Allie Griffith

Allie Griffith
Location
Memphis, Tennessee,
Bio
Writer, game developer, artist. Also raconteuse, dilettante, and passionate advocate. I've been called an angel of wisdom and I've been called a judgmental idiot. Sooner or later I'm bound to say something that you disagree with; feel free to tell me your side of the story. I listen to other people's opinions and have occasionally been known to concede that they might have a point and alter mine. I use too many semicolons and I have terrible taste in music. I'm the sort of person who thinks it's more telling to mention that than that I'm married and had a foster daughter but she's grown now. By objective standards, my life is probably a disaster - no health insurance and a chronic illness - but my happiness quotient is the highest of anyone I know. Sometimes I tell sad stories but please don't let them make you sad.

Allie Griffith's Links

Salon.com
FEBRUARY 8, 2009 4:25PM

Someone's always got it worse

Rate: 17 Flag

I was reminded of this incident by a discussion on Bill E's thread about how life isn't fair.

 

As you know by now if you've been following my posts, I have lupus-like syndrome, which means I have an autoimmune disease with symptoms similar to lupus but no one's sure exactly why. My illness isn't usually life-threatening but it isn't properly controlled, either - since I'm self-employed with no health insurance, I was flat out told by the local specialist's office not to bother coming in. The tests I would need to track down exactly what's wrong with me would cost more than I can afford, and there's no guarantee they would ever figure it out. Auto-immune diseases are tricky business and no two patients are alike. A friend of my father's had a daughter who went through all the tests and all the treatments, including a bone marrow transplant, and finally died. Her diagnosis?  "We've never seen anything quite like this before, so we'd like to name this syndrome after your daughter."

In the meantime, my doctors are guessing, and for the most part, that means I struggle along with medication that doesn't work trying to encourage my body to behave itself. I try to get plenty of rest and not do things that I know trigger flare-ups, and sometimes that works, for months and years at a time, and I live the life of a normal person. Sometimes it doesn't work. The transformation from normal to sick can be astonishingly sudden. One summer morning just before dawn my husband and I went for a long, beautiful walk. We had literally stopped to smell the roses in front of a neighbor's house when it started to rain. Then it pelted down rain, sharp and stinging. The neighbor, who is an elderly man who likes to come out and talk about his roses, offered us an umbrella, but we laughed it off. We were soaked already. We ran home, almost two miles in the pelting rain. My tennis shoes were squidgy when we reached our front door, still laughing.

My body's retribution was swift. That day was the last time I would be able to run anywhere for over a year. The next morning, my head pounded, my extremities were covered with peticulae - broken blood vessels that look like little blood blisters under the skin - and I was suffering from what clinicians call "irritability." Have you ever read irritability on the list of symptoms for an illness and wondered to yourself, how would you tell?  How do you know if you're officially irritable or just plain pissed off as usual?  Well, I've been there, so I'll tell you. Clinical irritability is when your husband says, "Okay, do you need me to bring the car around?" and the sound of his voice makes you want to slap his nose off. It's when listening to daytime court tv makes you want to flip out like a ninja and kill everyone in a 40 foot radius. For some reason probably connected to inflammation of my central nervous system, when I have this type of flare, for about the first 24 hours the effort of decoding the human voice triggers intense rage. I can control it. In fact, I'm told that during these flares I'm excessively sweet and polite. That's because I'm praying for you to shut the hell up and die already, and it takes all my mental energy, leaving just enough for my manners, which are automated by long repetition. 

The other thing that happens during these flares is that my circulatory system tries to destroy itself. My blood produces antibodies which attack the walls of my blood vessels and heart like a billion tiny little miners with hammers.  And that, my friends, is not compatible with running two miles in the rain. It's not compatible with running anywhere, or even walking, for that matter.

Usually my flares last a couple of months. The flare I triggered by carelessly running two miles in the rain on a summer morning lasted  the rest of the summer, then into autumn, then into winter. On New Year's Eve it was still going strong.

I hadn't been to the grocery in almost a month, because standing and walking were so much effort. My husband picked up some of the slack, but if you have a husband I suspect you know that sending the husband to the grocery is not the same as going yourself. My husband is a wonderful person, but he cannot be taught how to select a ripe eggplant. More to the point, he can't be taught to look at the eggplants, say, "None of those look very good right now," and buy an acorn squash instead, along with all the ingredients needed for making an acorn squash into dinner. That's okay - telepathy is too much to ask of anyone. But it's also very frustrating.

On that New Year's Eve, after my husband got off work at 10 pm, I willed myself to get dressed and head to the store. Our objective was black-eyed peas. According to Southern tradition, the number of black-eyed peas you eat on New Year's Day predicts the number of good days you will have in the coming year. I figured I needed all the help I could get. 

The only problem was, everyone else in Memphis knows this tradition too. On the other hand, Hyde Park, which at this era had bought up all the local grocery stores, is based in Chicago. If you wanted some of the tiny supply of peas, you needed to buy them early. And here it was, an hour before midnight on New Year's Eve.

