies and our minds say - we get sick.
I looked back on my journal from a couple of years ago. All I wanted and wrote about again and again was to be alone and to be left alone, and to stop talking. Unfortunately, my meds haven't cured the compulsive talking issue, but I am getting really good at not actually saying anything.
Sometimes I think I wear my nervous system on the outside.
Tuesday, April 8, 2008
Saturday, April 5, 2008
I am going home. I think my liver is going to explode. I am sure that my gall bladder is encouraging this in an attempt to free up some room for itself. My rib cage seems to have squeezed itself into an invisible corset and my entire torso is being crushed.
Maybe not. This is the next phase of shingles, part of the postherpetic neuralgia, which, in my case is causing referred pain. That means that the source of my pain and the place where the pain is ultimately felt are not the same. In this case, they are not even on the same side of the body. My affected nerves are in the back, but all of the pain has amalgamated in the front. I feel like I am dying, but Valtrex, Vicodin, Advil, and topical treatments have done their best to make sure I make it through this horror.
I can’t sit still and it must be annoying as hell for the people sitting close to me on the plane. There is no way to apologize, and how could I possibly explain what’s happening anyway?
I visited with my friend Laurel while I was in New York. She might be reading this, although I don’t share my blog information with people I actually know. Considering the clues I gave her about tracking things down in Blogger, Hansel and Gretel’s breadcrumbs would have worked like GPS had they contained similar directional insight.
It was good to see Laurel. I always enjoy watching her tell a story. She talks with her hands, but it's like ballet. She has the most delicate and graceful hands I've ever seen. Unlike me, she actually maintains relationships instead of decisively abandoning whatever no longer fits. As a result, I still get updates on college friends and sorority sisters who would otherwise be vague images in my memory’s crackling 8mm loop by now.
Laurel and her husband wrote a book and you should buy it. Sleuth around a bit in my profile and you’ll figure it out. I actually am not lying when I tell you I know interesting people.
Being in New York was like being blasted in the face by every major life decision I made between the ages of 18 and, well, now. I realized how different my life would have been had I stayed back East. I wondered what my career would have come to when my illness smacked me so hard I fell and never thought I would be able to get up again. I work in a fairly tolerant environment, and that is largely the reason I am still working today. I cannot say that the outcome of my brain explosion would have been so positive in other career circumstances.
All week, people asked me, “Do you miss it?” Miss what? The East Coast? The New York area? A job that paid well and demanded that I be a damned bright overachiever every single day? Do I miss the pace? It’s not a straightforward answer. While paying for a shirt in the NBC store, the cashier asked me if I like living out West. I thought for a second and said, “Well, when I’m there. But then I come here…” My voice trailed off and the young woman nodded and said she un-dah-stood what I was sayin’.
I had to think about this whole issue of my choices, career changing, and—always—Bipolar Disorder. I have a job that is comfortably dead-end in its direction. There is safety in this, just as there is safety in knowing that my particular position is so ungodly demanding that nobody else has any desire to try on my shoes, let alone maneuver to fill them.
That being said, I turned down a promotion recently. My boss was recently promoted. She is quick to tell people that she got to where she is because I mentored her and taught her everything she needed to know about professional competence and advancement. It’s a big, big jump and she was hesitant to take the job unless she knew she could hand off much of her current work to someone who not only wouldn’t fuck it up, but would nurture our mission with true love.
She said I was not only qualified, but the most obvious choice for many reasons. I told her I would think about it. When I eventually told her that I had decided against the promotion, she said, “You don’t have to tell me why, but I’d certainly like to know what you’re thinking.”
I told her it was strictly due to health reasons (ah, what a euphemism). She said, “But I thought this would give you more flexibility so you could adjust your time and workload if you needed to.”
But having that option was not my point. The point was to not get into that situation in the first place. I cannot risk the stress, I cannot risk the responsibility, and I cannot risk the pressure of knowing I have no room to Be Bipolar. What would I do? What if my medication stopped working—an inevitability for all people who take mood stabilizers. What would happen if I took a rapid slide into irrational, paranoid, hostile, weeping, fast-talking, sleep-deprived hypomanic rapid cycles and people were actually depending on me to steer our department through always-choppy waters? What would I do? How would I explain? How do you make people focus on the painfully stigmatized illness and not the behavior? You can’t. I can’t.
I like my job. I find value in the work. It is not glamorous. It is challenging every day, without exception. I do it well, even now after a major brain breakdown that almost killed me.
Everything takes me longer. Every frustration has to be tempered with compassion for myself and the reminder that I will never think as quickly, work as efficiently, or shrug things off at the end of the day the way I did prior to, say, 2001. The last two episodes of jarring BP cycling very likely caused permanent changes to the way neurotransmitter traffic flows through my brain, as well as to the processes inherent to the hippocampus and frontal lobe. This is not May as she once was, although she fakes it pretty damned well.
My trip gave me occasion to look at my life and my choices. It gave me the time to talk to myself about acceptance. I need to remember why I chose the way I did, and why my choices were right for me. I need to reassure myself that my responsibility is to live by thoughts rooted in self-awareness (even when I don’t like what I know to be true), and not by thoughts fueled by hubris.
Humility, not humiliation.
Growing up, I was the third child of four, all born one year apart. When we traveled by car, I always had to sit in the back seat, in the middle. My parents decided these things via a birth-order formula. My sister, the eldest, got to have a window. My brother, the next in line, got a window seat. My younger brother sat in the front with my parents. Done deal. I got the middle, where I was too short to see over the front seat and blocked from seeing out of either side window.
