Twenty years ago, before I was a nurse--before I had even started nursing school--I was at a used bookstore. I saw a title that intrigued me: "The Man Who Mistook His Wife For A Hat."
It was my introduction to Oliver Sacks. It was the beginning of a relationship, however one-sided, that got me into nursing, got me into neuroscience, and has kept me there for more than a decade.
Oliver Sacks was a walking contradiction: he was on the Asperger's spectrum, as he diagnosed himself, yet he was able to interact with his patients in such a way as to humanize even the most disabled person. He was obsessive, by his own admission; yet, he translated his obsessions into ordinary-person-friendly tales of his life as a doctor and the lives of his patients. He was incredibly learned, but never resorted to jargon when simple English would do. He was shy, but he put himself out to the public in a series of books about his practice and his life that showed us as much about ourselves as it did him.
The one true regret I have--after divorce, after cancer, after lost friends and relatives--is that I never got to sit down and listen to him talk. Just ramble, or expound on one of his favorite subjects, whether it was music or the periodic table or his days as a weightlifter on Muscle Beach. It wouldn't have mattered; I felt that close to him through reading his work.
It's important to remember that Dr. Sacks made most of his diagnoses and discoveries in the days before functional MRI or good CT scanning. Many times, the only four tools in his toolkit were clinical observation, x-ray, surgical biopsy, and a technique of pumping air into the brain in order to determine if a large mass were taking up space somewhere.
Of those four, his clinical observations were the most precise and flexible. Dr. Sacks taught me, through reading his books, to ask questions that went beyond the normal, prescribed neurological exam. He showed me what it was to sit down with a patient, to see how they ate, how they walked, how they interacted with the world in a functional way, rather than in a formalized exam.
Most of all, he taught me to see my patients as people. First and last, no matter the pathology in the brain, it is a person that we treat. That person never completely disappears; she's never totally lost to the disease or accident that might have claimed speech or reasoning.
For that, I am immensely grateful. Thank you, Dr. Sacks, for getting me into this insane, messy, endlessly fascinating and entertaining business of working with the human brain. Thank you for showing me the way that the brain informs and interacts with the mind. And thank you for translating your experiences into stories that anyone could understand, could follow, and be immersed in.
I owe you a lot. Your patients owe you a lot. The field of neurology owes you an immeasurable debt.
May it be indigo forever, from here on out.
Oliver Sacks, 1933-2015
Sunday, August 30, 2015
Friday, August 21, 2015
Things Mongo will eat.
This is Mongo.
Mongo will eat many things, mostly things that you will also eat. Here is a partial list, to date, of Things Mongo Will Eat.
1. Raspberries, strawberries, blackberries.
2. Nectarines, peaches, grapefruit, oranges, and bananas.
3. Mango.
4. Broccoli, cauliflower, potato (raw or cooked), bean sprouts.
5. Watermelon.
6. Candy. Mongo loves candy.
7. Corrugated cardboard, with or without glue on it.
8. Raw turnips.
9. Radishes.
10. Avocado, but only once and by mistake.
11. Beans of any sort, but not too many.
12. Carrots, zucchini, cucumber, cornichon pickles, sweet peppers, onion (again, only once and by mistake, because they are poisonous).
13. Any nut you could name including coconut.
14. Jackfruit
15. The little white shreddy things in the jackfruit.
16. Socks and underwear.
17. Fruitless mulberry leaves.
18. His own shed hair.
19. Newspaper.
20. Those cornstarch packing peanuts.
21. The latest copy of "Vanity Fair."
22. An old pair of boots.
23. Flesh, fowl, and good red herring.
24. An arrangement of sunflowers I got from the farmer's market.
25. Spinach, lettuce, turnip greens, collard greens, and radish sprouts.
26. Two of my best eyeshadow brushes.
27. The neighbor's pair of water-wings after they blew into the yard.
28. The bags that newspapers come in.
29. Toenail clippings (his own and others').
30. Dryer lint.
31. A Samsung Galaxy 5S.
32. The stylus from my Boogieboard.
33. Ice cream.
34. Coffee grounds.
35. Bitter melon.
36. Black radishes, yucca root, and jicama.
37. Famotidine, still in its blister packaging.
38. The cap from a vial of heparin.
39. Brussels sprouts, with or without butter sauce.
40. Vicks Vapo-Rub.
Anything, in short, except Pink (pictured above). Pink is three years old and is still in amazing shape.
