Saturday, November 29, 2008
Wednesday, November 26, 2008
It is a long-standing tradition in my life to fall ill the week of Thanksgiving. In fact, of the four times I've had pneumonia, two were during the week of Thanksgiving. It seems to be hard-wired into my brain. I don't think about it; it just happens. And it sucks. And blows. And coughs.
My body produces mucous exceptionally well and with admirable efficiency. Throughout my life, solutions have appeared only to be taken away. Phenylpropanalomine (PPA) was an absolute lifesaver during some of my worst colds and bouts of bronchitis. Nothing else before or since worked as well. Unfortunately, this medication had an unexpected side effect. It was an excellent appetite suppressant. And here is where Americans slide into that murky swamp of no accountability. When the medication went over the counter, it wasn't long before people who refused to diet found out that the drug was quite helpful for those who wanted to lose weight effortlessly.
The thing is, though, that long-term, heavy use of PPA was already known to cause heart attacks and high blood pressure. It was clearly printed on the label. The medication was never meant to be a weight loss aid, it was never prescribed as such, and the manufacturers never mentioned it might be good for that. Unfotunately, the Dexatrim people sold it off-label anyway. People don't think real life applies to them. Chronic dieters developed serious health problems, not the least of which was heart failure. Rather than admit they were idiots to inappropriately ingest a powerful medication in high doses for years, they got together and did what Americans do: They filed personal injury lawsuits against the drug manufacturers citing reckless endangerment and "They should have told us not to do this."
In response to this, PPA was pulled from store shelves and completely taken off the market in 2000. I'll bet the lazy ass diet cheaters never got any thinner, but I started drowning in my own mucous every time I got a cold. And then, of course, I got pneumonia because there was no effective alternative to stop a run-of-the-mill head cold from turning into a major medical condition.
Sudafed never worked very well for me, but it was a serviceable, cheap substitute for PPA. At least, when I needed it, I could get oxygen into my body. Bonus for not dozing off while cooking or using power tools.
Of course, things became less convenient when the crystal meth addicts became drooling, face-picking, toothless shoplifters, clearing store shelves of huge quantities of Sudafed. turns out that the only other decongestant that ever worked is the key ingredient in meth. Can someone please stage a national intervention for these people? Sudafed wasn't eliminated from the American pharmacopoeia, but it started to feel somewhat unsavory when I had to start asking for it at the counter. Suddenly, stopping my runny nose took on the feel of buying a nickel bag.
All was better, if not great, for a few years. When it became evident that SSRI medications were not for me, my doctor prescribed an MAOI. The medication works great, although I do have to take a fairly large dose for the benefits to be apparent. Read the back of any cold medication and you'll see the warning: Do not take this medication if you are currently taking an MAOI.
I have a cold or something worse. I cannot take a decongestant. There are none left for me to take. I am now dependent on water to save me. I use a neti pot to flush out my sinuses. I drink hot tea. I have multiple vaporizers going at any time. I own five vaporizers and a humidifier. Is that excessive?
Let there be no doubt. Although some of those therapies are soothing, they don't do much to halt mucous production. I am congested. I am choking, and my eyes are watering.
I want to kick the collective asses of the lazy dieters and the hallucinating, thieving meth addicts every time I catch a cold. If only I could just wipe them down with a slimy, wet Kleenex.
Seems fair to me.
Sunday, November 23, 2008
My husband hates this. He hates it when I invite people to our house. He hates it that I have a lot of things in the house that are related to my job. He dislikes that I am required to work a fair amount of nights and weekends. He gets irritated that I often have to work on work at home. He does not answer the phone. He has no friends.
My husband said I am neglecting him and my home life. He said that my work is my life. I asked him this: "What do you want me to do? What do you want that is lacking? If I dropped it all tomorrow, got a clerical job with very structured hours, and had no obligations after 5:00 or on weekends, what would you see me doing here at home or with you that is not happening now? I don't have very many people in my life, at least, not on a personal level, but let's say I never invite another person over, I never take another phone call, and I am always 100% available to you, please tell me what you see me doing with that time here at home."
