A couple days ago I fell sick. I’ve been feeling well for a good stretch, so this was a drag on a number of levels. Living alone, such spells — when not hospital-bad — come and go and I do what I do to get well and that’s basically that. But my German friend is visiting and I am therefore not just sick but being observed being sick and I’ve been considering how this alters the sick one’s experience. I want to work in that quantum-physics phenomenon about how the behavior of something will change when being observed, but all I could find were five different names for it and something about a cat, so I’d better leave it alone.
There are three problems with having someone around when you’re ill. The first problem is that you need help but you also feel like going into a dark corner and snarling when anyone gets close, wounded animal-style. This is a conflict. The second problem is the mirror problem. When a little kid turfs out on her tricycle, it’s not the skinned knee that makes her wail; it’s the look on her parents’ faces. They panic or look really concerned and bam: the fall is now a Huge Deal, cue sobs. Being sick and observed is a little like that. Yes, my guts are mutinying; yes, I’m walking around like a ninety-year-old. But if I were alone, I’d probably just feel crappy, frustrated, and seventy-years-old. The look on my friend’s face when I shudder and sink into my easy chair makes my state way worse.
The third problem is the fixer-upper problem. Like any caring person, my friend wants very much to fix me, to fix the situation; I’ve dealt with this kind of beautiful, valued concern for years and you mustn’t think I resent it. But idea after idea (e.g., “What if you ate more yogurt?”), suggestion after suggestion (e.g., “You need to sleep eight hours; no less”), and indeed remonstration after remonstration, (e.g., “You put so much pressure on yourself, Mary” and “You travel too much,” etc.) serves to make a person feel guilty and that her behavior is the problem. If only I could find the perfect food formula, if only I would change one thing about my lifestyle, if only I would be someone else, then I would be okay — and be okay forever. Talk about pressure.
Should I live alone forever? Am I less ill if I am alone? Is any person with chronic illness or even a bad cold less ill when in solitude? This is a worthy question to consider and I’m sure I’m not the first to consider it.
It’s also true that I do not notice the gallons of tea I drink every day until someone points it out.
If the first trip to the ER in Atlanta was harrowing and depressing, the second trip restored my faith in humanity. Oh, it was still harrowing and there was plenty to be depressed about, but I had a friend with me on the second trip and that made all the difference. (First half of this two-part post here; more on how I got here in the first place, here. )
So there it was, Saturday morning. I’m in my hotel room, and nothing good is going to happen. After agonizing deliberation (because I didn’t want to make a fuss, be dramatic, or admit defeat) I called my friend and colleague, Marlene.
A word about Marlene.
You know the feeling you get at Thanksgiving dinner when all the casserole dishes have been put out and your mom has finally taken off her apron and is sitting down for Pete’s sake; when everyone has wine and rolls, and the turkey’s out and the gravy pitcher is already making the rounds; that moment when everyone raises their glasses to toast and the kids are toasting with juice or milk and you’re just overwhelmed with love and gratitude because people are generally good and the world is spinning at the correct speed for once? That feeling? That is Marlene. She is the embodiment of the Thanksgiving toast. She is everything that is good.
She’s also a successful businesswoman at the helm of a national network of convention center-sized quilt shows — including Quilting LIVE!, the show that had taken me to Atlanta. Tools Marlene carries at any given time might include: a laptop, bluetooth headset, box cutter, first-aid kit, talent contracts, cash box, dinner reservations and a little gift she got you, just because. As you can see, Marlene is a good person to call when you’re slightly dying.
Marlene arrived in lightning speed and helped me down to the car. Her husband was waiting right outside. (Don’t get me started on Stan; if Marlene is the Thanksgiving toast, Stan is like, birthday cake the day before your birthday.)
Here are excerpts from conversations that morning at the hospital. These are pretty much verbatim and all illustrate the need for an advocate at the hospital — preferably Marlene:
Conversation No. 1
NURSE: (to me) What do you do, hon?
ME: (weakly) I’m a…quilter. Writer.
MARLENE: This young lady is a national television star. She’s a magazine editor, an author, and an expert quilter here for the quilt show in town this weekend. She’s a dear part of our team and we care about her very much. We’d like to see the doctor. Now.
NURSE: Uh, yes, right away!
Conversation No. 2
ME: (feebly, to NURSE.) Please… The pain medicine. Please, when you —
MARLENE: (to NURSE.) I’ve asked you three times for lidocaine and pain medicine. If I have to ask again, I will not be very nice. Thank you, we appreciate it.
Conversation No. 3 NURSE: Okay, here’s that pain medicine. This should help.
ME: Oh, thank you. Thank you.
MARLENE: Now we’re getting somewhere. (to ME.) I’ll go down and get the prescriptions, hon, you just sit back and let that take effect. That’s the good stuff.
