I Wouldn’t Miss a Minute of This

It was a rainy Sunday morning. Our nearly two-year-old daughter, Lyra, woke up singing, which always makes Glenn and I laugh no matter how groggy we are. We got her up, and I made oatmeal. After breakfast I gave my extremely silly kid a long bath while Glenn vacuumed the house. We decided Glenn would take Lyra to the Museum of Science while I had a little alone time. He went upstairs and took a shower.

We have an open format house, but the rooms are on different levels so I could hear that he’d been out of the shower for awhile but I hadn't heard him making any noises like he was coming down and I was itching for as much free time as our pre-lunch time hours would allow, so I shouted up "You coming down?"

“Can you come up here?” he said kind of weakly.
“Are you okay?” I shouted up, not particularly concerned.
“I need your presence,” he said awkwardly. I safety-gated Lyra into the living room and jogged upstairs, imagining he was examining a weird mole or something of that nature.

I went up and he was rocking on the bed, naked. He seemed extremely agitated and mournfully kept saying he was really disoriented. I kept trying to get him to tell me what he meant by disoriented. I assumed he was having a panic attack. I’ve had a few of these and realize how huge of an event they are. I asked if he had fallen in the shower, and he didn’t think so. He kept saying he didn't know what day it was or the date. I told him it was Sunday and that it was okay to not know the date. I got him to deep breath with me slowly to calm down. I made him laugh. I asked him questions he answered rationally, including his name and mine. I made him track my fingers with his eyes. I made sure his whole body was functional. Then he just kept repeating the questions about the day and date.

I still thought maybe he was just panicky. Nothing really seemed wrong except his reaction. I asked him a couple of more questions and he did not know what year it was or who the president was. I still felt disbelief, since he could talk so normally about other things. Was he trying to make sure I understood how seriously he was freaking out? No, he really didn’t seem to know. I handed him each item of clothing as he put it on, occasionally prodding him to do it. He was steady on his feet and able to come downstairs. He definitely needed me along, and I hoped this wasn’t an ambulance situation and I was making the right choice driving – it was just so confusing. I got Lyra into her coat and shoes. I asked Glenn if he was able to bring the stroller outside to the car.

“Yeah,” he said sounding relieved, “I can do that.” I threw some snacks and milk and children’s books in a shopping bag and realized he was still just standing in front of the stroller. I watched him carefully and asked again. He brought it outside and opened the trunk of the car and found that our jogging stroller was already there taking up the space.

“Okay,” he said, “I’m honestly completely confused by this.” I marshaled him into the passenger seat, shoved the stroller in back, strapped in Lyra, and drove us just a mile over the Charles River to Mass General.

The car was completely out of gas. The light had come on while we were on the highway returning from a dinner with friends the night before. I crossed my fingers and pulled up in the passenger drop-off zone and left the car there along with everything I’d brought along. There are normally orange-vested people there to help with parking and emergencies, but there was no one around. Sundays are more difficult. I had no idea how much I should be hurrying, so I hurried. I was hauling Lyra in one arm and propelling Glenn along with the other arm into the ER.

“My husband is disoriented, and is repeating questions about the date, doesn’t know what year it is,” I blurted. They whisked him into acute care immediately. They took blood, hooked him to monitors and asked him a lot of questions. They made him track a finger, use his whole body, show his coordination, and got him in line for a CAT scan pronto. I was getting scared and trying to act cheerful with Lyra and Glenn but started fixating on the iodine? blood? stains on the floor.

A registration administrator came back to finish his intake. She asked if he still worked at his old job that was listed with his information. “Yes,” he said. “No,” I corrected. I married the smartest person I knew, and I considered what marriage with someone with brain damage might be like. He kept repeating his whole name, my whole name, and Lyra’s, proving to himself he wasn’t forgetting everything. He told me a number of times “I know that I love you.” He moved around and some gauze fell out of the bed and I suddenly totally snapped at the registration woman who’d come back to fill in his information. “Are those from HIM?” She said I could ask a nurse.

I started making phone calls.

The second they had him occupied with things I hauled Lyra back out of the ER, worried about the car. I desperately needed the stroller for my squirmy, heavy kid, and didn’t need the car towed. I asked the information desk if someone could help me park it. They said someone was outside, but no one was. I didn’t want to be gone from Glenn for long.