Thursday, August 06, 2015
Tips for Jenna, my pal with the CANSUH
If you've read me for any length of time, you'll know that CANSUH is much different from cancer.
Cancer eats at your soul. It makes you sleep badly at night. You worry about it recurring.
CANSUH allows you to laugh at your disease. It narrates everything in a William Shatner voice. It lives in its parents' basement.
Cancer has horrible treatments, burning and cutting. CANSUH acknowledges that, and further, it gives you permission to bitch about the process.
Cancer demands that you be noble. CANSUH allows you to say "FUCK."
So, for Jenna with the crappy-ass, un-identifiable tumor, I offer the following, gleaned from my own and others' experiences:
1. If anybody starts a sentence with the words "My (aunt/cousin/relative/friend in Backobeyondistan) had that and she/he DIED," you are allowed to caress their cheek gently with a chair.
2. Any and all food is good. You can worry about your diet later.
3. Nobody is allowed to criticize your video-viewing choices. Me, I still watch "Burlesque" on the reg and do the dance numbers and sing along, even five years later.
4. If anybody tries to tell you that it's Not That Bad, you are allowed to smile thinly (practice this in the mirror for when you need it) and thank them for their concern. Make it withering.
5. If anybody says, "You look great! You've lost weight!" or "Your haircut is so cute!" you are allowed, without shame, to say "Thanks; it came free with the chemo" or "This is the cancer diet plan" if you're feeling snarky.
6. You are allowed to grieve, no matter how many people tell you that you need to be strong, or that things could be much worse. You are allowed to howl, and curse, and feel like nobody in the world will ever understand what you're going through.
7. You are not allowed despair. It's always too early for despair. Grief is fine, and anger is good, and turning your back on the world and your faith and being truly pissed off about where life has landed you is great. Despair, though? Don't allow that. It saps your energy.
8. Pain medicine has the added bonus of making you not give a good goddamn about what you're going through. I made some of my best decisions on Dilaudid, after surgery.
9. Allow other people to take up the slack. Hire a housecleaner. Hire a babysitter. Hire somebody to cook your meals. You focus on you. I did not follow this advice and am still trying to catch up.
10. If all else fails, punch something. Installing a punching bag in the garage is not a bad idea; it'll give you some outlet, even when all you can manage is one punch. Alternatively, for the days when you're too tired to punch, practice saying "FUCK" a lot, out loud.
Cancer eats at your soul. It makes you sleep badly at night. You worry about it recurring.
CANSUH allows you to laugh at your disease. It narrates everything in a William Shatner voice. It lives in its parents' basement.
Cancer has horrible treatments, burning and cutting. CANSUH acknowledges that, and further, it gives you permission to bitch about the process.
Cancer demands that you be noble. CANSUH allows you to say "FUCK."
So, for Jenna with the crappy-ass, un-identifiable tumor, I offer the following, gleaned from my own and others' experiences:
1. If anybody starts a sentence with the words "My (aunt/cousin/relative/friend in Backobeyondistan) had that and she/he DIED," you are allowed to caress their cheek gently with a chair.
2. Any and all food is good. You can worry about your diet later.
3. Nobody is allowed to criticize your video-viewing choices. Me, I still watch "Burlesque" on the reg and do the dance numbers and sing along, even five years later.
4. If anybody tries to tell you that it's Not That Bad, you are allowed to smile thinly (practice this in the mirror for when you need it) and thank them for their concern. Make it withering.
5. If anybody says, "You look great! You've lost weight!" or "Your haircut is so cute!" you are allowed, without shame, to say "Thanks; it came free with the chemo" or "This is the cancer diet plan" if you're feeling snarky.
6. You are allowed to grieve, no matter how many people tell you that you need to be strong, or that things could be much worse. You are allowed to howl, and curse, and feel like nobody in the world will ever understand what you're going through.
