We humans are an interesting lot. We form opinions about things, and even if we think we don't express our beliefs, they come through when we're not paying attention. It happens to everybody.
This afternoon I had a one-on-one meeting with a colleague. We got into a discussion about adults with learning disabilities and special needs. I mentioned a student who had endured gran mal seizures as a child and teen and had incurred brain damage as a result. She has made remarkable progress at school, and although she was almost unresponsive to us a year ago, she's perfroming better than the other students in her class now.
My colleague mentioned that her class tutor has Asperger's Syndrome, a form of autism. She said he's learning a new job at the supermarket where he works and as long he stays on his medication (for what, I don't know) and lives with a lot of structure, he's "highly functional."
She went to say, "Treatment and therapy can really do wonders. My sister-in-law is bipolar and she's working as a cashier now. She started as a grocery bagger, but she's been able to handle the new job very well."
I kept my mouth shut, but I thought, "A cashier? Is this all that people with bipolar disorder are believed to be capable of? Cashiering as an accomplishment?"
I was tempted to blurt out that I had bipolar disorder and I had left cashiering for even harder things more than 25 years ago. It's really amazing what we bipolars are capable of. Must be the drugs.
Thursday, August 30, 2007
Thursday, August 23, 2007
Revelations
Things you might not know about me:
Monday, August 20, 2007
Journey to the Center of the Earth
There's a reason why airfare to Phoenix is so very inexpensive in August. It's called heat. Never have I felt such seriously brutal heat.
Whose brilliant idea was it to establish a major city in the middle of the desert?
Actually, I had a wonderful and lovely time in Arizona, but that had nothing to do with the weather and everything to do with the reason I was there. I was there to visit a friend, a friend I barely knew according to conventional measures, yet chronology and geography aside, I realize I've known her on the soul level for quite some time.
I met my friend on the Internet. The amazing thing about the Internet is that it continues to make the world more accessible. My friend and I met on a forum where we were discussing the nature of hope and the concept of trying. We took up writing long, soul-searching email messages wherein we discovered that we had laid the foundation of a spectacular friendship.
When it came time for me take a vacation, there was really no decision to make about where I would go. It wouldn't have mattered had my friend lived in Maine, Alaska, or Arizona. With the possible exception of Alabama or Mississippi (humidity), I was going to go wherever she was.
After a week in Arizona, I realized that spending time with the right people is what's most restorative about vacation. The location is almost irrelevant when you're in good company.
My vacation was fabulous.
Whose brilliant idea was it to establish a major city in the middle of the desert?
Actually, I had a wonderful and lovely time in Arizona, but that had nothing to do with the weather and everything to do with the reason I was there. I was there to visit a friend, a friend I barely knew according to conventional measures, yet chronology and geography aside, I realize I've known her on the soul level for quite some time.
I met my friend on the Internet. The amazing thing about the Internet is that it continues to make the world more accessible. My friend and I met on a forum where we were discussing the nature of hope and the concept of trying. We took up writing long, soul-searching email messages wherein we discovered that we had laid the foundation of a spectacular friendship.
When it came time for me take a vacation, there was really no decision to make about where I would go. It wouldn't have mattered had my friend lived in Maine, Alaska, or Arizona. With the possible exception of Alabama or Mississippi (humidity), I was going to go wherever she was.
After a week in Arizona, I realized that spending time with the right people is what's most restorative about vacation. The location is almost irrelevant when you're in good company.
My vacation was fabulous.
Sunday, August 5, 2007
Vicarious hair and other parental nonsense
When I was a little girl, my neighborhood nickname was "Mag the Hag." I earned this nickname in part because I had long, white blond hair that was usually a tornado-like mess. My mother had always dreamed of having long, flowing blond hair herself, but since nature had given her thin, fragile, black hair, her next best hope was my hair.
It's tough to have long hair when you're a little kid. Stuff gets tangled in it, it's a lot to manage, and in the days before instant conditioner or even a decent creme rinse, the after-shampooing comb-out was nothing short of child abuse.
My mom was beleaguered by the household duties of a 1960s housewife, which included raising the four kids she had borne in a span of only five years. Having a daughter with high maintenance hair was not a very practical choice, but my mother's desperation for good hair was bound to be vicariously experienced through me. Except...we had very different ideas about what makes hair beautiful.
My mom had enough to do during the ins and outs of a normal day without having to put too much effort into fixing my hair. This meant that ninety percent of the time, she pulled my hair back into a high ponytail and sent me on my way. On a special day, I might get braids (which she could never get quite right, as a boy who sat behind me in second grade pointed out repeatedly), and for holidays, there was the exotic and highly anticipated bun. With hairspray.
I hated ponytails. I thought they were uninspired and an insult to my inner princess. I dreamed of long, flowing hair that rippled in the wind. To help myself achieve this vision of hair beauty, I almost always tried to pull out the ponytail immediately upon stepping into the backyard. There were two problems with this, yet they never dampened my Rapunzel-like aspirations. The first problem was that my mother put my hair up using regular rubber bands. They were a bitch to get out unless you could see what you were doing, which I could not. After making a snarled mess of my hair with the stubbornly stuck rubber band, I would usually abandon my attempt and go about my day, unconcerned about the cotton-candy shaped blob of hair on the back of my head, complete with twisted-up rubber band dangling in the knot, too embedded to fall out. I opted to ignore that which I could not see in favor of enjoying the long strands grazing my cheeks in full cooperation with my dream of seraphim's locks. From an outsider's perspective, I can see where Mag the Hag may have seemed appropriate at the time.
My mother was exasperated by my stubborn insistence on trying to get my hair out of the ponytail, and around the start of fifth grade, I was allowed to get my first salon haircut. I had the majority of my hair cut off into what was then known as a pixie (let's hear it for Mary Martin, liberator of all little girls being forced by their mothers to have long hair).
My mother didn't totally throw in the towel for a few more years, as she started bleaching my now-changing hair color back to blond starting when I was about 12. Highlights were still a relatively unknown technique in the hair world, so Mom, Nice 'N' Easy and I had a standing appointment in the bathroom every eight weeks or so. My mother was willing to give up on the length of my hair, but when it came to the hormone-induced end to having a blond-haired daughter, Mom wasn't going down without a fight.
I always felt that my hair was mine and nobody else's, although Mom disagreed. My mother wrung her hands in anguish as I eventually eschewed blond hair, and then proceeded to change my hair to every color that L'Oreal makes--and a few they don't. My hair has been very long, layered, straight, permed, short, extremely short, avant-garde, mainstream, and just about anything else you can think of. Except pink. I never had pink hair. Not on purpose.
I am in my 40s now, and my mother still gives me grief about my hair. She had to concede that I wasn't going to wear makeup, not even "just a little lipstick before going out." Maybe she decided to pick her battles, and as her own hair hasn't aged well (not that it has ever, in 72 years, had the chance to be gray), she's still holding out hope that I can get away with long, blond tresses. Moms. They always have so much hope for their children.
My mom didn't leave her vicarious aspirations at the end of a hairbrush. Oh, no. My mother always wanted to be a dancer, so I took tap and ballet lessons for five long, painful years where I succeeded only in demonstrating my unconquerable lack of coordination. On my sister's 12th birthday, a piano showed up in the house in the middle of the party. I asked my mom, "My sister going to take piano lessons? I thought she wanted to learn the flute." My mother gave me that patient, condescending look that only mothers can give and said, "Well, you're both going to take lessons."
I was confused. I looked my mother in the eye and said, "But I don't want to learn how to play the piano. That's boring." My mom, for whatever reason, wouldn't take lessons herself, and so I was forced, for seven long, long years to sit at the piano every day wondering how this practice time was fulfilling my mother's dream of playing the piano. I think my parents had envisioned evenings of the family gathered around the piano with me taking requests and providing live entertainment. They hadn't factored in my complete and total lack of interest in playing this instrument, let alone the absolute absence of talent or natural ability on my part.
What a disappointment I must be to the Gods of Vicarious Fulfillment. I was a totally withdrawn dork in high school, firmly distanced from activities and the popularity that comes with them. I didn't become a dancer or theater star, I failed at all athletic pursuits I was forced to endure, I continue to refuse to bleach my hair, I haven't touched a piano in almost 30 years (nor do I want to), I'm seriously fat, I didn't marry JP but when I did marry, I eloped(!); I refused to have children, and I gave up a lucrative and trendy career to work with disadvantaged immigrants.