I strapped Lyra back in and realized how scared I was while I circled around and around the parking garage. I was completely freaking out that I couldn’t find a space. The gas alarm beeped at me and there were still no spaces. At last we were in the very last space on the roof and the car hadn’t died. I ran with Lyra in the stroller in the rain to the elevator, and back into the hospital and ER.

Lyra was struggling being in the stroller. Glenn got into this endless loop of asking me the exact same questions over and over about how he got there and what was going on and had he had a stroke. “I don’t think so,” I said. “I don’t know.” “Jesus,” he said every time, “This is pretty freaky. Okay, I think this is the most scared I’ve ever been.” I gave Lyra snacks, and made her laugh, and just kept answering him.

Finally I got through to my friend Jade, who was able to come right over and she played with Lyra out in the waiting room and hallway. She also called her father who heads up a child psych research department at MGH for help understanding what was happening. Stroke didn’t seem likely – he’s not much of a candidate for one and was speaking normally and using both sides of his body fine, virus I thought would probably have had a temperature with it, and brain tumor was the other obvious candidate. I disassociated a little then.

They took Glenn for a CAT scan, and Jade and Lyra and I went to the cafeteria where Lyra explored all the benches and chairs while we picked at fruit and grilled cheese. Then I got through to Christie, a mom friend of mine I met in a new parent group when our kids were born. Lyra, like me, adores Christie and her daughter, and we take in each other’s kids frequently, and frankly, look forward to it.

I explained to Lyra that Daddy was going to talk to the doctor for a while and they were going to take some pictures of his insides to make sure he didn’t eat a puzzle piece (there were definitely some missing from this situation, but this is a reference to Curious George Goes to the Hospital). She nodded and was fine with that explanation. Christie came and picked up Lyra. Lyra was completely delighted with this and Christie took her to my house and fed her and put her down for a nap. Jade stayed with me.

They brought Glenn back, and he had no idea he'd just had a CAT scan. He didn’t remember it at all. He could talk about all kinds of other things normally here and there but then would ask the same set of about seven questions about how he got there, why was he there, what happened, were there any theories. "I had a CAT scan and I don't remember it? Jesus. That’s freaky. Okay, I think this is the most scared I’ve ever been." Each round he realized completely anew that he was scared. Each round he reacted the same way.

Eventually after maybe twenty rounds of Jade and I taking turns answering, I wrote him answers on an index card, which helped everyone and greatly calmed him down. He clutched it for hours and hours. Whenever we had any results of things that had been ruled out, I added it to the card for him. Jade's father spoke to me on the phone about the possibilities of a tiny reversible stroke caused by a brief lack of oxygen flow.

Glenn read his card, and then said “Have I asked you these questions a lot,” for the fourth time. I took the card and added “And yes, you’ve asked these questions a lot.” The next time he read the card he asked me, “Have I asked you if I asked these questions a lot, a lot?”

Glenn was occasionally totally normal seeming. He’d go to talk and I’d chant to myself “Be Here Now” like it would help him not slip away like his memory. I thanked my stars that Jade was with me and Lyra was better than safe, she was excited to be with Christie.

The CAT scan was normal. No tumors, stroke signs, infection signs. A psych consult was called and Jade and I stood outside the curtain while the man talked to him and asked questions with puzzles and memory tests. Glenn could subtract series of numbers faster than I probably would with a calculator but did not know I'd been standing there five minutes before. He couldn't keep three words in his head when asked again after a couple of minutes.

The neurologist talked to him and did similar tests. Glenn was aware he wasn’t thinking right and was fighting it. He kept trying to deduce whatever he could – found a cleaning schedule on the wall with most days checked off and guessed what day it was based on that. Sometimes it wasn’t so hard: the doctor asked him where he was and he said “MGH.” When asked what that stood for, Glenn said “Well, Massachusetts General Hospital is written on your shirt, you should probably give me a harder one.” He was given drinks for having low potassium. He didn't remember drinking it later but guessed he must have since he saw the cup. A neurologist came in and asked him similar questions. Glenn saw a jug of urine and told the doctor -- "I don't remember peeing but I'm guessing you didn't bring that with you…." He was himself, but not. Then the doctors left and he was back to asking his questions and reading the card.