The help with the nurses, the coordination to help cover my show duties that morning, and of course the ride to the hospital — all that was beautiful. But perhaps the best thing Marlene did for me was when I lay on the bed in the exam room, twitching and gnashing my teeth. She stood above me and smoothed my hair, stroked it softly as we waited for the doctor. That simple, compassionate action did more for me than the Dilaudid, I swear.
“I miss my cat!” she laughed. “You’re my cat right now, Mar.” And she made me laugh, and I felt better. And then, ever thinking, my advocate said, “Does this bother you? Do you want me to stop?”
Our New York City days have been so good. When he comes in the door in the evening, I leap up and run to him. I always like to look pretty when he arrives. Dinner will be almost ready or I’ll have been baking cinnamon rolls, his new favorite treat. He calls them “cinni-minis.” I jotted down the recipe and taped it to the cabinet above the stove and it says, “Yuri’s Cinni-Mini’s” and there are hearts and frosting smears all over the paper.
We have a mouse in the apartment. Naturally, we named him Mickey. Neither of us are really okay with Mickey being there but neither one of us wants to buy a trap. Maybe if Mickey started paying rent we could get comfortable with him running past on the parquet floor every once in awhile, at night, when I’m reading and Yuri is finishing up work for the day.
All this rigmarole. The fears. Atlanta. Taping the TV show. New medicine that has freaking nitroglycerine in it. I made an appointment with my surgeon in Chicago because she has operated on me a lot. New York is full of smart doctors but I think it’s wise at this juncture to speak to the lady who has had her hands in my abdomen on three separate occasions.
The worst case scenario is that I was misdiagnosed in 2008 and I actually have Crohn’s disease. (That would mean an already colon-less me would begin small-intestine re-sectionings.) The best case scenario is that I am how I am now, which appears problematic.
Last night, I let my mom’s dog Scrabble sleep with me in the bed. I’m mostly against animals in my bed (unless you take me to dinner first — hey-o!) but Scrabble is squeaky clean and very soft, with short, white curly fur. She looks and feels like a lamb. Scrabble is a miniature Golden Doodle and she can shake, roll over, and fetch three different toys by name, but she still jumps up on people when she sees them because she is so excited to have friends.
When she was a puppy, I would lay her on her back and give her a puppy massage. She was very hyperactive, being a happy puppy, but I would flip her on her back and use my fingers to do a puppy version of a deep tissue massage and she would just totally conk out. She loved it. It got so I would say, “Scrabble? You wan’na puppy massage?” and she would get this look like, “Is this seriously going to happen right now?” And I’d massage her little chicken wings and that’s how I fell in love with her, down on the floor of the living room, smiling at her happy puppy face, burying my face in her fur.
When I went to the ER on Thursday, I went by myself. When I went to the ER on Saturday, I had an advocate. The difference between the two visits was stark. I’ve been to an emergency room alone before and I’ve gone in plenty of times with a friend or family member, too, but never in such short succession. Comparing the trips closely showed me plainly how one has to do these things:
You must have an advocate at the hospital.
If you are a solo person considering driving yourself to an ER tonight (or any night in the future), I urge you to call someone to go with you; at the very least, ask someone to meet you there. Of course, if your arm is hanging off or you’ve got visibly spreading flesh-eating bacteria working its way across your chest, you will probably get through the door with a minimum of hassle. I’m talking to the people out there who struggle with internal problems (e.g., possible appendicitis, possible internal flesh-eating bacteria, fissures, Crohn’s, etc.) because without someone to vouch for you, you are light years away from the care you assume you’ll get in a room created for the express purpose of dealing with people in emergency health situations.
Note: If you’re a person who doesn’t have a soul on earth to call, my advice would be to get to the ER tonight however you have to, get the hell out, and set about making some friends first thing tomorrow morning. Book clubs are good, online dating works well, and if you’re a quilter, run to your nearest guild and join the next sew-a-long. Any of these strategies will yield people clamoring to take you to the hospital before you know it.
On both trips, I was in identical straits. Pure agony. Any human being who took one look at me (and how could you miss me, howling like that) could see that this was a woman in trouble. Was I foaming at the mouth? Well, no. But I was flagging. And while I understand totally the need for proper identification and at least a cursory examination of a person before IVs and medications are flung around hither and thither, Thursday’s experience reminded me that the collective brain of the ER has been removed and a skeptical, bureaucratic, Policy And Procedures Manual has been wedged in its place. This is not news, I realize, but my shock and indignation is fresh, so it feels like news.
Additional Note: I’m sure there are at least a handful of folks reading who are now or have been professionals in the medical field. I owe my life to a number of you, first of all, and don’t think I don’t know it. I see the problem(s) I’m talking about having less to do with individuals and more with the medical industrial complex. Indeed, it is the lack of individuality and specificity in the system that does damage.