7. You are not allowed despair. It's always too early for despair. Grief is fine, and anger is good, and turning your back on the world and your faith and being truly pissed off about where life has landed you is great. Despair, though? Don't allow that. It saps your energy.
8. Pain medicine has the added bonus of making you not give a good goddamn about what you're going through. I made some of my best decisions on Dilaudid, after surgery.
9. Allow other people to take up the slack. Hire a housecleaner. Hire a babysitter. Hire somebody to cook your meals. You focus on you. I did not follow this advice and am still trying to catch up.
10. If all else fails, punch something. Installing a punching bag in the garage is not a bad idea; it'll give you some outlet, even when all you can manage is one punch. Alternatively, for the days when you're too tired to punch, practice saying "FUCK" a lot, out loud.
Monday, August 03, 2015
So I have this patient.
She's young. Way younger than me, like thirty.
And she's got two kids. One about to start preschool, one just born.
And the other day, her arm quit working. And it hurt a lot. Enough that she thought it would be a good idea to go to the ED.
Where they found a tumor.
On her spine. Actually, three.
And one on her pelvic crest, and then another, right next to it. So, two more. That makes five.
And then they did another scan and found that her belly is full of tumor.
After three biopsies, all of which have been sent to places like MD Anderson and Harvard and Brigham and Women's and Johns Hopkins, nobody knows what the fuck is going on. The tumor slices aren't staining right, or are staining funny, or something. All anybody knows is that they're not ovarian cancer, or breast cancer. They're probably some sort of sarcoma; whether it's osteosarcoma or one of the more obscure soft-tissue cancers is yet to be determined.
Any way you slice it, she's an outlier.
An outlier who became my buddy while I took care of her, running steroids through her brand-new central line, in an attempt to get the inflammation around her cervical spine to calm down enough that her arm worked again.
Her arm is working fine. She's actually doing, from the view of any medical person, really well. She does her incentive spirometry faithfully, she's not constipated from her hydromorphone drip, she walks four times a day in the halls. So far, so good.
Except that she's got a couple of cervical vertebrae that the neurosurgeons are planning on cementing this week, provided nothing more goes wrong, because the bone has been totally eaten up with tumor.
And, of course, she has a belly full of tumor.
And two kids. One about to start preschool, and one who just quit breastfeeding.
And she's fifteen years younger than me.
Ask any nurse: the benchmark for disturbing cases changes as you get older. At first, the disturbing people are fifty. Then they're forty. Then they're younger than you are.
This one is enough younger than me that I could've competently changed her diapers when she was a newborn.
I'm not judging the world by my age or experience. . .but this person is my peer, yet enough younger than me that I cannot, under any circumstances, feel peaceful about her diagnosis or disease process or outcome.
Because, again, no matter how you slice it, her projected course fucking sucks.
Sarcomas in adults have some of the toughest treatment regimens out there.
I refuse to lie about it to her. When her grandmother, who's my mother's age, shows up and says "You'll beat this!" I nod. When her mother, who's barely a decade older than me, says "You'll beat this!" I nod again. And then they leave and we look at each other across the length of the bed and I say, "Well, fuck." And she nods.
I do not know what to do.
The best I can do at this point is send her links to "Poldark" and "Being Human," because Aidan Turner is just that worth watching. I post links to Foamy The Squirrel and Cute Overload on her Facebook page. I bring croissants and nail polish to work.
That is the best I can do, to be the person for whom she does not have to be Cancery McCancersons. We do nails when I can take a break, or we talk about the kids, or I show her new videos of drag queens she may not ever have seen before. And I promise that when she gets out of the hospital, we can go do non-cancery stuff, because she lives ten minutes away from me.
I hope she gets out of the hospital. I kind of doubt she will.
This is a person who, in all likelihood, will die. She is my friend. She is young, and good, and has children she ought to be able to watch grow up. And all I can do is post videos of baby otters learning to swim, and it is not enough.
It is not enough.
It's the hope that someday it will be enough that keeps us going back to work.
And she's got two kids. One about to start preschool, one just born.
And the other day, her arm quit working. And it hurt a lot. Enough that she thought it would be a good idea to go to the ED.