Lately I’ve been eating lunch at an Asian food court with my daughter after her gym class on Fridays. We often see Chick Graning there, who is in a band I love called Scarce. I met him in passing years ago in the early nineties when I was going to clubs a lot, as well as his ex-fiance, Tanya Donnelly. Scarce was getting huge but then Chick had a brain aneuyrism and had to even relearn his own songs. I’ve often wondered if he feels like the person he was before; if he IS the person he was before. I stared at Glenn, who felt like Glenn to me and then like some stranger in his body. How much does a person’s memories make them who they are?

They sent Glenn to the ER Neurology Observation unit up on the Neurology floor, past a calm looking sleep lab. He started making a joke in the elevator “What…do I have BRAIN FEVER?!” he said it was a joke from a movie with Kevin Kline and Sally Field. It was me who didn’t remember the movie. “Soap Dish,” he said, as they wheeled him into his room. He did not explain the movie reference to the doctors or nurses he repeatedly made this joke to later, he just said “What? Do I have BRAIN FEVER?!” Sometimes he asked me if he’d made that joke before.

He had more vocal and coordination testing. The doctor stood at the end of his bed while a muted TV overhead showed a nude woman airbrushed for television. “Is this part of the test,” Glenn asked, “trying not to be distracted by that?”

I remember studying the sense of self and our concept of personhood. I don’t think John Locke, who believed selfhood depended on continuity of memory had ever seen how a person can keep their cognitive skills and most of their factual knowledge while interrupting their self narrative, their story for a day. This was Glenn, but not Glenn. I don’t remember reading anything about how a person keeps their personhood in another person’s perception, only their own. This was all too much to process -- the medical and the philosophical were seeming a bit hard to separate.

Jade made sure I had snacks, drinks, and a notebook to write in, and helped me jot down some of the doctor’s names. She got a sudoku and puzzle book for Glenn. A neurologist spoke in hushed tones to us in the lounge about the possibility of Transient Global Amnesia, a medical mystery they sometimes see where a person loses mostly their short term memory for less than 24 hours. She left and we tried to think about this concept.

Glenn was going for another MRI, so we decided to go home and eat. We asked Glenn if he’d like his computer or iPod but he didn’t want them. They took him for an MRI, and Jade and I headed to my house where Christie was just getting Lyra up from her nap.

Christie decided to bring Lyra to her house and have the kids play together and feed them dinner there, then put her kid to sleep, then bring Lyra home to put her to sleep and stay with her here. (Her husband was at home with her kid.) Jade’s husband Frank offered to bring us dinner. Jade asked me what I’d like, and I heard myself say I really couldn’t answer questions; please don’t ask me any questions. Frank brought burritos and then we headed back to the hospital, bringing along Glenn’s ipod anyway, as music is very calming and centering to him. We also brought my computer and some DVDs, but couldn’t find Soap Dish in his movie collection.

I asked the nurse if there was news and they said they were going to do some more scans and he obviously wasn’t “right in his head.” I was nervous but wondered if he'd been making the Brain Fever joke again. I talked to him and he seemed a bit improved to me. Then went out and asked if it was still necessary that he not eat. I didn’t see why it mattered for scans of his head. The nurse said of course he could eat. This angered me as we’d been told earlier he could not, and nothing since then. I made them get me some food for him immediately as he hadn’t eaten since the oatmeal.

Glenn was starting to remember things he had not remembered before, and he was not stuck in a question asking cycle, though was still clutching his card and still couldn’t remember the morning or the afternoon. He ate a turkey sandwich and remembered details from the previous night that he had not known before. His memory seemed like it was rolling back in like a slow tide. We sat and told stories in the fluorescent gloom, floating in slow hospital time. A new neurologist came in who was his assigned doctor. Both Jade and I immediately liked him.