My sister would shove her hip as far to the center of the back seat as she could. This was an intentionally malicious behavior intended to rob me of as much back-seat real estate as possible—just for the hell of it. My older brother, wanting to gain favor with the power player sibling, would obstruct my view of the window. He knew it made me frustrated and claustrophobic, and therein lay the satisfaction.
I hated the long, long drives of family vacations.
When I decided to read books on those trips, my brother and sister would continually pass things back and forth to each other so they could put their arms and hands in front of my face as frequently as possible. My parents never intervened; they believed that I just needed to learn to either stick up for myself or to not give my siblings the satisfaction of seeing my rage.
My mother denies any of this ever happened.
Friday, April 4, 2008
I walked 21 blocks from my hotel to Walgreens today so I could get the rest of the Valtrex that my insurance wouldn't pay for on Sunday. Ha! They still won't pay for it, and I had to pay $93 for 12 pills. This seems wrong to me, very wrong.
I could have taken a cab, but I was so upset and brimming with tears when I left Walgreens, that I walked the 21 blocks back to my hotel. (I took the picture on the right with my cell phone while I was making my way back to the hotel.) OK, it was the short side of those blocks, but that's still a 20-minute+ walk, and I walk fast. This would be exactly the kind of thing I am not supposed to be doing. May is a stubborn, self-destructive idiot.
I want to go home.
Thursday, April 3, 2008
Things are a lot better today. I am amazed at how quickly feeling terribly sick makes my BP symptoms kick in. It's scary, really. The stress of illness throws my whole brain off balance. I had to be careful today not to babble on and on. At the same time, I had bouts of profound depression, and not because I saw a future of pain, but simply because I felt overwhelmed by the challenge of feeling so unwell. It's not that I don't have fight in me; it's just that there's not enough me in me to withstand a significant assault on my health. There's not enough self-monitoring and inner-scaffolding to keep me from falling down all around myself.
That being said, everyone who knows I'm sick commented on how wonderfully I'm doing and how they would never guess I'm as sick as I am. Unlike with BP, people have heard from reliable sources just how horrible shingles can be, so it's something they think is within their frame of reference. Trust me, unless you've had shingles, you do not have frame of reference anymore than you would if you were experiencing BP by reading about it in a book.
So, today I survived a few mini-bouts of paranoia, a little run of hypomania-fueled chatter, and some longer stretches of severe depression. At one point, my hotel room key deactivated, and for a minute, I was devastated, as if this were a monumental, personally-aimed tragedy. I took a deep breath and realized that it could have happened to anyone and probably does on a fairly regular basis. I was able to pull myself back to a rational state, and that is a personal success or sorts. Is this not the core of cognitive-behavioral therapy...to see that our thinking is running away from us and then knowing we have the power to pull ourselves back from distress?
Anyway, I stopped taking vicodin because it was just making me too sick. How do people get addicted to it? I'll never understand it because, frankly, narcotics do nothing for me. I just don't see the attraction. That's probably a good thing, given that researchers estimate that seventy percent of BP sufferers have an addiction comorbid with their principal illness. I am relieved to find myself in the minority section of that statistic.
Despite my troubles this week, I am reminded, just by being here, that I love the East Coast, I love New York, and I miss it. The West feels sleepy and bland in comparison. Maybe it's better that I don't live with the constant stimulation of this place anymore, but when I'm not here, it's just an abstract memory. Being here, right here, surrounds me with all of the reasons I wanted to stay in the first place and those reasons are vivid and tangible.
I am surrounded by my past, but it is my professional life that I feel most acutely at this moment. I am here in a professional capacity, only blocks away from the soul of my previous professional life. My work is mousy and unassuming, but it matters. Still, how does one keep that in mind when the flash and dazzle of previous days are in buildings just a couple of blocks away?
Am I rambling? Sorry.
I had an interesting experience today. I met up with a woman who works in refugee resettlement overseas. She works in a prominent position with an organization that is one step below the UN, but works in lockstep--as a partner agency--with them. I know her, but I only see her once a year. I asked her about a documentary that came out on PBS last spring, Rain in a Dry Land. The documentary is one of the most astounding works ever produced on the topic of refugee resettlement. I asked this woman if she had met the filmmaker, Anne Makepeace. She laughed and said, "May, I facilitated her visit--she was in the camp as my guest!"
It made me realize that I still know important people, except the important people I know now actually do something--something substantial.
I am nobody. I am somebody. I hope that no matter which way my brain scrambles on any given day, I will still be a contributor.
I want to be worthwhile.
Wednesday, April 2, 2008
This is not the best way for any trip to start, but when you have shingles, it's particularly unfortunate. I woke up this morning nauseated and sore, unable to move let alne get out of bed.
My colleage/roommate checked on me at noon to make sure I was OK. I wasn't, so she arranged for someone to bring me some food. A couple of other people checked on me troughout the day. I went out and got some soup late in the afternoon, and attended a plenary session at the conference. I had to leave before it was over because I was so dizzy, I started sliding out of the chair (I was only half in the chair to begin with since I couldn't put my back against anything hard).
I dashed back to my room and tried not to throw up.
Here I am, in the heart of The City, bound to my hotel room, sick and in pain. I hope to be healthier at some point before I go home...