Sorry, mom. You tried, you really did, but unfortunately for you, I did succeed in one thing you wanted: I learned to think for myself and stick to my guns.
It's tough to have long hair when you're a little kid. Stuff gets tangled in it, it's a lot to manage, and in the days before instant conditioner or even a decent creme rinse, the after-shampooing comb-out was nothing short of child abuse.
My mom was beleaguered by the household duties of a 1960s housewife, which included raising the four kids she had borne in a span of only five years. Having a daughter with high maintenance hair was not a very practical choice, but my mother's desperation for good hair was bound to be vicariously experienced through me. Except...we had very different ideas about what makes hair beautiful.
My mom had enough to do during the ins and outs of a normal day without having to put too much effort into fixing my hair. This meant that ninety percent of the time, she pulled my hair back into a high ponytail and sent me on my way. On a special day, I might get braids (which she could never get quite right, as a boy who sat behind me in second grade pointed out repeatedly), and for holidays, there was the exotic and highly anticipated bun. With hairspray.
I hated ponytails. I thought they were uninspired and an insult to my inner princess. I dreamed of long, flowing hair that rippled in the wind. To help myself achieve this vision of hair beauty, I almost always tried to pull out the ponytail immediately upon stepping into the backyard. There were two problems with this, yet they never dampened my Rapunzel-like aspirations. The first problem was that my mother put my hair up using regular rubber bands. They were a bitch to get out unless you could see what you were doing, which I could not. After making a snarled mess of my hair with the stubbornly stuck rubber band, I would usually abandon my attempt and go about my day, unconcerned about the cotton-candy shaped blob of hair on the back of my head, complete with twisted-up rubber band dangling in the knot, too embedded to fall out. I opted to ignore that which I could not see in favor of enjoying the long strands grazing my cheeks in full cooperation with my dream of seraphim's locks. From an outsider's perspective, I can see where Mag the Hag may have seemed appropriate at the time.
My mother was exasperated by my stubborn insistence on trying to get my hair out of the ponytail, and around the start of fifth grade, I was allowed to get my first salon haircut. I had the majority of my hair cut off into what was then known as a pixie (let's hear it for Mary Martin, liberator of all little girls being forced by their mothers to have long hair).
My mother didn't totally throw in the towel for a few more years, as she started bleaching my now-changing hair color back to blond starting when I was about 12. Highlights were still a relatively unknown technique in the hair world, so Mom, Nice 'N' Easy and I had a standing appointment in the bathroom every eight weeks or so. My mother was willing to give up on the length of my hair, but when it came to the hormone-induced end to having a blond-haired daughter, Mom wasn't going down without a fight.
I always felt that my hair was mine and nobody else's, although Mom disagreed. My mother wrung her hands in anguish as I eventually eschewed blond hair, and then proceeded to change my hair to every color that L'Oreal makes--and a few they don't. My hair has been very long, layered, straight, permed, short, extremely short, avant-garde, mainstream, and just about anything else you can think of. Except pink. I never had pink hair. Not on purpose.
I am in my 40s now, and my mother still gives me grief about my hair. She had to concede that I wasn't going to wear makeup, not even "just a little lipstick before going out." Maybe she decided to pick her battles, and as her own hair hasn't aged well (not that it has ever, in 72 years, had the chance to be gray), she's still holding out hope that I can get away with long, blond tresses. Moms. They always have so much hope for their children.
My mom didn't leave her vicarious aspirations at the end of a hairbrush. Oh, no. My mother always wanted to be a dancer, so I took tap and ballet lessons for five long, painful years where I succeeded only in demonstrating my unconquerable lack of coordination. On my sister's 12th birthday, a piano showed up in the house in the middle of the party. I asked my mom, "My sister going to take piano lessons? I thought she wanted to learn the flute." My mother gave me that patient, condescending look that only mothers can give and said, "Well, you're both going to take lessons."
I was confused. I looked my mother in the eye and said, "But I don't want to learn how to play the piano. That's boring." My mom, for whatever reason, wouldn't take lessons herself, and so I was forced, for seven long, long years to sit at the piano every day wondering how this practice time was fulfilling my mother's dream of playing the piano. I think my parents had envisioned evenings of the family gathered around the piano with me taking requests and providing live entertainment. They hadn't factored in my complete and total lack of interest in playing this instrument, let alone the absolute absence of talent or natural ability on my part.
What a disappointment I must be to the Gods of Vicarious Fulfillment. I was a totally withdrawn dork in high school, firmly distanced from activities and the popularity that comes with them. I didn't become a dancer or theater star, I failed at all athletic pursuits I was forced to endure, I continue to refuse to bleach my hair, I haven't touched a piano in almost 30 years (nor do I want to), I'm seriously fat, I didn't marry JP but when I did marry, I eloped(!); I refused to have children, and I gave up a lucrative and trendy career to work with disadvantaged immigrants.
Sorry, mom. You tried, you really did, but unfortunately for you, I did succeed in one thing you wanted: I learned to think for myself and stick to my guns.
Saturday, August 4, 2007
Irony
In case you missed it before, let me recap my feelings about suicide. Suicide is a fundamental right of being human and it's a personal choice. Just as some people choose to live, others find that their most appropriate option in life is to leave it behind. Unless you've been there, it's easy to underestimate exactly how much pain has to be accumulated in a person's life to make leaving more appealing than staying.
There are many, many people who believe it is their duty to do anything--anything--to stop another person from committing suicide. I say, why is it anyone's business? Do a Web search on "suicide prevention" or "suicide support" and you'll see what I mean. Where does this attitude come from that deems it appropriate to "save" someone from suicide? Why is there an arrogant assumption that only people who are unfit to think for themselves would consider suicide? They say things like, Life is a gift not to be wasted. Life is not a gift; it is biological happenstance and we do what we can for as long as we can once we get here. Still the words keep coming: Hang on, there's hope, you just need to see another day, things will look better when you're not so emotional, you just need to talk about it, blah, blah, blah. Talk about it? In this country, you'll actually get hauled away by the police if you so much as discuss the possibility of ending your own life (trust me on this).
People who feel adamant about interrupting the life/death path of another person are asking the wrong questions. and pursuing the wrong answer. The issue isn't about what you're doing to stop someone from committing suicide; the issue is this: What are you doing to help eliminate the intolerable pain and suffering from the life of the person who is contemplating suicide? Suicide isn't about death nearly as much as it is about pain and stopping pain.
It is cruel to stop someone from committing suicide when in the end that action will only serve to make you feel better but without easing the horrible burden of suffering of the person who wishes to die. Why don't people get this? Why does anyone feel they have the right to stop a suicide when they haven't done much, if anything at all, to alleviate the pain that brought on the desire to die?
I truly, passionately believe that if you can't help me slog through Hell, then you haven't paid the price of admission to discuss my final options. Screw you if you think you do. I know what it's like to feel abandonment. I know what it's like to realize that at the most painful, godawful time in your life, you are going down that path alone...very alone (see link). Don't act like you've been with me all along when you really just jumped out of the bushes at the last turn.
So, here's the irony. I've started to receive newsletters via email from a suicide prevention and support organization. Now, I spend a fair amount of time on the Internet and I certainly have visited my share of message boards and made extensive Google searches on topics of a personal nature. Never, ever have I compromised my privacy by doing anything under my real name. Never. Imagine my surprise, then, to find these e-newsletters coming to my work email address.
I am not a detective, but I can connect very obvious dots. In this case, I think it's safe to conclude that someone else signed me up for this "help." Un-fucking-believable. My immediate reaction is to be profoundly offended and outraged by the presumptuous, arrogant attitude of the person who, having taken stock of my deficits, thought they should "suggest" I need help. If I knew who this person was, I would say, "Where were you a year ago when I was seriously grasping for a lifeline? Where were you 18 months ago when I was actively planning my own death? Why do you think it's OK to imply I need help, yet you are such a coward, rather than just ask if I'm OK, you sign me up for something behind my back? Why can't you sit down, present your suggestion, and discuss it with me? Why do you think it's OK to comment on my life via anonymous suggestions? What's coming to my inbox next, Weight Watcher's coupons?"
After my initial outrage, I realized that irony snakes throughout this situation. Sending this newsletter to me is like buying a rosary for a monkey. It's poorly thought out and ultimately, a wasted effort. I'd have to say that I'm the last person who is open to the concept of "suicide aversion." No, no, no. I'm the woman who believes you get to choose how you die, just as you get to make all of the other big decisions that come with being human.