Where they found a tumor.
On her spine. Actually, three.
And one on her pelvic crest, and then another, right next to it. So, two more. That makes five.
And then they did another scan and found that her belly is full of tumor.
After three biopsies, all of which have been sent to places like MD Anderson and Harvard and Brigham and Women's and Johns Hopkins, nobody knows what the fuck is going on. The tumor slices aren't staining right, or are staining funny, or something. All anybody knows is that they're not ovarian cancer, or breast cancer. They're probably some sort of sarcoma; whether it's osteosarcoma or one of the more obscure soft-tissue cancers is yet to be determined.
Any way you slice it, she's an outlier.
An outlier who became my buddy while I took care of her, running steroids through her brand-new central line, in an attempt to get the inflammation around her cervical spine to calm down enough that her arm worked again.
Her arm is working fine. She's actually doing, from the view of any medical person, really well. She does her incentive spirometry faithfully, she's not constipated from her hydromorphone drip, she walks four times a day in the halls. So far, so good.
Except that she's got a couple of cervical vertebrae that the neurosurgeons are planning on cementing this week, provided nothing more goes wrong, because the bone has been totally eaten up with tumor.
And, of course, she has a belly full of tumor.
And two kids. One about to start preschool, and one who just quit breastfeeding.
And she's fifteen years younger than me.
Ask any nurse: the benchmark for disturbing cases changes as you get older. At first, the disturbing people are fifty. Then they're forty. Then they're younger than you are.
This one is enough younger than me that I could've competently changed her diapers when she was a newborn.
I'm not judging the world by my age or experience. . .but this person is my peer, yet enough younger than me that I cannot, under any circumstances, feel peaceful about her diagnosis or disease process or outcome.
Because, again, no matter how you slice it, her projected course fucking sucks.
Sarcomas in adults have some of the toughest treatment regimens out there.
I refuse to lie about it to her. When her grandmother, who's my mother's age, shows up and says "You'll beat this!" I nod. When her mother, who's barely a decade older than me, says "You'll beat this!" I nod again. And then they leave and we look at each other across the length of the bed and I say, "Well, fuck." And she nods.
I do not know what to do.
The best I can do at this point is send her links to "Poldark" and "Being Human," because Aidan Turner is just that worth watching. I post links to Foamy The Squirrel and Cute Overload on her Facebook page. I bring croissants and nail polish to work.
That is the best I can do, to be the person for whom she does not have to be Cancery McCancersons. We do nails when I can take a break, or we talk about the kids, or I show her new videos of drag queens she may not ever have seen before. And I promise that when she gets out of the hospital, we can go do non-cancery stuff, because she lives ten minutes away from me.
I hope she gets out of the hospital. I kind of doubt she will.
This is a person who, in all likelihood, will die. She is my friend. She is young, and good, and has children she ought to be able to watch grow up. And all I can do is post videos of baby otters learning to swim, and it is not enough.
It is not enough.
It's the hope that someday it will be enough that keeps us going back to work.
How To Put On Makeup For Work
Ignore this post if you're a boy. Unless you're a boy who wears makeup on the reg, in which case, skip directly to the Willam Belli tutorials below.
Makeup is an important tool in the nurse's super-nurse toolbelt. No kidding. Depending on the day you think you'll have, makeup can make the difference between going in fully-armored and going in like a freshly-hatched chick at a red-tailed hawk convention.
I live in Texas. Even though I work in the Only Liberal Enclave in Texas, I wear a full face of slap every. Damn. Day That I Work. It's armor, it's been weaponized, it's indispensable. It changes me from Jo, the civilian, to Jo, the Nurse.
First, put on some music. I recommend either the last scene of "Pitch Perfect," when the girls are kicking ass and taking names; or a medley of tunes from "West Side Story;" or maybe a whole bunch of Ingrid Michaelson, because she's the girlfriend who, while she might not wear false lashes herself, will never make you feel bad about wearing them. Skip Suzanne Vega and Brandi Carlile.
Second, get a good light. It's best if you put on makeup in a light that will make you look like a bitch-cutting drag queen in *that* light, but a perfectly-turned-out professional in the light at work. Somehow I have stumbled across this by accident, and I will never change.