We went to Kroger's. Sold out. We went to Seesel's. Sold out. We went to Piggly Wiggly, which was in the process of closing early for New Year's, and they kindly let us in but they were sold out too. K-mart super center had also closed early.  The only place left was the Wal-mart super center.

By this time my heart was pounding as if I'd run a marathon. My husband asked a stock boy where the produce was, and he pointed to the back of the store. I wanted to collapse. "I can't walk all that way," I said. "You go and look."

I propped myself against a column near the front of the store and waited. With no one to see me, I started to cry. What kind of life was it if I couldn't even walk to get my own groceries? Why did such a simple thing as buying peas have to be so hard?  I try not to be superstitious, but at that moment it seemed like the universe was trying to tell me there would be no good days for me in the next year, no more good days, ever. 

My husband was taking forever. My attention wandered. Two small children were slinking through the clothing racks, ducking and giggling and pointing at something. I followed the direction of their gaze and saw an older man perusing magazines. He had his back to me. There was something odd about the way he turned the pages.

The children snuck up on the man, in little starts and darts, as if they'd dared each other too. By the time their mother returned with her cart, they had ventured across the open space, within ten feet of their target.

"Stop that," she hissed, scandalized, and the man turned around. Now I saw why his page-flipping had seemed odd. He had no lower arms, only two metal pinchers. 

His smile was instantaneous, huge and generous. "Oh, it's okay, they're only curious," he said. "You two come over here and have a good look!"

The children came, at first a little nervous, but quickly warming to the armless man, who explained that he had once been a worker for Memphis Light Gas and Water. He had mistakenly touched a power line which was supposed to have been turned off, and it had burned his arms. The doctors had tried to save them, but in the end they had to be taken off. His bionics were experimental and he had participated in the design process himself. He finished by telling the boys to be careful around electricity, and they nodded, eyes wide, their mother smiling and telling them to thank the man for telling his story. They gave him a big hug and ran to the checkout aisle, giggling.

It would be inaccurate to say that I had forgotten my own problems, but my self-pity seemed trivial now. Here was I, whining about some peas and a heart inflammation which I knew from experience would pass in time, and there was this guy, with no arms, facing every day with a smile. No, more than that:  making other people smile too. The universe had bitch-slapped me with a perspective check and my tantrum was over.

My husband came back, brandishing four cans of Trappey's black-eyed peas in triumph. He was followed by a small mob of equally triumphant last minute pea-purchasers. "They were in the back!" he said. "I made a guy go and get them!"

There are appromixately ten peas per lady-like spoonful of Southern black-eyed peas. If you eat 37 spoonfuls, you are guaranteed maximum value for the coming year.  The peas are not magic;  they will not cure lupus-like syndrome, for example. But even chronic illness is easier to face if you have the right attitude.

 

It's not New Year's, but Southern-style black-eyed peas are good any time. Now, these are not diet food - they are soul food, which means that the flavor comes mostly from fat. Cut the fat if you must, but be aware that the fat is really the whole point.

Start with 2 cans of peas (Trappey's is best) in a large, thick-bottomed saucepan. Don't drain them. You can use fresh peas but you will have to cook them forever before you start. This is a recipe where canned works best.

Per 2 cans, add 1 teaspoon minced garlic, 1 sliced large yellow onion, 1 sliced Granny Smith apple.  You want a tart, hard little apple. Plus half a pound of whatever fatty pork product happens to be on sale - bacon works, but so does pork belly or anything else that's mostly fat. You want to look in that part of the meat section where the poor  people shop. Alternatively, the last of the Christmas ham is perfect - smoked or honey-baked meat adds character. Salt, pepper, and tabasco (or diced jalapenos) to suit yourself. Add a little cider vinegar for a sharper taste or a little apple juice for a sweeter taste. Simmer at least an hour. It's done when the peas lose their individual identity and the pot liquor is thick and creamy. Serve with cornbread. A spinach-based green salad will help keep you from feeling like you've lost your tiny little mind to be eating quite this much pork fat in one sitting. Enjoy.

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Comments

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I know this is tangential, but hey, that's me...

you said "if you have a husband I suspect you know that sending the husband to the grocery is not the same as going yourself"

I WAS the husband. I did most of the shopping because sending my wife to the grocery store wasn't the same as going myself...
Brian, my husband read this and said, "I can too pick out an eggplant!" So we're going to see. Maybe next Tuesday we will post a recipe for eggplant caviar.

Anyway, apologies to any husbands who do the grocery shopping. It's not a matter of sex, it's a matter of division of labor... the one who's always done it knows how to do it.
A deep and long-abiding respect I have for the universe--which always manages to show us at justtherighttime how grateful we should be for everything we have.

Thank you for this post, Allie. It was timely indeed :)
Great post. I'll have to try the recipe.