Both my husband and my therapist asked me if I really mean it that I wouldn't stop another person from committing suicide. My husband took it a little further and said, "What if it was someone you loved?" Well, if it were someone I loved, I would talk it over with them to make sure they understood the implications of the decision. If that person was really adamant about suicide and there was no way for me to provide comfort, then yes, I would respect his or her decision and step away. I would not, however, send anonymous email suggesting that the person needs an intervention.
I cannot respect the suggestions of a person who not only doesn't respect my right to choose, but who also can't look me in the eye or tell me to my face that they think my emotional health is somehow theirs to comment upon. This is not a case of someone showing concern or trying to be a friend. It's a case of someone blatantly passing judgment on me in a complex situation they are not equipped to understand.
Screw that.
There are many, many people who believe it is their duty to do anything--anything--to stop another person from committing suicide. I say, why is it anyone's business? Do a Web search on "suicide prevention" or "suicide support" and you'll see what I mean. Where does this attitude come from that deems it appropriate to "save" someone from suicide? Why is there an arrogant assumption that only people who are unfit to think for themselves would consider suicide? They say things like, Life is a gift not to be wasted. Life is not a gift; it is biological happenstance and we do what we can for as long as we can once we get here. Still the words keep coming: Hang on, there's hope, you just need to see another day, things will look better when you're not so emotional, you just need to talk about it, blah, blah, blah. Talk about it? In this country, you'll actually get hauled away by the police if you so much as discuss the possibility of ending your own life (trust me on this).
People who feel adamant about interrupting the life/death path of another person are asking the wrong questions. and pursuing the wrong answer. The issue isn't about what you're doing to stop someone from committing suicide; the issue is this: What are you doing to help eliminate the intolerable pain and suffering from the life of the person who is contemplating suicide? Suicide isn't about death nearly as much as it is about pain and stopping pain.
It is cruel to stop someone from committing suicide when in the end that action will only serve to make you feel better but without easing the horrible burden of suffering of the person who wishes to die. Why don't people get this? Why does anyone feel they have the right to stop a suicide when they haven't done much, if anything at all, to alleviate the pain that brought on the desire to die?
I truly, passionately believe that if you can't help me slog through Hell, then you haven't paid the price of admission to discuss my final options. Screw you if you think you do. I know what it's like to feel abandonment. I know what it's like to realize that at the most painful, godawful time in your life, you are going down that path alone...very alone (see link). Don't act like you've been with me all along when you really just jumped out of the bushes at the last turn.
So, here's the irony. I've started to receive newsletters via email from a suicide prevention and support organization. Now, I spend a fair amount of time on the Internet and I certainly have visited my share of message boards and made extensive Google searches on topics of a personal nature. Never, ever have I compromised my privacy by doing anything under my real name. Never. Imagine my surprise, then, to find these e-newsletters coming to my work email address.
I am not a detective, but I can connect very obvious dots. In this case, I think it's safe to conclude that someone else signed me up for this "help." Un-fucking-believable. My immediate reaction is to be profoundly offended and outraged by the presumptuous, arrogant attitude of the person who, having taken stock of my deficits, thought they should "suggest" I need help. If I knew who this person was, I would say, "Where were you a year ago when I was seriously grasping for a lifeline? Where were you 18 months ago when I was actively planning my own death? Why do you think it's OK to imply I need help, yet you are such a coward, rather than just ask if I'm OK, you sign me up for something behind my back? Why can't you sit down, present your suggestion, and discuss it with me? Why do you think it's OK to comment on my life via anonymous suggestions? What's coming to my inbox next, Weight Watcher's coupons?"
After my initial outrage, I realized that irony snakes throughout this situation. Sending this newsletter to me is like buying a rosary for a monkey. It's poorly thought out and ultimately, a wasted effort. I'd have to say that I'm the last person who is open to the concept of "suicide aversion." No, no, no. I'm the woman who believes you get to choose how you die, just as you get to make all of the other big decisions that come with being human.
Both my husband and my therapist asked me if I really mean it that I wouldn't stop another person from committing suicide. My husband took it a little further and said, "What if it was someone you loved?" Well, if it were someone I loved, I would talk it over with them to make sure they understood the implications of the decision. If that person was really adamant about suicide and there was no way for me to provide comfort, then yes, I would respect his or her decision and step away. I would not, however, send anonymous email suggesting that the person needs an intervention.
I cannot respect the suggestions of a person who not only doesn't respect my right to choose, but who also can't look me in the eye or tell me to my face that they think my emotional health is somehow theirs to comment upon. This is not a case of someone showing concern or trying to be a friend. It's a case of someone blatantly passing judgment on me in a complex situation they are not equipped to understand.
Screw that.
Monday, July 23, 2007
Failure to thrive
I suppose it was inevitable. Sharifo’s baby died, after a year of barely staying alive. The baby underwent three surgeries for a congenital heart defect, and then spent most of his life in the neonatal critical care unit at Children’s Hospital. In the first ten months of his life, the baby had the best medical care available, yet failed to thrive.
When I first met Sharifo a few weeks ago, she told me about her "American baby," the son who had been born in the United States. I commented that she knew a lot of English for someone who hadn't taken classes, and she let me know that she had learned much of her English in the hospital. How foreign that hospital must have seemed to her with its bright lights, incubators, machines and alarms. Sharifo herself is Somali Bantu , a group that had little exposure or access to technology before relocating to the United States.
On that late afternoon, sitting in Sharifo’s cluttered living room a few weeks ago, I noticed an African straw mat placed under the circa 1975 coffee table, the torn window screen, sheets covering the windows and sofas, and a small hospital crib in the corner. Next to the crib there was an IV stand with digital controls; two green oxygen canisters had been haphazardly shoved under a chair. Sharifo knew how to change the IV, how to change the dressings on her son’s surgical incisions, and how to swap out the oxygen bottles. She was a long, long way from a mud hut in an impossibly dusty refugee camp in Kenya.
Sharifo told me that her son often needed to be rushed to the hospital when his condition became unstable. Despite the fact that she has three other children, Sharifo spent night after night at her son’s side. She had hope. The very nature of the hospital, the technology, and the doctors and nurses who doggedly worked to keep the baby alive all gave Sharifo the impression that her son would undoubtedly survive and live to be a healthy child.
The reality is that had Sharifo’s son been born in either the Dadaab or Kakuma refugee camps—Sharifo’s home prior to living in the States—the baby would have died within days of being born. Sharifo knew that, and while seeing the centuries of difference in the kind of care available, she had no reason to believe that this baby, the one born in the US, would not respond to the doctors, the technology, and the vast sums of money being focused on her son.
What must it be like to believe you are functioning within a world of hope and possibility, to think that you have no reason to doubt these educated people and their technology, only to find out that the outcome, although protracted, is no different than it would have been on a dusty plain in Kenya? I cannot fathom the depth of Sharifo’s sense of loss, her grief, and her profound disappointment in a situation that showed such promise.
Sharifo is not alone. The Bantu community has rallied around her, filling her house with love, support, and comfort. In Bantu culture, there are no visiting hours; community members come and they stay in the house for days, physically filling the space so the grief can be absorbed among many, and not allowed to grow to fill the empty places of a quiet house.
Sharifo and her family have no money. Sharifo was never able to work because she had small children and then the son who was so sick. Her husband works, but doesn’t really make enough to support the family. They live in public housing and make the most of what little public assistance they receive. Who will pay for the funeral? Where will the baby be buried? Do Sharifo and her husband understand the death practices that are the cultural norm in this country?
It breaks my heart to know that Sharifo—so focused, so tired, and so hopeful about her son—has suffered this loss. I know that the other Bantu families will do what they can to soothe her grief. Still, how do you move on after you’ve lost your home, your homeland, a big piece of your culture, and then the most precious thing of all, the child who you had hoped would be the start of your family’s second generation—a new life within your new life?
I cannot imagine.
When I first met Sharifo a few weeks ago, she told me about her "American baby," the son who had been born in the United States. I commented that she knew a lot of English for someone who hadn't taken classes, and she let me know that she had learned much of her English in the hospital. How foreign that hospital must have seemed to her with its bright lights, incubators, machines and alarms. Sharifo herself is Somali Bantu , a group that had little exposure or access to technology before relocating to the United States.