The new doctor treated the condition and the patient alike with interest. Glenn responded well to him too. He was asked the same puzzles and memory tests and did much better. Earlier they’d asked him to list as many animals as he could in two minutes early and he’d gotten a handful of them. This time Glenn sounded like himself – he rattled over the most extensive and exotic list of animals you could imagine. The doctor was beside himself cracking up and said he’d never heard such a list. (Glenn’s list began with an animal we learned from Lyra’s alphabet book: a zorilla.)

I was feeling great about his doctor and his improvement and after Glenn had another MRI, they said they were admitting him (I was prepared to make them if they didn't), and Jade and I decided it was time to go home. Jade and Christie had both been helping me since before lunch and it was nearing 11:30pm. I came home and sent emails and looked up information online. Glenn meanwhile listened to some music, had his heart looked at, and had a third MRI. I was extremely relieved to be in my calm house away from crisis. Glenn was enjoying the MRIs -- he said the noise they make was like some experimental heavy metal he enjoyed.

In the morning my inlaws came and took care of Lyra while I went back to MGH. I was afraid to go. I found him in a shared room with a nice view of the river in Neurology. I’ve examined this view multiple times when I gave birth, as well as visiting my father recently after knee surgery. I'm starting to feel some ownership of the view. Glenn seemed entirely Glenn to me, though he was really tired. I felt reunited and relieved.

He was sharing his room with Bill, from York Beach, who had had a stroke the night before while playing cribbage with his brother. They were going to fly him there but the weather didn’t cooperate. His wife arrived while I was there, and seemed used to the drill. Bill had, after all, had five bypass surgeries already in his life.

While Glenn was wheeled off for an EEG, the head neurologist and the whole team came in and asked me a lot of questions about what happened. They all discussed this classic presentation of Transient Global Amnesia. It came on suddenly, was witnessed (we’re fascinated by what might have happened if he were alone), he did not particularly lose long-term memory or cognitive memory and was aware of who he was and his loved ones.

They left and I plugged in my computer and read everything I could about TGA. I’d lost my phone between the car and Glenn’s room, so I emailed updates and later had Glenn make calls from his phone. He got no answer from his parents, who eventually showed up at the hospital, and his sister had come over and was watching Lyra. They were in time for his discharge.

No tests showed anything, except an incidental finding of something benign on one MRI of cholesterol blob or something on an ear bone he’ll have scanned eventually. His EEG (brain waves) showed very slightly slower action on his left side, but he showed no typical seizure symptoms. He'll have another EEG in a couple weeks. They ruled out most everything. His arteries are pristine. (I was jealous he’d had so many scans. I’d like to know everything was well in my head and arteries!)

And I can heartily say with both meanings: I wouldn’t miss a minute of this. Glenn, however, is missing most of Sunday. And it will likely never happen again.


This is a Mayo Clinic description of Transient Global Amnesia.

I Thought I Was Thumbody

I was at the doctor again for a variety of things this week, including finally officially complaining about the insane arthritic-like pain in my hands and wrists. Apparently there is an official diagnosis for new moms with this -- it's a common kind of strain and it's particularly common in women like me who got carpal tunnel syndrome while pregnant. She wrote a prescription for wrist braces and had me take it to the Physical Therapy department. "Please restrain her thumbs," she wrote on it.

I spent the last two days laughing to myself imagining various Steve Martin-esque afflictions where my thumbs were jumping all around of their own wild and crazy accord. Then I imagined doing that seventies thumbs-up dance like Elaine on Seinfeld. When I went in today to get fitted for my braces, the physical therapist took out some standard wrist braces. "Oh no," I said, "you're going to have to restrain my thumbs," and then my eyes started watering because I was trying so hard not to giggle.

They took out their super cool plastic and heated it with warm water and molded wrist braces for me. We had a long discussion about the kind of plastic and how I could have all their scraps and use them to make things, remold handles on tools, keep bezels with stones in place while I set them and more. I was then given a stern warning that I was not to cut up my braces for art projects just because my wrists start feeling a little better. "You can," she winked at me, "decorate them with permanent marker if you like."

I agreed to wear them if I wasn't working and that maybe I'd wear one while taking care of Lyra. That mostly left sleeping, so I could deal with that. I was feeling pretty happy about things and I went to the cafeteria at the hospital before another appointment and tried to eat a tuna melt.