He had no answer. Eventually he said, "I just think you neglect us and you should pay as much attention to us as you do to your work and to the nonprofit." But still no mention of what "it" is I don't do that I should do.
My husband is very much like our border collie. He must have something to do almost every minute of his waking time. He is obsessed with home improvement. When I have down time and I am ready to be still and quiet, there is always a project going on in close proximity. I am frequently told we can't go here or there or do this activity or that one(Let's go away for the weekend. Let's visit so-and-so, Let's see a movie/exhibit/concert/whatever will get us out of the house...), I am shot down every time. "I have to finish the window. I want to paint the door. I'm going to fix the gate." Our house is not really a fixer. It's solid and in good condition. At this point, anything that needs to be done is strictly a choice or cosmetic. Why would I hang around for that?
I know there's a compromise in there, but I'll be damned if I know how to find it. I am not interested in doing home improvement work. I can no longer ride a bike, ski, rollerblade, hike, or even walk for exercise--not with my husband, anyway--he practically sprints. We don't go shopping since we have no money. It all belongs to the house. We watch TV together. I don't know what's left for us to do other than that. I guess I could hand him the tools or hold the light when he's improving the house. Yeah...because that's an outstanding use of my time.
He knew I was a workaholic when he met me. Why is it suddenly an issue?
Friday, November 21, 2008
She told me she was angry and sad and she couldn't understand how he could do that to his kids. Why didn't he reach out? Why didn't he try to get help? didn't he realize how angry and upset people would be?
I listened to her and calmly said, "Sonja, there was nothing anyone could have done. You don't know that he didn't reach out. And if he did, he didn't find what he needed among the people he knew."
Her eyes teared up and she said, "But his two little kids. What will their lives be like? What are they going to think knowing their father committed suicide?"
I chose my words carefully. "Sonja, Bill had arrived at the conclusion that his kids' lives would not be better by having him here. The truth is, he was in so much pain that not even his love for his children could make it bearable."
I thought, Why don't you understand that this isn't about making other people feel happy or comfortable? After all I've tried to teach you, why don't you accept this simple fact: People kill themselves because they want the pain to stop.
She tried one more "Why didn't he/how could he..." and I had a calm, measured response to that, too. She was getting angry. She should have known she chose the wrong person to have this conversation with if what she wanted was someone to validate her sense of guilt and helplessness regarding Bill's unwillingness to endure his situation. First, I don't have much tolerance for people who stigmatize death. I believe everyone would be just as sad had Bill died of a heart attack. A heart attack doesn't make people examine their own role in the relationship, though, and it is that reflection that is at the root of the discomfort Sonja is feeling.
Why didn't he reach out? When Bill started to unravel, Sonja distanced herself and told him to get help. He rebounded briefly, but after admitting that he wasn't doing as well as he appeared, Sonja distanced herself again. She talked about his demise and said he was messed up and pathetic. Several months ago, Bill left Sonja a voicemail saying he was selling everything and taking off--he had no idea where.
When she retrieved the message, she got angry and very agitated, saying, "Who does this? What is that supposed to mean? That's not fair. You can't just leave someone a message like that!" Not that she picked up the phone and tried to call him back to see if he was, in fact, reaching out. From my perspective, it seemed that Sonja had soundly rejected Bill's attempts at asking for help. How could she possibly feel any anger about his suicide?
She looked at me and said, "Look, it's just that, that someone I cared about* died and I feel sad and, and..."
I said, "Yes, I know you do. I'm sorry about that. I'm sorry you feel bad."
She left abruptly.
Later, I sent her this message:
I am sorry that you hurt right now. I do understand that you feel a loss in your world and that it’s sad and emotional. It must be hard to know that someone you cared about rejected everything and everyone in his world in one swift stroke.