Third, decide what message you want to get across. This can be broken down into categories. Observe:
a) Professional, polished, subtle.
b) One facial feature emphasized
c) Full-on cut-a-bitch, Texan high-hair, take-no-prisoners, advanced Jedi makeup
The trouble is here--and don't say I didn't give it to you straight--that the more subtle your makeup is, the more you have to make sure it's fucking perfect every time. If all you wear is a little concealer, some eyeshadow, and a coat of mascara, then you have to make sure that the concealer is matched to your skin tone, the eyeshadow isn't too matte or too shiny, and the mascara doesn't make you look all spiky without a comb-out. If you're going for the natural, no-makeup-makeup look, be prepared to spend some time on it. I don't do natural makeup primarily because it takes me three times as long as an aging-drag-queen look.
If you're going for what I wear, which is Raggedy Whore Who Needs A Drink, things are much easier. As Willam Belli (my guardian angel and inspiration) says, "Nobody gives a fuck if your eyeliner isn't even."
Now to apply makeup. I vacillate between b and c above; my usual look is natural skin, a nude lip, and eye makeup that can be seen from the ISS. We'll concentrate on eye makeup, because that is my jam. My lady jam. (That song really builds.)
1. Apply primer. The gold standard is Urban Decay's original formula. It's a lot like gessoing your eyelids, but trust me. This shizznit will keep your colors pure and your makeup from running. Put some under your lower lash line with a cotton swab.
2. Apply a base powder. You can use a neutral, skin-toned powder for this, or a very lightly-tinted eyeshadow. Smear that bastard all over your eyelid. Be generous; it'll help you blend stuff later.
3. Slap on your shadow. The usual rule is darkest in the crease and on the outside third of the eyelid, medium on the middle third of the eyelid and up above it a bit, and a pop of lightest eyeshadow on the inner third. You can disobey that usual rule however you like. Whatever you do, blend it like Beckham.
3a. If you're feeling really badass, put some tape at a 45-degree angle from the outer corner of your eye to the outside tip of your eyebrow. I use paper medical tape, but you can get away with Scotch tape if you take some of the sticky off. This will give you a mathematically precise wing with incredibly crisp edges.
4. Eyeliner. If you're feeling merciful, use a pencil, smudge it, and then run over the smudge with the same color eyeshadow. If you're not inclined to take shit, use a liquid, but don't extend it past the outer corner of the eye. If you're me, and you have to deal with exhausting morons on the daily, do Battle Wings.
4a. Battle Wings: Using your favorite powdered eyeshadow that's been liquefied with water or a setting spray, or your favorite liquid, sketch a line along your top lid, making sure it's so close to your lashes that you can't tell where they start and the line ends.
Then, following the angle of your lower lid as it goes up toward the outer corner of your eye, sketch a short line.
Meet that line from about 2/3rds of your upper lid on out. Do not be afraid if this looks like too much. It might look like too much in the mirror, but in real life, it will warn residents and family members that you will cut a bitch, because your eyeliner is the sort of eyeliner that only fallen women wear.
ProTip: If you're right-handed, do your left eye first, and vice-versa. It's easier to match your "good" eye to your "bad" eye.
5. If the morons are going to be especially moronic, use a bright color like purple or peacock green or gold for your eyeliner and keep the rest of the eye neutral.
6. Brush off (DO NOT WIPE OFF) the fallout from your eyeliner. Spray with some sort of setting spray, then apply the mascara most likely to do your coworkers mortal damage.
7. Sashay out the door.
For the uninitiated: Willam Belli. And Willam Belli, doing makeup and profanity in equal measure.
Makeup is an important tool in the nurse's super-nurse toolbelt. No kidding. Depending on the day you think you'll have, makeup can make the difference between going in fully-armored and going in like a freshly-hatched chick at a red-tailed hawk convention.
I live in Texas. Even though I work in the Only Liberal Enclave in Texas, I wear a full face of slap every. Damn. Day That I Work. It's armor, it's been weaponized, it's indispensable. It changes me from Jo, the civilian, to Jo, the Nurse.