Somewhere between having the cashier put my change in my wallet for me and trying to clumsily pick up a dripping sandwich in my fingers I stopped smiling. It finally hit me: this actually sucks. I've actually been demoted down the evolutionary ladder. Even that thought was funny enough to get me through my next appointment. Then I tried to turn the key in the ignition of my car. This is the solution to high gas prices: restrain your thumbs.

When I got home I ate a big bowl of consolation ice cream and the post lady brought a package to the door and saw the braces and offered to bring me my mail, too. When I opened the package it was an unexpected present from the ever-amazing West Coast Bethany. The world was righted again.

Invisible Enemies and the Kick Inside

My back pain returned with such a vengence. I was fine in the morning, and in pain, but dealing with it in the afternoon, and then suddenly, in the middle of watching a movie at home, I got to redefine ten on my pain scale again. I thought I'd met it before, and I know I haven't experienced labor yet. I realize now that one of the key characteristics of this higher level is that no thought is involved. There is no room for brain activity when I'm at that level of pain, just a primative animal fear as an invisible assailant relentlessly gnaws on me.

There is no getting to detach from the pain and be survival girl thinking rational thoughts despite some fog. I was not even thinking "I'm going to die" or "I must make this stop." This was not the thing I imagined I'd feel if shot, and crawling toward some survival ability like a movie character. It is pure, overwhelming, pain. It replaced me. I've been told I have a high tolerance for pain numerous times in the past. I think the definition of pain is the key to that sentiment. I have no tolerance for this. I needed an off button and could barely even think to ask for help. I understand better now why some people never call 911 in emergencies.

I fell to the floor in agony and tears streamed down my face and I started to hear an odd wailing noise that I realized was coming from me. So, yeah, I spent last night at the hospital. Glenn had dialed the phone before my language skills had returned to tell him what was wrong. At least they take pregnant people right to the ER part of the baby ward pronto, no regular emergency room crap this time. Can you imagine...New Year's Day? I'd still be there.

So at the hospital I was tears and drool, biting the pillow case. They put the kid on a fetal monitor and made sure I wasn't in preterm labor, then ran labs. They gave me Demerol in my IV and a special heating pad that had warm water pusling through it while testing me for a million things and ultrasounding my guts and ruled out kidney and urinary infections, they looked at my kidneys for stones, and made sure there was no aneurysm involved in the aorta and looked at the cysts I have on my liver that have been being watched but didn't think that was the cause. It took another dose of Demerol for me to think maybe I'm okay with living. I asked the nurse if she could just hit me with a really big hammer since I'm not allowed to take so many things while pregnant and I am allergic to opiates (morphine was their first choice to give me). She said they were funny about hammers there at the hospital.

Kicky McKick is doing just fine in there. In the end because they ruled out the deadly things and because of where it is and the extremely specific narrow line of pain it is, they think maybe I injured my back somehow and aggravated it the other day or it's a nerve compression problem. If it is muscles they should be better in a couple of days, if it's nerves I'll have to keep experiencing it until a neurologist figures it out apparently. I have had seized muscles many times in my life and never have I felt anything Close to this. Once again, there is another mystery.

I never knew, by the way, just how much a baby kicks. I mean people have put my hand on their pregnant stomachs and had me feel a kicking baby, and I've heard "oh! that was quite a kick!" from people before, but I didn't know it was like this nearly constant writhing, punching little storm in the guts. I can actually See the baby kicking some of the time now, which was entertainment as I spaced out a bit with the drugs. I asked the doctor if all babies are so busy and she said "the healthy ones!" There is Some possibility my little slam dancer caused some kind of nerve freak out with her activity, but it wasn't the top of their list of guesses.

This entry was brought to you by Demerol, the only "Real" drug I've taken in 17 years of being clean and sober, last seen when all four wisdom teeth were ripped out over a decade ago. It's my new best friend.

Humans are Bizarre

I haven't written in a bit because I've been lying down and feeling horrible a good percentage of the time. I'm on day 7 of a wicked dose of two antibiotics plus Prilosec and yesterday was my first day I felt no pain all day. Today I feel crappy again, great. I have such a distrust that anyone knows what they're talking about. Do I really have an ulcer? I've been to work with people with ulcers who were not rendered immobile. Bodies are bizarre.