Personally, I can’t say that another’s suicide is terrible or was a mistake. It doesn’t mean I don’t have feelings about it when it happens, although I am aware I may sound clinical and detached. It’s just that I cannot question and cannot judge the depths of someone else’s pain. As humans, we do not have the capacity for that kind of emotional insight. I do understand, though, how it feels to be judged, dismissed, and second-guessed—Trust me, having the people you know invalidate your reality only adds to an already excruciating discomfort. Perhaps this is among the reasons Bill didn’t go to the people who cared about him most—he knew there was no chance for objective assistance in his emotional state.
People in crisis know they can act on their desire to stop the unbearable emotional pain, but they also know it is dangerous to talk about it. It may be the only punishable “thought crime” in our society. Some of us know that it is too easy to be misunderstood by those who don’t grasp the complexity of the inner conversation that takes place while working toward a solution—whether that solution is life or death. It is very possible that the reason Bill didn’t reach out was that he didn’t want anyone else to judge him or to take away his right to control his own decisions, his own life. Ultimately, it was his decision and it was a decision that spoke clearly of his despair and inability to see any other way to stop his pain—he concluded that no one he knew had whatever it was he needed.
I know that what I am saying is of little or no comfort—I apologize for that. I am sorry you lost someone you cared about. Since I no longer possess a comforting demeanor anymore, let me at least offer some information.
May I suggest some very good reading? It was understanding that brought me some peace in my own troubled soul. These are not bereavement books; they are psycho-social analyses that all attempt to answer the question, “But why?” They do a good job of it, too.
Night Falls Fast
Kay Redfield Jamison
My preferred work on the subject.
I met Dr. Jamison a couple of years ago, I was grateful to have the opportunity to tell her that she was one of the three people responsible for keeping me alive. This book helped me understand that it was biology that had betrayed me so badly—not my character. Skip the part about Meriwether Lewis—it’s not that helpful.
The Suicidal Mind
November of the Soul: The Enigma of Suicide
George Howe Colt
Wednesday, November 12, 2008
No, I don't want to talk about it, I'm not being neurotic, and I'm not being critical. I'm just asking for sensitivity or a reasonable facsimile thereof if sensitivity is to be absent. Otherwise, my regular level of chronic sadness will only be compounded and I would rather know nothing than know something that makes me feel worse than I do on a typical day.
You've known me for nine years. I helped you start a career, find a husband, and attain citizenship. Because of this, you think you know me, you think you get it, but you don't. I know you, but the opposite has yet to materialize.
In the course of the past four years, I've tried to educate the people who know me about the difficulties I struggle with every day. And I do struggle along a daily path that is often grueling in its required effort, exhausting in its assault on my body, and, humiliating on many levels.
I really don't talk about much of anything of a personal nature anymore and I haven't for a long time. I try really hard not to, anyway, and that means that things have reached a point where there are some very huge gaps in what you (or anyone) knows about me, my health, and my prognosis. Only my doctor, my husband, and one friend have access to those facts. It is safer for me, safer for my future, but mostly safer in that it shields me from being talked about behind my back. There are a lot of details I must remember to keep to myself.
I never want my successes or failures to be blamed on my health, nor do I want to be held up as an example of what "people like me" are or do. I learned the hard way that as long as I just keep living up to expectations and others' perceptions, my life won't be up for scrutiny, speculation, or judgment. The only way to make sure I stay safe and under the radar is to shut up and keep up, at any cost. Any cost.
I doubt anyone has noticed just how deeply I've withdrawn, and that's actually a good thing--it means I am an outstanding actress and I am meeting everyone's needs and expectations, leaving no room for accusation or "See? I-told-you-so." If nobody is feeling disappointed by their interactions with me, then I am doing everything the way I need to in order to stay safe. Safe, safe, safe. I will be pleasant and friendly even to people I can't stand if it will keep...me...safe...from judgment.