On that late afternoon, sitting in Sharifo’s cluttered living room a few weeks ago, I noticed an African straw mat placed under the circa 1975 coffee table, the torn window screen, sheets covering the windows and sofas, and a small hospital crib in the corner. Next to the crib there was an IV stand with digital controls; two green oxygen canisters had been haphazardly shoved under a chair. Sharifo knew how to change the IV, how to change the dressings on her son’s surgical incisions, and how to swap out the oxygen bottles. She was a long, long way from a mud hut in an impossibly dusty refugee camp in Kenya.
Sharifo told me that her son often needed to be rushed to the hospital when his condition became unstable. Despite the fact that she has three other children, Sharifo spent night after night at her son’s side. She had hope. The very nature of the hospital, the technology, and the doctors and nurses who doggedly worked to keep the baby alive all gave Sharifo the impression that her son would undoubtedly survive and live to be a healthy child.
The reality is that had Sharifo’s son been born in either the Dadaab or Kakuma refugee camps—Sharifo’s home prior to living in the States—the baby would have died within days of being born. Sharifo knew that, and while seeing the centuries of difference in the kind of care available, she had no reason to believe that this baby, the one born in the US, would not respond to the doctors, the technology, and the vast sums of money being focused on her son.
What must it be like to believe you are functioning within a world of hope and possibility, to think that you have no reason to doubt these educated people and their technology, only to find out that the outcome, although protracted, is no different than it would have been on a dusty plain in Kenya? I cannot fathom the depth of Sharifo’s sense of loss, her grief, and her profound disappointment in a situation that showed such promise.
Sharifo is not alone. The Bantu community has rallied around her, filling her house with love, support, and comfort. In Bantu culture, there are no visiting hours; community members come and they stay in the house for days, physically filling the space so the grief can be absorbed among many, and not allowed to grow to fill the empty places of a quiet house.
Sharifo and her family have no money. Sharifo was never able to work because she had small children and then the son who was so sick. Her husband works, but doesn’t really make enough to support the family. They live in public housing and make the most of what little public assistance they receive. Who will pay for the funeral? Where will the baby be buried? Do Sharifo and her husband understand the death practices that are the cultural norm in this country?
It breaks my heart to know that Sharifo—so focused, so tired, and so hopeful about her son—has suffered this loss. I know that the other Bantu families will do what they can to soothe her grief. Still, how do you move on after you’ve lost your home, your homeland, a big piece of your culture, and then the most precious thing of all, the child who you had hoped would be the start of your family’s second generation—a new life within your new life?
I cannot imagine.
Monday, July 16, 2007
The conundrum of emotional independence
In the course of managing my illness, I had to make some difficult choices about restructuring the relationships in my life. Some relationships I kept because they were fulfilling and enriching; others had become if not stale, then definitely more of a habit than an actual friendship. When you have a limited amount of energy and focus available to you, you need to cull from your life the things that no longer enhance that energy.
I do not regret my decision to trim down the number of people in my life. It was a healthy and necessary decision. In addition, I’ve also found it necessary to dramatically cut back on how much interaction I have with coworkers and other peripheral people in my life. I can’t pretend that these are true friendships anymore. My doctor once told me that friends are friends and coworkers are coworkers, and it would benefit me to not confuse the two. In other words, the friendships you have at work are actually nothing more than surface relationships, and to go further, you run a hazardous risk of exposing your most personal secrets in a much more public arena.
Again, it’s OK. I am comfortable enough with myself that I don’t need to validate my worth by way of the number of people who are close to me or vice versa. Here’s the thing, though. When you partition off the different parts of your life with such severity, it becomes hard to talk to anyone at all. If I tell you about my sleepy weekend or mention that I have blood work scheduled for today, you’ll probably want to know the details, but I’m not comfortable talking about more.
I’m a good listener, but hard-pressed lately to feign interest in people with whom I have no real emotional connection. That kind of relationship should be a two-way arrangement, but I’ve found that very, very few people are willing to give as they get.
I am lonely and I feel emotionally isolated. I have nobody to talk to anymore. I have no right to complain, I understand that. This is a situation I created around myself when I fired my former friends; now, I have to live with the consequences. Since I’m not interested in finding new friends, there seems to be no solution.
All too often, we only skim the surface of people. The surface is safe. Superficiality entails no risk, be it emotional or in challenging thought. If you really go deep with people, you might be exposed to ideas and realities that are just too intimidating and uncomfortable to cozy up to. I’m not willing to go either way on that two-way street right now. Not only can’t you come in (although I’m sure you weren’t planning to try), I can’t listen to you, either, if it means I might have to expose myself in the process.
Is there a solution to this conundrum? If I stop talking, can I stop feeling, as well? I think that’s the only way this is going to work for me. If I can eliminate emotion from myself, then I won’t have anything left to say beyond facts—information, nothing more. Actually, a lack of mood, a lack of emotion would take care of a whole pile of life’s snags for me.
Mr. Spock. Data. Witty, insightful...emotionally unendowed. Perfect.
I do not regret my decision to trim down the number of people in my life. It was a healthy and necessary decision. In addition, I’ve also found it necessary to dramatically cut back on how much interaction I have with coworkers and other peripheral people in my life. I can’t pretend that these are true friendships anymore. My doctor once told me that friends are friends and coworkers are coworkers, and it would benefit me to not confuse the two. In other words, the friendships you have at work are actually nothing more than surface relationships, and to go further, you run a hazardous risk of exposing your most personal secrets in a much more public arena.
Again, it’s OK. I am comfortable enough with myself that I don’t need to validate my worth by way of the number of people who are close to me or vice versa. Here’s the thing, though. When you partition off the different parts of your life with such severity, it becomes hard to talk to anyone at all. If I tell you about my sleepy weekend or mention that I have blood work scheduled for today, you’ll probably want to know the details, but I’m not comfortable talking about more.
I’m a good listener, but hard-pressed lately to feign interest in people with whom I have no real emotional connection. That kind of relationship should be a two-way arrangement, but I’ve found that very, very few people are willing to give as they get.
I am lonely and I feel emotionally isolated. I have nobody to talk to anymore. I have no right to complain, I understand that. This is a situation I created around myself when I fired my former friends; now, I have to live with the consequences. Since I’m not interested in finding new friends, there seems to be no solution.
All too often, we only skim the surface of people. The surface is safe. Superficiality entails no risk, be it emotional or in challenging thought. If you really go deep with people, you might be exposed to ideas and realities that are just too intimidating and uncomfortable to cozy up to. I’m not willing to go either way on that two-way street right now. Not only can’t you come in (although I’m sure you weren’t planning to try), I can’t listen to you, either, if it means I might have to expose myself in the process.
Is there a solution to this conundrum? If I stop talking, can I stop feeling, as well? I think that’s the only way this is going to work for me. If I can eliminate emotion from myself, then I won’t have anything left to say beyond facts—information, nothing more. Actually, a lack of mood, a lack of emotion would take care of a whole pile of life’s snags for me.
Mr. Spock. Data. Witty, insightful...emotionally unendowed. Perfect.
Monday, July 9, 2007
Suicide may or may not be painless, but if it's not yours, stay out of it
Have you ever reached a point in your life where you felt like the only reasonable option for you was to end your life? Maybe it was a wisp of a thought, flitting through a troubled mind; maybe you were truly desperate. Then again, maybe you realized that killing yourself was not only possible, but just one of several viable and completely valid avenues available to you.
We are culturally programmed to find the very thought of suicide--our or anyone else's--abhorrent. For some, the stigma is enough to hold off from committing suicide. For others, religious conviction keeps the desire in check. Then there are the 30,000 Americans per year who go ahead and get it over with. Who are we to argue about that extremely personal choice? For the past couple of years, thoughts of my own possible suicide have come and gone with unnerving frequency. I have spent countless hours trying to understand the psychological and biological factors that cause these thoughts, as well as the things that keep the impulse contained. At the end of all of my reading and questioning, I learned that the decision is ultimately a choice to end unbearable pain or to avoid a future of hopelessness or suffering. Why anyone thinks that these feelings are so invalid that they have the right to interfere with another person's end-of-life decisions is a mystery to me.