I make black-eyed peas from dry in the crockpot all the time. I have a bunch already cooked in the freezer--they were already seasoned (though not with meat, as the boyfriend was one of THOSE vegetarians), but I'll go to experimenting...
Beautifully done. You have so brilliantly described your condition. and with gratitude, no less. You should be a guest speaker at the nearest medical school.
Wonderful story and so well told. Sad about the running in the rain turning into such a big deal. My son has spina bifida and I tell him when he starts to feel down that everyone has something, you just can't see it necessarily, and it's so true. I hope you get some health care real soon.

I've made that recipe only with pinto beans, and it is great with cornbread. Hope you have lots of good luck in 2008.
Hope you have lots of good luck in 2009.
What a wonderful post. I have a feeling it's going to be the kind of post that stay with me a long while. (Those are always my favorite kind!)

How are you doing now?
Wow, Allie. That's a terrific story. We all need to be "bitch-slapped by the Universe" every now and then but not everyone appreciates the lesson like you have.

Thanks for the recipe, too. It sounds wonderful!
Newsie763 - thank you kindly! I definitely believe in serendipity.
Leeandra, I've never tried it in a crockpot! I see no reason it couldn't work, except that I'm not that patient!
SeattleK8, there's an idea. Think they'd pay me in medical care?
Latethink, my mom is blind in one eye. It's not noticeable most of the time but when she's tired or something sometimes her eye doesn't track properly. We have a friend who has a child with cerebral palsy, and he noticed her eye one day and said, "I guess everyone's handicapped, just with some people you don't notice right away." And I think that's true - if it's not a physical handicap, it's bound to be something.
Marple Fank, right now I'm not doing too badly, except that I'm terribly out of shape and my heart is starting to get permanent damage due to scarring. Actually as I say this I have a thermometer in my mouth because my temp is spiking - probably immune related somehow, it's a rare day when I don't have a fever - but hopefully not serious.
Lisa, thanks. I've definitely been bitch-slapped by the universe more than once! Eventually it's bound to get through even my thick head.
Great story. Hope your health is better this year. Thanks for the recipe, too.
Stories like this make me get really agitated. Don't bother coming in because you can't afford it? What complete bullshit our health care system is. There is a health group for the chronically ill at The Daily Kos . Give me a day and I will e-mail the information to you. Peace.
You go, Idahospud! I'm glad you know of something concrete to do. It is shameful that a doctor would tell that to a patient even though I know they have expenses. It seems to me if IS knows of a compassionate care program, so would the doctor, and that you're certainly not the only one in your town without health insurance that someone would make it their business to find a place people could go. It really is outrageous.
I love black-eyed peas, especially if served with cabbage.

I'm sorry you have this stupid illness. Here's to many years without flare-ups or problems ever again. Here's to the right medication. Here's to hope.
Scruffus, thanks!

Spud, locally Memphis has what's called the Church health program, which is a volunteer group of doctors. Unfortunately none is a rheumatologist, and I don't meet the qualifications for the program since I'm self-employed. Their program requires you to work at least 20 hours a week for someone else. It's been suggested that I put myself on my own payroll, but I don't work 20 hours a way consistently in any case... freelancers don't operate like that. I might spend six months trying to land a contract, then work like crazy for six weeks. The way the program is set up is very annoying!
Latethink, yeah, I was a little stunned. What happened actually was that I was referred (which you have to be) to this doctor, made an appointment - he's backed up like a month in advance. Then three days before the actual appointment his office contacts me to get my insurance information and make sure all their costs are covered. I say I have no insurance, and they tell me they will need to be paid in advance, to the tune of multiple thousands of dollars. I ask if we can make arrangements of some kind - nope, they don't do that.

Odette, thanks. What I was worried about being a flare yesterday seems to have been the onset of food poisoning... I feel another post coming on, "Why I hate my grocery store!"
A great, great story on several levels. And thank god you didn't title it "Black-eyed Peas Recipe" because I would have missed it for sure - and I'm the weekly grocery runner here. Hang in there.
Rated
Thanks so much for this excellent post. I, too, struggle with autoimmune disorder. I've found that prednisone can be a godsend, and is available in generic, which is dirt cheap at your local CVS/Walgreens/Target/Walmart. It's just about getting a sympathetic doc or NP to call in the Rx.

I hate having a supersensitivity to the world at large (especially during flares), too. I find riding in cars with the windows down to be painful. It's taken me years to assemble a group of friends who don't think I'm nuts. Bless your husband and his inability to pick out vegetables.
Thanks for stopping by, Gwen!

Grif, I figured I might as well toss in the recipe for all the Yankees reading OS. But the point I hoped to make is that happiness comes from inside, not outside.

Lipshitz Condition, I've found that my side effects from prednisone are worse than the affliction. Plus, it doesn't really seem to help. So far I've tried a lot of fancy anti inflammatory drugs (some doctors are kind enough to give me samples of the latest thing) and steroids, but what seems to help me most is plain old aspirin. I know what you mean about the windows, seems like air blowing on your face is really painful during a flare.
I'm going to have to go back to read more about your condition, but your description of what you went through after that run through the rain was harrowing!!! Wonderful way to end it with the recipe and the lesson of the magazine man.
Have you considered contacting the NIH Undiagnosed Disease Program? Might be worth a shot.

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31