First, put on some music. I recommend either the last scene of "Pitch Perfect," when the girls are kicking ass and taking names; or a medley of tunes from "West Side Story;" or maybe a whole bunch of Ingrid Michaelson, because she's the girlfriend who, while she might not wear false lashes herself, will never make you feel bad about wearing them. Skip Suzanne Vega and Brandi Carlile.
Second, get a good light. It's best if you put on makeup in a light that will make you look like a bitch-cutting drag queen in *that* light, but a perfectly-turned-out professional in the light at work. Somehow I have stumbled across this by accident, and I will never change.
Third, decide what message you want to get across. This can be broken down into categories. Observe:
a) Professional, polished, subtle.
b) One facial feature emphasized
c) Full-on cut-a-bitch, Texan high-hair, take-no-prisoners, advanced Jedi makeup
The trouble is here--and don't say I didn't give it to you straight--that the more subtle your makeup is, the more you have to make sure it's fucking perfect every time. If all you wear is a little concealer, some eyeshadow, and a coat of mascara, then you have to make sure that the concealer is matched to your skin tone, the eyeshadow isn't too matte or too shiny, and the mascara doesn't make you look all spiky without a comb-out. If you're going for the natural, no-makeup-makeup look, be prepared to spend some time on it. I don't do natural makeup primarily because it takes me three times as long as an aging-drag-queen look.
If you're going for what I wear, which is Raggedy Whore Who Needs A Drink, things are much easier. As Willam Belli (my guardian angel and inspiration) says, "Nobody gives a fuck if your eyeliner isn't even."
Now to apply makeup. I vacillate between b and c above; my usual look is natural skin, a nude lip, and eye makeup that can be seen from the ISS. We'll concentrate on eye makeup, because that is my jam. My lady jam. (That song really builds.)
1. Apply primer. The gold standard is Urban Decay's original formula. It's a lot like gessoing your eyelids, but trust me. This shizznit will keep your colors pure and your makeup from running. Put some under your lower lash line with a cotton swab.
2. Apply a base powder. You can use a neutral, skin-toned powder for this, or a very lightly-tinted eyeshadow. Smear that bastard all over your eyelid. Be generous; it'll help you blend stuff later.
3. Slap on your shadow. The usual rule is darkest in the crease and on the outside third of the eyelid, medium on the middle third of the eyelid and up above it a bit, and a pop of lightest eyeshadow on the inner third. You can disobey that usual rule however you like. Whatever you do, blend it like Beckham.
3a. If you're feeling really badass, put some tape at a 45-degree angle from the outer corner of your eye to the outside tip of your eyebrow. I use paper medical tape, but you can get away with Scotch tape if you take some of the sticky off. This will give you a mathematically precise wing with incredibly crisp edges.
4. Eyeliner. If you're feeling merciful, use a pencil, smudge it, and then run over the smudge with the same color eyeshadow. If you're not inclined to take shit, use a liquid, but don't extend it past the outer corner of the eye. If you're me, and you have to deal with exhausting morons on the daily, do Battle Wings.
4a. Battle Wings: Using your favorite powdered eyeshadow that's been liquefied with water or a setting spray, or your favorite liquid, sketch a line along your top lid, making sure it's so close to your lashes that you can't tell where they start and the line ends.
Then, following the angle of your lower lid as it goes up toward the outer corner of your eye, sketch a short line.
Meet that line from about 2/3rds of your upper lid on out. Do not be afraid if this looks like too much. It might look like too much in the mirror, but in real life, it will warn residents and family members that you will cut a bitch, because your eyeliner is the sort of eyeliner that only fallen women wear.
ProTip: If you're right-handed, do your left eye first, and vice-versa. It's easier to match your "good" eye to your "bad" eye.
5. If the morons are going to be especially moronic, use a bright color like purple or peacock green or gold for your eyeliner and keep the rest of the eye neutral.
6. Brush off (DO NOT WIPE OFF) the fallout from your eyeliner. Spray with some sort of setting spray, then apply the mascara most likely to do your coworkers mortal damage.
7. Sashay out the door.
For the uninitiated: Willam Belli. And Willam Belli, doing makeup and profanity in equal measure.
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