Several years ago, a coworker lost his wife in a tragic car accident. My coworker's son had been at the wheel, and in a split-second of poor judgment, he made what turned out to be a fatal left turn at an intersection. My coworker's wife was killed instantly, and my coworker himself was seriously injured, his body a collection of shattered bones and bruised organs. The driver, the son, had no physical injuries, but the psychological trauma caused him to suffer without relief until just a few days ago. After years of unmitigated guilt, loss, and emotional devastation, he reached his breaking point and took his own life. Having been strong in his conviction, he made sure to do it right on the first try. At work, everyone was shocked and deeply rattled, deeming this event a tragedy, a tragedy of the worst kind. I'm inclined not to agree. My coworker--the father of the young man who died--is suffering this loss terribly, and that is understandable. Still, his son was obviously not recovering from the accident, even years later. Where were all of the people who are now mourning him? Why did they feel he needed to be strong and move forward, yet nobody was there to comfort him along the way? Why is it considered the right thing to "live with what you did," but so wrong to die when that very event causes intolerable emotional pain? America hates a quitter is my take on this paradox.
When my coworker's wife died in the car accident, there were cards, phone calls, cooking, and a barrage of condolences for the surviving members of the family. This time, people have been avoiding my coworker with their eyes downcast, mumbling mundane greetings as they hurry by in the hall. It's as if people perceive a suicide as a shameful act even more than a tragic one. They whisper about it as if the young man died while engaged in a sordid activity. Death is death. There is no shame in death. I'll concede tragedy, maybe. Kids get killed by drunk drivers, innocents are murdered, a baby falls from a balcony; that's tragedy. Death is inevitable and has many causes. Suicide is only one of them, and it is a decision, a personal choice, no different than the cancer patient who forgoes treatment, or the heavy smoker who gets lung cancer, or the morbidly obese man who just keeps rolling on his bed, eating and waiting for congestive heart failure to claim him at last. Unhealthy choices, yes. Shameful? No. The end of something unpleasant? What's the problem with that? Why would you have us stay alive with no end to the suffering? What's the benefit?
I don't think there's anything wrong with a person who makes a conscious choice to stop the madness and pain in his or her life. I would be furious and flat-out hostile if someone interrupted me that way. Suicide ideation, planning, or completion do not necessarily indicate the presence of severe mental illness. That's an arrogant and irrational assumption based on one's views about their own preferences for end-of-life decisions. Being comfortable with death--even welcoming it--may show an inner peace and wisdom that most people can't understand. Probably because they shut down at the mere mention of death and because they can't imagine their own demise, they assume you are mistaken in planning for your own.
Can 30,000 Americans per year all be wrong and irrational?
We are culturally programmed to find the very thought of suicide--our or anyone else's--abhorrent. For some, the stigma is enough to hold off from committing suicide. For others, religious conviction keeps the desire in check. Then there are the 30,000 Americans per year who go ahead and get it over with. Who are we to argue about that extremely personal choice? For the past couple of years, thoughts of my own possible suicide have come and gone with unnerving frequency. I have spent countless hours trying to understand the psychological and biological factors that cause these thoughts, as well as the things that keep the impulse contained. At the end of all of my reading and questioning, I learned that the decision is ultimately a choice to end unbearable pain or to avoid a future of hopelessness or suffering. Why anyone thinks that these feelings are so invalid that they have the right to interfere with another person's end-of-life decisions is a mystery to me.
Several years ago, a coworker lost his wife in a tragic car accident. My coworker's son had been at the wheel, and in a split-second of poor judgment, he made what turned out to be a fatal left turn at an intersection. My coworker's wife was killed instantly, and my coworker himself was seriously injured, his body a collection of shattered bones and bruised organs. The driver, the son, had no physical injuries, but the psychological trauma caused him to suffer without relief until just a few days ago. After years of unmitigated guilt, loss, and emotional devastation, he reached his breaking point and took his own life. Having been strong in his conviction, he made sure to do it right on the first try. At work, everyone was shocked and deeply rattled, deeming this event a tragedy, a tragedy of the worst kind. I'm inclined not to agree. My coworker--the father of the young man who died--is suffering this loss terribly, and that is understandable. Still, his son was obviously not recovering from the accident, even years later. Where were all of the people who are now mourning him? Why did they feel he needed to be strong and move forward, yet nobody was there to comfort him along the way? Why is it considered the right thing to "live with what you did," but so wrong to die when that very event causes intolerable emotional pain? America hates a quitter is my take on this paradox.
When my coworker's wife died in the car accident, there were cards, phone calls, cooking, and a barrage of condolences for the surviving members of the family. This time, people have been avoiding my coworker with their eyes downcast, mumbling mundane greetings as they hurry by in the hall. It's as if people perceive a suicide as a shameful act even more than a tragic one. They whisper about it as if the young man died while engaged in a sordid activity. Death is death. There is no shame in death. I'll concede tragedy, maybe. Kids get killed by drunk drivers, innocents are murdered, a baby falls from a balcony; that's tragedy. Death is inevitable and has many causes. Suicide is only one of them, and it is a decision, a personal choice, no different than the cancer patient who forgoes treatment, or the heavy smoker who gets lung cancer, or the morbidly obese man who just keeps rolling on his bed, eating and waiting for congestive heart failure to claim him at last. Unhealthy choices, yes. Shameful? No. The end of something unpleasant? What's the problem with that? Why would you have us stay alive with no end to the suffering? What's the benefit?
I don't think there's anything wrong with a person who makes a conscious choice to stop the madness and pain in his or her life. I would be furious and flat-out hostile if someone interrupted me that way. Suicide ideation, planning, or completion do not necessarily indicate the presence of severe mental illness. That's an arrogant and irrational assumption based on one's views about their own preferences for end-of-life decisions. Being comfortable with death--even welcoming it--may show an inner peace and wisdom that most people can't understand. Probably because they shut down at the mere mention of death and because they can't imagine their own demise, they assume you are mistaken in planning for your own.
Can 30,000 Americans per year all be wrong and irrational?
Sunday, July 8, 2007
But it’s not all in my head
How many ways do you know to say that someone is mentally ill? Crazy. Whacko. Nuts. Nut job. Loony. Bonkers. Batty. Cracked. Cuckoo. Demented. Deranged. Insane. Mental. Unbalanced. Mad. Psycho. Unhinged. To name a few.
How many ways do you say that someone has diabetes? How about to say that someone has epilepsy? Lupus? Arthritis? Cerebral palsy? Psoriasis? Asthma?
I detest the term mental illness. It is filled not only with stigma, but with the implication that no matter what a person’s symptoms, the MI diagnosis immediately negates any credibility of the person having an actual illness. Why have we semantically and culturally separated illness into two classes, one containing conditions of so-called legitimate health and the other being a collection of maladies considered to be shameful, willful, and self-induced?
Most mental illness is very much biological in nature; a clear genetic link also exists in many cases. Yet, if you say that diabetes runs in your family, you are likely to be met with a response that embodies sympathy and concern. Try the same approach with schizophrenia or bipolar disorder, and the recipient of that news is more likely to be horrified than anything else. It is a type of cultural cooties best kept to ourselves.
If you tell someone you are very sick with a neurological disorder, as I often do, you will probably have the opportunity to answer plenty of questions about brain function and malfunction, medications, lifestyle implications, and more. If you change it up and say you are very ill with a brain malfunction and then continue on and say you have bipolar disorder, get ready for the eye roll and shrug accompanied by, “Oh, is that all? I thought you were actually sick.”
Comedian Richard Jeni died recently. It was no secret that he committed suicide as his family was very frank about releasing this fact to the public. His parents wanted people to know that their son had suffered terribly and that they were not ashamed of his death. Instead, they saw it as the tragic result of treatment that didn’t work—at least, not fast enough. This week, for whatever reason, the coroner’s report came out. Jeni blew half his head off with a gun. The cause of death seemed pretty obvious. Still, the report was made public, and on CNN’s Website, the headline read simply, “Jeni had severe mental illness.” As if that just explains everything. That’s all you need to know. He was mentally ill, so he killed himself.
What if they had said, “Jeni suffered from chronic illness and could no longer tolerate the symptoms and depression it caused.” No such semantic finesse happened anywhere in the press in this case. There is no drama in illness, but the underlying implications of mental illness are fraught with sordidness. We mentally ill are sordid people.
We are second-class citizens in the health world. Insurance companies don’t feel they need to treat us (lack of mental health care parity is just an extra slap in the face). Employers have no impetus to cut us any slack or make accommodation. Culturally, it is perfectly OK to mock us. Mental illness is the stuff of sitcoms and stand-up routines, shocking news reports, and Law and Order-type dramas.
Why are those of us who have “mental” illness held to a different level of behavioral accountability than someone who, for example, suffers from an insulin reaction that causes erratic behavior? A couple of weeks ago, a man was kicked off of an Amtrak train in a rural area. He was disoriented and talking to himself. The conductors concluded he must be drunk or on drugs, and they removed him from the train. The outcry was swift when the story hit the press. “That poor man! He is diabetic! How could you?”