The nurse was working the night shift. I get it. That sucks. And we all have bad days. But she began from a place of inhumanity. She came past my curtain and asked quite casually, “What seems to be the problem today?” (I’m writhing on the bed at this point.) She almost snorted when I told her I needed a certain kind of pain medicine — I’m allergic to morphine — and when I refused a CT scan I felt a freshet of loathing from Little Miss Ratchett. I know roughly when a CT scan of my abdomen is needed and when it is not; it would’ve been useless to do one at that time, given my symptoms and my traveler status, most especially because my pain had yet to be treated. (It appears that hospitals do far more CT scans than they need to**, primarily because they can bill for them. To be fair, this over-scanning has something to do with protection from litigious customers, but I felt my hospital was being either lazy or thick with their order. Not that I said so at the time.)
Halfway through my time there, as I’m trying to explain my entire medical history again, somehow, and get what I need to feel better, I realized how silly it was to be there alone. It was my fault. My stoicism was ill-conceived. The nurse might’ve been a jerk, but I looked up some stats and it appears that fiending drug addicts make frequent trips to emergency rooms all the time, looking for a fix. Here I was, a woman by herself, from out of state, with no visible injuries, crazy eyes, and an increasingly petulant attitude (see: refusing CT scan), begging for pain medicine. If a junkie could pull off looking/sounding like me that night, that junkie would be pretty amazing. But I hear they’ll do anything, so maybe the nurse was right to be so totally unhelpful. I tried to get in touch with someone from the quilt show to speak with the hospital, but when I couldn’t make contact and feared waking up the whole team, I gave up. Not being able to call for backup did not help my case.
I left with the bare minimum of relief and went away, 10% better in one regard, 30% worse in others.
Tomorrow, the second visit, and the wonder of compassion, advocacy, and my friend Marlene.
**Between2000 and 2010, the National Center for Health Statistics showed the use of advanced imaging scans— CT or MRI—increased to 17% from 5% of all emergency-room visits. A Push For Less Testing in Wall Street Journal, Feb. 23, 2014.
Always travel with a large scarf. This is a rule for all the ladies. Men should heed the scarf rule, too, but they may understandably beg off for fear of appearing too European.
You will find that a large scarf serves many purposes on a journey. I have used my oversized, linen/viscose, blue-and-white polka-dot Marc Jacobs scarf (variation pictured above) in the following ways since leaving for Atlanta. My scarf has been…
an artsy-fartsy fashion accessory
a warm shawl
a bunched up pillow in the backseat of a car
a filter at my nose/mouth because someone in front of me was being fartsy on the plane (no artsy, just fartsy)
a napkin (just the corner)
a blanket on my lap while in various wheelchairs yesterday and today
a comfort (see: familiarity, things that are soft)
After my interview with Nellie Bly, I foolishly thought I might get another good night’s sleep and be ready to tackle Day 3 of the Atlanta trip without incident. The Agony had other plans for me, however. Around 1am, it wrapped a ragged, bloody fist around my abdomen and associated parts and every half hour, on the hour, I was in the bathroom, basically disintegrating at an alarming pace. It was 2:30am, it was 3:17am. It was 4:02am, it was 5:01am. I was afraid my pitiful wails were going to start waking the people in rooms nearby. I made deals with my body: “You stop doing this and we’ll go to the zoo, baby,” and “You cool it, we’ll go to Atlantic City.” I took five sitz baths. I used my entire arsenal of medicine — twice. No relief. It was 5:48am, it was 6:23am.
My class was to begin at 8:30am. I would take a step and stop, locked in position, my face in some crazy kabuki mask of pain or death. Just when I got my face right I’d have to go to the bathroom again and the battery acid/toxic waste mix would run through me and I would squall like a newborn baby. I managed a shower, noting my knuckles (white.) It was 7:02am, it was 7:26am. The tasks before me included: putting on my makeup and packing the case, zipping my luggage, making it to the elevator with a box of my books, my suitcase, my briefcase, and my class materials. Also, I had to stop crying. I sat, gathering my strength to do these things. I sat for so long, I realized they were impossible. I called for help.
And so it was that I went to an Atlanta ER again, though the second time it was to a different, better-run hospital and I did not drive myself but had more than one friend with me to assist me at the gates. It made all the difference in the world. I got medicine that helped me avoid pain-induced cardiac arrest (it’s funny, really) and plans were rearranged so that I would stay another night in Georgia, not go home to NYC, and come straight to Iowa a day early.
I’m telling you, that scarf was a lifesaver. It covered me in the hospitals. I wadded it up and bit on it before the pain meds kicked in. I dried my eyes with it. In the wheelchair in Atlanta, the one in Chicago, and the one in Des Moines, it was my little lap blanky — you know, like your Nana puts over her legs when she plays bridge? That was me. I was your Nana. I was probably paler and slightly more demoralized than your Nana, but I’d better not go around making assumptions about Nana. Nana’s a pistol.
Take a scarf. You never know.
**Note: The Fons & Porter company is great for many reasons. They were nothing short of heroic these past couple days. You too, Katy. Thank you.