It takes a lot of work to stay safe and out of the judgment zone. Every minute, every day, I am vigilant: Vigilant of my own behavior, vigilant of other's attitudes toward me, vigilant about listening to the words and attitudes of people around me, and vigilant about making note of what is said by those with whom I interact. People reveal a lot when they think it doesn't apply to the person with whom they are discussing a matter. What I see and hear is so abundant, I come home and write about it every night. It helps me see where there might be cracks in my own security walls.
Anyway, in all of that listening, I learn. I become aware. I take note and I see clearly what other people believe and think. Sometimes I wish they would be more careful, too, but we all wear our attitudes on the outside when we don't put enough effort into hiding them.
Here is an example. I am going to paraphrase a conversation, and I want you to think about how it sounds with a simple change in vocabulary that should alter nothing, yet, says everything that I, May Voirrey, need to know. Everything.
Sonja reaches over to the passenger seat and pats me on the knee. She says, "Don't take this the wrong way, but I think I see some symptoms of diabetes in Susan."
I reply, "Hmm. No, I don't see that at all. Although she does seem to have a lot of anxiety."
I think, "Well, yeah, I do have diabetes, but is she implying diabetes is something to be ashamed of? Should I worry that my medical condition is socially offensive, even to people who know me as more than just a pancreatic malfunction, a chemical blip??? Wow. Am I really something less because I have diabetes? It's not like there was anything on this planet I could have done to avoid having it. I guess I was absolutely right in thinking that people will say they've read the brochure and they understand, but in the end will talk about me behind my back if they find out I take insulin or that my illness affects how I feel from day to day. The world disappoints me yet again. Note to self: Never, ever mention the diabetes to anyone. You never know what attitudes people harbor, but my observations tell me that diabetes seems to carry a lot stigma, even among people who have the facts."
Do you know what my worst fear is in the whole world? My worst fear is that my husband will die. My second-worst fear is that my brain will stop responding to the many therapies it endures; therapies I endure so you and my husband (and only you two) do not reject me in my respective roles as employee and wife. Between you, you two determine whether or not I have something to anchor me. I endure physical and emotional discomfort you cannot imagine
not for my own wellness, but only so I can function in a way that is pleasing to my boss and my husband. But you probably knew that. I'm sure I said it before somewhere along the line.
Now I worry that my attempts at education haven't had any effect at all because it seems you look for evidence that "diabetes" is seeping through the tight seams I've stitched up so neatly around myself. Stop looking for what isn't there. Stop looking for it in other people. This particular illness presents so differently from patient to patient, it can be nearly impossible for a trained professional to recognize it as the same illness in two people who have it. You know that, right? No two cases are the same. Ever. When you imply that Susan has what I have, and that you know anything about how specifically the symptoms have to fit together to qualify as a diagnosis, you demean me with your belief that the illness is so ridiculously mundane that anyone can diagnose it. If only it were so simple. There is good reason it takes, on average, ten years of treatment before a correct diagnosis is made. It's not because patients don't seek help--it's because the helpers rarely get it right the first four times diagnosis is attempted. And those are M.D.s
One of the reasons I try not to talk about my cerebral anomaly is that (1.) nobody wants to know. Who gives a fuck, seriously, as long as I'm meeting my performance benchmarks in life? and, (2.) it doesn't change anything. Just know that if my brain ever betrays me again, I will not embarrass or disappoint you, my husband, or myself. I am a trooper and a hard worker and one who doesn't give up on things easily, but let there be no doubt: I will die before I will suffer again the way I did for four excruciating years. What I know that you do not know is how that time felt from my side of the fence. Had I known at the outset what was ahead of me, I never would have made that journey. Having made it, though, I remain obedient and compliant, doing everything that I have been instructed to do, never missing a step or stepping out of line. I am too afraid of the penalty.
I know that my illness is something that is likely to anger you, irritate you, disillusion you, and inconvenience you. I can't control how you react or what you believe, but your reaction did teach me the importance of not letting an illness be apparent if I need to be around you. You must always understand, though, that if my health seems compromised, it isn't from lack of vigilance and medical treatment on my part. I do what I can, nature does what it will. We fight about it every day.