I wonder if the compassionate reaction would have been the same had the man had bipolar disorder or schizophrenia as his diagnosis instead.
I am not crazy, whacko, nuts, a nut job, loony, bonkers, batty, cracked, cuckoo, demented, deranged, insane, mental, unbalanced, mad, psycho, or unhinged. I am ill and I did nothing to cause my condition.
I can’t control the short circuits and chemical mix-ups in my brain, desperately as I wish I could. I didn’t ask to have BP, and I’ve certainly learned firsthand how awful and insidious an illness it is. It is doubly cruel in that it affects me with both physical limitations and cognitive/behavioral ones, as well.
I propose that we eradicate the term “mental illness” from all languages. I have an illness, plain and simple. It requires medication and lifestyle changes if it is to be managed. It is not a defect of thinking; it is a malfunction of the brain.
I vote for Neurobehavioral Illness.
How many ways do you say that someone has diabetes? How about to say that someone has epilepsy? Lupus? Arthritis? Cerebral palsy? Psoriasis? Asthma?
I detest the term mental illness. It is filled not only with stigma, but with the implication that no matter what a person’s symptoms, the MI diagnosis immediately negates any credibility of the person having an actual illness. Why have we semantically and culturally separated illness into two classes, one containing conditions of so-called legitimate health and the other being a collection of maladies considered to be shameful, willful, and self-induced?
Most mental illness is very much biological in nature; a clear genetic link also exists in many cases. Yet, if you say that diabetes runs in your family, you are likely to be met with a response that embodies sympathy and concern. Try the same approach with schizophrenia or bipolar disorder, and the recipient of that news is more likely to be horrified than anything else. It is a type of cultural cooties best kept to ourselves.
If you tell someone you are very sick with a neurological disorder, as I often do, you will probably have the opportunity to answer plenty of questions about brain function and malfunction, medications, lifestyle implications, and more. If you change it up and say you are very ill with a brain malfunction and then continue on and say you have bipolar disorder, get ready for the eye roll and shrug accompanied by, “Oh, is that all? I thought you were actually sick.”
Comedian Richard Jeni died recently. It was no secret that he committed suicide as his family was very frank about releasing this fact to the public. His parents wanted people to know that their son had suffered terribly and that they were not ashamed of his death. Instead, they saw it as the tragic result of treatment that didn’t work—at least, not fast enough. This week, for whatever reason, the coroner’s report came out. Jeni blew half his head off with a gun. The cause of death seemed pretty obvious. Still, the report was made public, and on CNN’s Website, the headline read simply, “Jeni had severe mental illness.” As if that just explains everything. That’s all you need to know. He was mentally ill, so he killed himself.
What if they had said, “Jeni suffered from chronic illness and could no longer tolerate the symptoms and depression it caused.” No such semantic finesse happened anywhere in the press in this case. There is no drama in illness, but the underlying implications of mental illness are fraught with sordidness. We mentally ill are sordid people.
We are second-class citizens in the health world. Insurance companies don’t feel they need to treat us (lack of mental health care parity is just an extra slap in the face). Employers have no impetus to cut us any slack or make accommodation. Culturally, it is perfectly OK to mock us. Mental illness is the stuff of sitcoms and stand-up routines, shocking news reports, and Law and Order-type dramas.
Why are those of us who have “mental” illness held to a different level of behavioral accountability than someone who, for example, suffers from an insulin reaction that causes erratic behavior? A couple of weeks ago, a man was kicked off of an Amtrak train in a rural area. He was disoriented and talking to himself. The conductors concluded he must be drunk or on drugs, and they removed him from the train. The outcry was swift when the story hit the press. “That poor man! He is diabetic! How could you?”
I wonder if the compassionate reaction would have been the same had the man had bipolar disorder or schizophrenia as his diagnosis instead.
I am not crazy, whacko, nuts, a nut job, loony, bonkers, batty, cracked, cuckoo, demented, deranged, insane, mental, unbalanced, mad, psycho, or unhinged. I am ill and I did nothing to cause my condition.
I can’t control the short circuits and chemical mix-ups in my brain, desperately as I wish I could. I didn’t ask to have BP, and I’ve certainly learned firsthand how awful and insidious an illness it is. It is doubly cruel in that it affects me with both physical limitations and cognitive/behavioral ones, as well.
I propose that we eradicate the term “mental illness” from all languages. I have an illness, plain and simple. It requires medication and lifestyle changes if it is to be managed. It is not a defect of thinking; it is a malfunction of the brain.
I vote for Neurobehavioral Illness.
Wednesday, July 4, 2007
Bliss
Refugee kids are amazing. They come here with their parents after living in dangerous and often squalid conditions, and then, without missing a beat, they thrive. Their parents struggle with the cultural and lifestyle adjustments, but the kids hit the ground running.Yesterday I had an appointment to meet with a Somali Bantu woman who had requested help learning English. The volunteer tutor and I arrived at about 5:30 only to find that Sharifo, the student, wasn’t home.
Sharifo and her family live in the projects. I suppose the politically correct term is “public housing,” but that’s just semantics. The complex is a sprawling maze of brick-front, two-story units, ten homes to a block. There used to be grass on the front lawn, but it has, for the most part, given up its struggle to grow. Too many feet stray from the sidewalk, and too many children run across the dusty patches of gravelly soil.
While the volunteer and I stood at Sharifo’s door, children playing on the swing set next door stared at us. Eventually, three Somali kids—all under the age of ten—came over to investigate.
“He’s not home,” a waif-thin girl of about declared. “He’s not here now.”
I told her I was looking for a “she,” for Sharifo. A boy of about six piped up, “Maybe she’s, um, she’s down there.” He pointed down the impossibly long row of identical units. He may have been indicating that Sharifo was on the next block, but he couldn’t remember which house he was talking about. He tilted his head and rolled his eyes back. His eyes came forward again, but his lids remained at half-mast. “Buddy,” I said, “You look drunk.”
The tutor laughed nervously, and the boy grabbed her hand and pulled himself against her. “Why are you here?” he asked her.
“I’m here to help Sharifo learn English, but she’s not home.”
The oldest girl leaned across from the front stoop and poked her hand through the torn and disconnected window screen of Sharifo’s front room window. On tiptoes, the girl, Amina, peered in the window and said, “I can’t see anybody. Did you knock?”By now, we were attracting attention, and at least a half-dozen kids had abandoned the playground area so they could get a closer look at us. I asked the tutor if she wanted to wait for awhile, and she said it was no problem. One of the kids took off to ask her mother if she had information about Sharifo’s whereabouts.
A little girl, who appeared to be about four years old, slid up against me and held my hand. Her hair was haphazardly braided into lumpy cornrows. “What’s your name? I asked. “Binti.” It was almost a whisper. “Binti? I think that means daughter.” She pressed her weight against my side, and then stepped back to stare at us some more.
I looked at the tutor, and another little girl was trying to look through the woman’s purse. She looked at me and said with mild panic, “I’m not sure what to do. I never babysat when I was a teenager.” I laughed. “Watch,” I said. "I know how to get everyone’s attention."
I pulled out my cell phone and flipped it open. I pushed the button for the camera feature and hoped that I could remember how to use it. I took Binti’s picture, and showed it to her. For the next twenty minutes, Jessica and I snapped pictures with our cell phones. We took pictures of kids laughing, dancing, jumping, smiling, posing, being silly, and much to my horror, flashing gang symbols.
Next door, a group of teenagers played with firecrackers. I jumped every time a firecracker snapped on the tired lawn. The kids didn’t care for the noise much, either.
At some point, I gave piggyback rides, held hands and moved in a circle without any recitation of Ring Around the Rosie, and took more pictures. We tickled, we cuddled, we spun. There was a moment, a crystalized moment, when I looked at the kids and realized that they were totally lacking in self-consciousness. They hadn’t yet been made aware that they were poor, that they were immigrants, or that they were living in a very bad neighborhood. For now, they are the embodiment of pure happiness. Bliss. And dirt. Every one of these kids, in their mismatched outfits and sporting bare, callused feet, was filthy. Their clothes looked as if they could never be laundered clean again, and as a group, they looked like the “before” scenario for some kind of extreme Tide commercial. They had no idea, and in the early July heat, it just didn't matter.
The littlest boy’s short-sleeved, plaid shirt was completely unbuttoned and inside out. I told him, but he misunderstood. He took off the shirt and turned it around so the buttons were in the back. I tried to help him, but once his shirt was off completely, he squealed with laughter and refused to let me work his left arm back into the sleeve. I had the advantage of size, and eventually I won the struggle.
The wind picked up and large swirls of dust made us squint and turn toward the building. Fat raindrops started to freckle the sidewalk, and I decided we had waited for Sharifo long enough. She has a critically ill infant, and I assumed she was once again spending the evening at Children’s Hospital.
At some point, I gave piggyback rides, held hands and moved in a circle without any recitation of Ring Around the Rosie, and took more pictures. We tickled, we cuddled, we spun. There was a moment, a crystalized moment, when I looked at the kids and realized that they were totally lacking in self-consciousness. They hadn’t yet been made aware that they were poor, that they were immigrants, or that they were living in a very bad neighborhood. For now, they are the embodiment of pure happiness. Bliss. And dirt. Every one of these kids, in their mismatched outfits and sporting bare, callused feet, was filthy. Their clothes looked as if they could never be laundered clean again, and as a group, they looked like the “before” scenario for some kind of extreme Tide commercial. They had no idea, and in the early July heat, it just didn't matter.
The littlest boy’s short-sleeved, plaid shirt was completely unbuttoned and inside out. I told him, but he misunderstood. He took off the shirt and turned it around so the buttons were in the back. I tried to help him, but once his shirt was off completely, he squealed with laughter and refused to let me work his left arm back into the sleeve. I had the advantage of size, and eventually I won the struggle.
The wind picked up and large swirls of dust made us squint and turn toward the building. Fat raindrops started to freckle the sidewalk, and I decided we had waited for Sharifo long enough. She has a critically ill infant, and I assumed she was once again spending the evening at Children’s Hospital.
Just as Jessica and I started to walk away—amid loud protests from our new friends—a chubby Mexican girl (the bossiest of the bunch) ran over to us, out of breath from the effort. “They’re here! They’re home! Look!” She pointed toward the back of the building where a white mini-van was surrounded by very small children. A tiny girl wearing a dark hijab was struggling with a jumbo-pack of paper towels. Another boy, barely out of the toddler stage, was carrying a 24-pack of ramen noodles. Sharifo had apparently been made aware of our presence, and she came around the side of the building to see what we wanted.
I introduced myself and reminded her we had spoken on the phone—about English. She looked exhausted, but in a flash her demeanor went from all business to delight. “Ooooo. Yes, my teacher! Come in, come in!”
As we entered the front door, our audience of pintsize onlookers gathered at the window to see what we were up to. Necks craned, teetering off the concrete platform at the front step, it turned out nobody was tall enough to see through that tattered window screen after all.
I wrote earlier that I don’t have kids, but while I waited for Sharifo, I was able to connect—if only for an hour—with the Somali kids and with the part of myself that remembered how to be silly, how to spin, and how to enjoy just playing on the dirt-mottled lawn without even considering what anybody thought about me. What a relief.
It was fun.
Because I said so, that's why.
I don’t have children, and let me be clear: It’s because I never wanted any. It took a lot of tries before I found a man who felt the same way, but find him I did, and we live contentedly child-free.
I don’t dislike children on principle, but I know my limits both emotionally and organizationally, and it would have been grossly irresponsible on my part to have attempted parenthood. This is a sentiment that, when expressed openly, immediately makes other people (usually parents themselves) insist that I would have been a wonderful mother, an excellent parent, and the producer of very smart offspring. This only proves to what degree they don’t really know me. Some people were never meant to be parents, and I am one of them.
This wasn’t a decision I came to late in life; in fact, it was something I knew in my early teens. At that time, I babysat a lot. By “a lot,” I mean I babysat in what seemed like every waking moment that I wasn’t in school. I loved the money, but couldn’t relate to the kids. I didn’t tell stories or play games mostly because it never occurred to me that this is what one does in the presence of small children. There was just no connection for me whatsoever—a fact that never changed with exposure or with age. It’s possible I couldn’t entertain children because I never thought like one myself, even when I was a child.
Of course, by my late teens, I knew there was something terribly wrong with me as a human being, and although I didn’t know the source of my defect, I knew it should never, ever be passed onto another person. It was a conviction I could not be talked out of then and never could going forward. I have great respect for genetics, and I do not harbor the kind of hubris that would have me procreate to continue my lineage rather than not procreate in the name of preventing more suffering in the world. Have I made worthwhile contributions to the world? Maybe. Small ones here and there, I’m sure. Don’t we all do that? I am average—just as average as about, say 33% of the population (the other 66% being above or below average, in case your math skills didn’t kick in while reading that). I am so average that I do not see and never have identified anything so extraordinary in myself that reproduction would be a positive contribution to the world.
I don’t know how people with BP manage families. Maybe they end up with terribly broken or dysfunctional families. A good portion of my life has been skewered by the warped perceptions and erratic moods inherent to BP. I honestly believe that had I opted for parenthood, any children I had would have been forcibly taken from my home years ago. In the end, I prefer to be criticized for not having children than to be vilified for having unwanted children I could not care for. There is no social demon quite like the woman who is accused of failing in motherhood.
Why do people feel they must argue the point of another person’s decision to remain childless? Do they doubt their own choice to have children and need validation by seeing others choose likewise? Do they honestly believe we have a biological mandate to reproduce? Do they just want to see somebody suffer through an unwanted experience? I don’t know the answer, but for the past 20 years, I have had to defend my decision, and frankly, I’m tired of it.
I don’t have kids because I didn’t want any. I don’t regret my decision and I never have, not for a second. It doesn’t mean I’m selfish. Selfish is having children to satisfy your own egotistical need to pass on your DNA. Selfish is having children because you think you should and not because raising a family is something you are passionate about. Selfish is having a child you aren’t all that interested in. I could say it’s selfish to have a kid even though you know you have a genetic defect that could be passed on and it could cause untold pain and suffering for that child, but that’s not really selfish; that’s irresponsible. End of argument.
I don’t dislike children on principle, but I know my limits both emotionally and organizationally, and it would have been grossly irresponsible on my part to have attempted parenthood. This is a sentiment that, when expressed openly, immediately makes other people (usually parents themselves) insist that I would have been a wonderful mother, an excellent parent, and the producer of very smart offspring. This only proves to what degree they don’t really know me. Some people were never meant to be parents, and I am one of them.
This wasn’t a decision I came to late in life; in fact, it was something I knew in my early teens. At that time, I babysat a lot. By “a lot,” I mean I babysat in what seemed like every waking moment that I wasn’t in school. I loved the money, but couldn’t relate to the kids. I didn’t tell stories or play games mostly because it never occurred to me that this is what one does in the presence of small children. There was just no connection for me whatsoever—a fact that never changed with exposure or with age. It’s possible I couldn’t entertain children because I never thought like one myself, even when I was a child.
Of course, by my late teens, I knew there was something terribly wrong with me as a human being, and although I didn’t know the source of my defect, I knew it should never, ever be passed onto another person. It was a conviction I could not be talked out of then and never could going forward. I have great respect for genetics, and I do not harbor the kind of hubris that would have me procreate to continue my lineage rather than not procreate in the name of preventing more suffering in the world. Have I made worthwhile contributions to the world? Maybe. Small ones here and there, I’m sure. Don’t we all do that? I am average—just as average as about, say 33% of the population (the other 66% being above or below average, in case your math skills didn’t kick in while reading that). I am so average that I do not see and never have identified anything so extraordinary in myself that reproduction would be a positive contribution to the world.
I don’t know how people with BP manage families. Maybe they end up with terribly broken or dysfunctional families. A good portion of my life has been skewered by the warped perceptions and erratic moods inherent to BP. I honestly believe that had I opted for parenthood, any children I had would have been forcibly taken from my home years ago. In the end, I prefer to be criticized for not having children than to be vilified for having unwanted children I could not care for. There is no social demon quite like the woman who is accused of failing in motherhood.
Why do people feel they must argue the point of another person’s decision to remain childless? Do they doubt their own choice to have children and need validation by seeing others choose likewise? Do they honestly believe we have a biological mandate to reproduce? Do they just want to see somebody suffer through an unwanted experience? I don’t know the answer, but for the past 20 years, I have had to defend my decision, and frankly, I’m tired of it.