This rambled a little bit, but there was a point. In the end, I'm left mulling something over, too. My illness is hard, but I don't see it as a source of personal embarrassment. When you said to me so condescendingly, "Don't take this the wrong way..." I realized that in that moment, I probably did understand you--and your perceptions--perfectly. What I heard is that you still perceive my illness as a personal shortcoming, and, it's offensive to say someone has it.
Monday, November 10, 2008
Think about the dream you had as a child. Do you remember? It was the dream where you were standing alone in a strange place with nobody familiar anyplace nearby. You were physically OK, but the fear and swelling panic in your chest were almost unbearable as you realized there was no familiar face to anchor you, no family member to accompany you as stumbled through the chaos.
Around the world, millions of refugees have lived this scenario as a frightening reality. Fleeing for their lives, they became separated from family, from their spouses, from their young children. They didn't know where to look for their loved ones, and there was no way to find out where to start. But they do look, and they start in some of the most dangerous places they have just fled.
This reality isn't characteristic of just one conflict; it is a running theme that has continued across continents and through centuries, snaking its way from family to family, war to war.
1995. Somalia. Sitey was awakened by the sound of gunfire outside. She lived in the same village her family had lived in for generations. They were pastoral farmers, poor, but self-sufficient. She gathered her infant son close to her chest and looked out the window. Somali soldiers were attacking her neighbors outside, and homes were succumbing to bright fires that snapped like angry, biting jaws. Sitey roused her other children and her husband, and all fled into the night.
When dawn came, Sitey was missing two children. She waited for as long as she could--long after her family and neighbors had run to safety. Her children were nowhere to be found. She started walking toward the Kenyan border, but when she caught up with relatives, she asked them to take her baby--she would not go on without looking for her kids.
Aliza is tall and dark-skinned, a Sudanese woman of Chiluk heritage. She stands tall and walks gracefully, and her beautiful smile is enhanced by her high, striking cheekbones. She is soft spoken. For the first time in the three years I've known her, Aliza spontaneously begins talking about her life in Sudan.
Shortly after her first wedding anniversary, her husband disappeared. He vanished without a trace. Aliza had an infant son and no money. She braved her first ride in a rickety rowboat as she set off to look for her husband in the last place he had been seen. All she could think about was that when her older brother was only ten years old, he was taken at gunpoint by soldiers. He was forced to serve, forced to fight. Neither Aliza nor any family member saw the boy again, although they searched frantically, asking strangers in nearby villages for any information about the child. He wasn't seen again until he was 26 years old and very, very far from home. By then, years of a brutally hard life--most of it spent firing a gun--had taken their toll. His family tried to scrape together the money to go to him, to bring him medicine, but time ran out. He died less than a year later of respiratory illness. Aliza said, "And he died alone, not even one person to be there with him. Nobody knew where was this boy. Nobody saw him. He was alone. He was my brother. I waited for him all those years, but I didn't see him."
Selver watched his home burn at the height of conflict in Kosovo. He gathered his kids and headed out of the village, nervously taking note of the bodies of his neighbors strewn along the side of the road. Villagers came on foot and on tractors--their cars had been confiscated by the Serbs. They family made their way out of town, only to be stopped by soldiers at a Serb checkpoint. The Serbs collected everyone's documents and identification, stripping the Kosovars of their proof--proof of everything they were or had been.
When Selver made his way to the Albanian border, it was raining. A makeshift refugee camp had started to emerge from the empty fields, and a growing number of plastic tarps stretched across the uncertainty. Selver kept his kids close. Several of his friends were missing, and he knew that once a person strayed from sight here, it was possible they would vanish with the morning fog. Selver knew that no matter what else he and his family did, they must stay together. He told me once that so many people from his village disappeared, he couldn't name all of them anymore.