I don’t have kids because I didn’t want any. I don’t regret my decision and I never have, not for a second. It doesn’t mean I’m selfish. Selfish is having children to satisfy your own egotistical need to pass on your DNA. Selfish is having children because you think you should and not because raising a family is something you are passionate about. Selfish is having a child you aren’t all that interested in. I could say it’s selfish to have a kid even though you know you have a genetic defect that could be passed on and it could cause untold pain and suffering for that child, but that’s not really selfish; that’s irresponsible. End of argument.
Sunday, June 17, 2007
Blessings counted
If you ever want to know who your true friends are, get sick. Let yourself be taken over by a stigmatized, difficult-to-understand illness that requires patience and compassion on the part of those around you. Perhaps you think that your friends will rally around you and share positive energy with you. They'll check in with you. They'll reassure you that they love you, warts and all. They'll send you encouraging messages and they'll call just to check in and see how you're doing. They'll tell you again and again that your wellness and survival matter a great deal because your very presence on this planet makes the world a better place. Or, you can brace yourself for what really happens.
Anyone with a neurobehavioral illness can tell you about the reality of relationships amidst the chaos of illness. While you are trying to keep yourself moving forward as you push past medication side effects, outrageous medical bills, doctor appointments, physical discomfort, and the stress of not wanting to go on, you may well find that you are walking that road alone. Very alone.
Is it human nature to abandon even the people we love when the situation becomes awkward or uncomfortable? For some people, it is. When they are used to knowing you will be there to listen, to help, to support, they are there, too. When they know they can count on you to be fun and funny, articulate, level-headed, and nurturing, they'll be there. When they know you can always come up with something interesting to do or to talk about, you will not be alone. However, you may be left grasping for explanations when you realize that if you don't fit your usual image, when you are not able to sustain the personality you have when you are well, when the going is difficult, painful, slow, and unpleasant, even the people you trust the most might bail out. Even worse, when you start to stabilize and heal, they may reappear, expecting things to be as they were before, because surely the coast is clear and your ordeal hasn't changed you a bit.
This situation isn't unique to people with neurobehavioral illness or depression. Ask anyone who has lupus, cancer, fibromyalgia, or chronic anything; all will tell you about the friends who were there and the friends who weren't anymore.
Someone told me that the reason people act this way in the face of discomfort is because they don't know what to do or say, so they fade back. They can't empathize enough to put themselves in your place because that is too frightening a thought to even contemplate. They can't imagine having to change and adapt to the new you, and anyway, it is far easier to walk away. In response to this, I say bullshit. You don't have to say the right thing or even anything at all. You just need to show your solidarity and keep reiterating that you care. Unless, as it turns out, you don't.
There is another side to this issue of friends. There is the story of those who stay, those who tenaciously hang on with you for the harrowing ride and for the long haul. In my case, I have been able to count those people on three fingers, and I am married to one of those. And then...there is a fourth person who entered my life amidst the fray, and I'll get to that in a moment.
Going through the life changes brought about by chronic illness really does set the stage for people to show their true colors. For me, much of this experience was devastating, at best, and disillusioning at least. But then, I realized that a dedicated spouse and two fearless, unshakable friends may be enough to get you through that long, dark journey of the body and soul. My love for these friends has gone to a level deeper than I ever imagined, and I know that these friends understand that despite the circumstances that have transformed me, ultimately, I am still me, despite those profound changes.
Sometimes, the cosmic forces send someone to you who you never saw coming, but who you needed more desperately than you knew. I am not religious, but I do believe in karma and cosmic blessings. When my struggle left me wrung out and wasted, I depended heavily on an Internet forum for support. Through this online community, I met one of the most special people to have ever come into my life. She didn't know me, yet she did--she understood me. She took the time to listen and to share her own experience as a means of showing me a way to understand my own. By way of the Internet and email, we became...friends. The real kind. The kind you keep, the kind you work to keep because to do otherwise would be an unconscionable waste of love.
Her birthday was this week, but I was the one who received the blessing and the gift. My newest friend came from out of state to meet me and to tell me how important this friendship is to her. We were together 12 hours, but it felt like a moment. It felt like we had always been there, together, laughing, talking, understanding. In an almost Hollywood-scripted coincidence, my other soul friend flew into town for a business trip on a moment's notice. For a short time, the visits of these two friends overlapped, and I sat there, wholly conscious of the love in my life and the blessings pouring over me. Perhaps even more importantly, at that moment, I realized I was letting go of the bitterness and anger that had twisted into my core. I could see that I no longer had any use for that kind of resentment. My friends were here, and I hoped that I would always remember to be present in their love, to never take it for granted, and to always, unfailingly give whatever I could whenever I could to be the best friend possible to these two women, my husband, and my other remaining friend, who also happens to live in a far-away state. I am responsible to hold fast to this precious treasure.
Divine providence is a thing of astounding beauty.
Anyone with a neurobehavioral illness can tell you about the reality of relationships amidst the chaos of illness. While you are trying to keep yourself moving forward as you push past medication side effects, outrageous medical bills, doctor appointments, physical discomfort, and the stress of not wanting to go on, you may well find that you are walking that road alone. Very alone.
Is it human nature to abandon even the people we love when the situation becomes awkward or uncomfortable? For some people, it is. When they are used to knowing you will be there to listen, to help, to support, they are there, too. When they know they can count on you to be fun and funny, articulate, level-headed, and nurturing, they'll be there. When they know you can always come up with something interesting to do or to talk about, you will not be alone. However, you may be left grasping for explanations when you realize that if you don't fit your usual image, when you are not able to sustain the personality you have when you are well, when the going is difficult, painful, slow, and unpleasant, even the people you trust the most might bail out. Even worse, when you start to stabilize and heal, they may reappear, expecting things to be as they were before, because surely the coast is clear and your ordeal hasn't changed you a bit.
This situation isn't unique to people with neurobehavioral illness or depression. Ask anyone who has lupus, cancer, fibromyalgia, or chronic anything; all will tell you about the friends who were there and the friends who weren't anymore.
Someone told me that the reason people act this way in the face of discomfort is because they don't know what to do or say, so they fade back. They can't empathize enough to put themselves in your place because that is too frightening a thought to even contemplate. They can't imagine having to change and adapt to the new you, and anyway, it is far easier to walk away. In response to this, I say bullshit. You don't have to say the right thing or even anything at all. You just need to show your solidarity and keep reiterating that you care. Unless, as it turns out, you don't.
There is another side to this issue of friends. There is the story of those who stay, those who tenaciously hang on with you for the harrowing ride and for the long haul. In my case, I have been able to count those people on three fingers, and I am married to one of those. And then...there is a fourth person who entered my life amidst the fray, and I'll get to that in a moment.
Going through the life changes brought about by chronic illness really does set the stage for people to show their true colors. For me, much of this experience was devastating, at best, and disillusioning at least. But then, I realized that a dedicated spouse and two fearless, unshakable friends may be enough to get you through that long, dark journey of the body and soul. My love for these friends has gone to a level deeper than I ever imagined, and I know that these friends understand that despite the circumstances that have transformed me, ultimately, I am still me, despite those profound changes.
Sometimes, the cosmic forces send someone to you who you never saw coming, but who you needed more desperately than you knew. I am not religious, but I do believe in karma and cosmic blessings. When my struggle left me wrung out and wasted, I depended heavily on an Internet forum for support. Through this online community, I met one of the most special people to have ever come into my life. She didn't know me, yet she did--she understood me. She took the time to listen and to share her own experience as a means of showing me a way to understand my own. By way of the Internet and email, we became...friends. The real kind. The kind you keep, the kind you work to keep because to do otherwise would be an unconscionable waste of love.
Her birthday was this week, but I was the one who received the blessing and the gift. My newest friend came from out of state to meet me and to tell me how important this friendship is to her. We were together 12 hours, but it felt like a moment. It felt like we had always been there, together, laughing, talking, understanding. In an almost Hollywood-scripted coincidence, my other soul friend flew into town for a business trip on a moment's notice. For a short time, the visits of these two friends overlapped, and I sat there, wholly conscious of the love in my life and the blessings pouring over me. Perhaps even more importantly, at that moment, I realized I was letting go of the bitterness and anger that had twisted into my core. I could see that I no longer had any use for that kind of resentment. My friends were here, and I hoped that I would always remember to be present in their love, to never take it for granted, and to always, unfailingly give whatever I could whenever I could to be the best friend possible to these two women, my husband, and my other remaining friend, who also happens to live in a far-away state. I am responsible to hold fast to this precious treasure.
Divine providence is a thing of astounding beauty.
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