To be a refugee means many things. It means starting over with the never-completely-lost hope of going back to what ended. It means having nothing but your life. It means knowing how strong you are and how resourceful you can be and that's how you survived. It also means facing loss. Loss of home, loss of the familiar, loss of the past and perhaps of the future only dreamed of. For many, it also means the loss of loved ones.
Liberata lost her children on a dark night in eastern Congo. When they fled, they ran to the forest. In that night of chaos, Liberata had to keep going, hoping against hope that her kids were doing the same thing somewhere close by. Liberata walked through the jungle for months. She made it all the way to the Congo River and headed north, walking, walking, until she crossed the border into the Central African Republic where she officially became a refugee. She has no idea where her family members are. None. She is here with a daughter and a nephew. She is down one husband and four children.
For anyone who has never experienced war, there is no way to comprehend all of the levels of loss. Losing everything has no real meaning until a survivor realizes there is no family, there are no friends. They might be alive, they might have perished. Are they looking for me? does someone know where they are? It is the not knowing that ignites both hope and gut-clenching anxiety. To lose something precious is painful; to lose something and not know if it is really lost or just waiting to be found is maddening.
Aliza was eventually reunited with her husband, but friends who were secretly jailed never came home. Sitey located her two children in the orphanage at the Kakuma Refugee Camp in Kenya. Unfortunately, it was a brief moment of reunion--Sitey's immigration documents were ready, and her departure to the U.S. was imminent. She hasn't seen her kids in five years, and they are not eligible to come to the United States. Sitey grieves deeply about this, but she is comforted by at last knowing where her children are in the world.
After World War II, the Red Cross spent a great deal of effort trying to reunite Europe's war refugees. It was a tedious and difficult task since so many people had perished or moved on. The Red Cross continues this work in post-war settings today.
There is another group, though, that is using the power of the Internet to help refugees worldwide connect with their lost loved ones. Refugees United is a very small nongovernmental organization providing a secure and widely accessible portal service for separated refugees. Check out their Website, read about what they do, and spread the word. Silence is the enemy of the lost.
Saturday, November 8, 2008
Monday, November 3, 2008
The last few years of my life have had far more bad days than good ones. I take bad days for granted. I feel bad, or I gain weight, or I'm sick or I get hit with an unexpected medical bill, or I lose something I desperately need.
Today was not that day. Although my weekend was rife with disappointment and resentment, I'm taking a moment to appreciate the following grace notes from today:
- My 5-year car loan was finally paid off this morning.
- I got a present in the mail. It's something I need for the startup nonprofit. It's small but really helpful and it was unexpected.
- I was able to book an appointment with a private hairstylist. She's not in a salon--she has a private studio and an outstanding reputation. I'll spend the $70 if it's the right haircut. Oh, and I got an appointment within a week of asking for one--unheard of.
- When I got home from work today, there was a rebate check in the mail from 1-800-Contacts. I had forgotten all about it, especially since it really does take eight weeks.
- There was a box sitting on the kitchen counter with an Indiana return address. I don't know anyone there, so I was puzzled. I opened the box and inside there was a brand new Flip video camera. Ah, yes! I got this as a reward for submitting 17 reports to Angie's List in October. Sweet! It would have been reward enough that my household is going to be the subject of a future article in the Angie's List magazine. Fame but absolutely no fortune.
I celebrated all of this by spending an hour alone in the bedroom where I immersed myself in voting. The mail-in ballot in my state was huge. Two long cards, double-sided. It was exhausting, but my civic duty is done. Almost. My ballot still has to be hand-delivered to the drop-off site tomorrow.
Now, it's fingers crossed that my car doesn't blow up or get demolished. I cannot afford to go through this process again (Experience death of car. Buy new car. Pay off car. Experience death of car via crash with errant blue Volvo. Buy a new car. Pay off car.) That car crash was the sart of my great unraveling, and I really, really can't afford to go through that again.