So on that topic, since I had to be in the Longwood Medical area in Boston this morning for a derm appointment, I walked back behind the big granite/marble grandeur of Harvard Medical School to Shattuck Street and into the library on the end there. I'd heard that on the 5th floor there was an anatomical museum. I figured I could pay over $20 to see the Bodies exhibit at the Museum of Science, or I could check this out for free. There I went.

Around the atrium of the 5th floor are glass cases. It's small by museum standards, but fairly intense. There are anatomical models of things used by doctors. There are a number of skulls or parts of deformed people, sometimes with a drawing of the subject. Typically they were operated on and then died of infection. Just over a century ago we didn't know as much about keeping things sterile and we had not so much anesthesia. (Though opiates, alcohol, cannabis, mandrake, and more had been used throughout history, and nitrous oxide is a 18thc invention, ether and its like came later.) Abitrary fact for you: Oliver Wendell Holmes, the writer of the poem "Old Ironsides" which helped preserve the US Constitution coined the term Anesthesia and also invented things like stethescopes.

Anyway in the cases were minute fetal skeletons from various ages, deformities, two truly disturbing skeletons of conjoined twins, on in which the spine ended up in a torso and head both directions, the skulls of a number of famous cases include Phineas Gage, and a lot of truly frightening surgical, midwivery, and autopsy tools.

No photos were allowed, which you're probably happy about.

I am Not Going to Die Today

So I went back to the hospital again today to see the doctor standing in for my doctor. Weeks ago, before my doc went on vacay I asked her "Do you think this could be giardia? I mean I've drank lake water, rolled my kayak in lakes, etc." "I doubt it," she said. Today I saw her stand-in. "Do you think this could be giardia?" he asked me. Argh.

Down to the labs I went where first a spunky woman in an excellent mohawk missed my vein, then bruised me taking four vials of blood. She also brought up the tv show House, which is just not allowed when a person is sick in the hospital. Then her boss had no idea what the code meant for needing several stool samples or why that would be. I explained it to her, because lucky me, I've had this done before. (Ask Me About Salmonella!) She nodded and thanked me and said she would have really screwed that up if I hadn't told her. How comforting. But we all knew I know how to give people shit, right?

Then I was off to radiology where I drank two containers of barium shake crap. It didn't taste nearly as bad as I expected but labeling them as "smoothies" is really a stretch. I sent glenn off to eat real food in the cafeteria while I let the shake boil my already tormented guts into a frenzy. I then hoola hooped with the CAT scan and was off to get stuck in traffic because between our house and the hospital is this funny little attraction called Fenway Park. The game was just starting.

I got home and relaxed for about half an hour before I got a call from someone at the hospital. Apparently there was a "lab accident" with my blood. They "tried to recover it but the techs wouldn't take it." (were they scraping it off the floor?) If I could come back in they'd let me park for free. I came back in. Mohawk girl looked stupid in her mohawk this time. I got her to confide in me what happened and she sounded like she was lying. She put four tubes in the Pneumatic tube but only three arrived. Now her boss has gotten her in trouble officially. While I waited for the parking sticker, her boss said "whose urine is this?" and the girl lied again. She then put the vial of my blood, that she told me she was going to hand deliver, into the pneumatic tube. I waited ten minutes for the parking sticker, then the parking lot attendant was gone and parking was free anyway.

I left and was just about clear to go around the proper rotary exit to make my way past the streams of people coming from the just ended game at Fenway and the cops did one of their brilliant traffic control moves. They put cones across that exit taking me away from the area and toward Cambridge and instead routed me down Brookline Ave., which if you're not familiar with Boston, is the street Fenway is on: traffic ground zero. I finally managed to turn around so I could take my turn and one hour and a half later was home. I mentioned that barium shakes bubble your guts right?

My lessons in asking for help are really not the ones I was hoping to learn. And yet... there is good news. The phone just rang. My doctor literally said to me "You are not going to die. Today." My CAT scan looked perfectly normal. My white blood cells are kicking ass, my body shows no inflammation. However. . . you knew there was a however after all those weeks of pain...that pesky bacteria H. Pylori has made shop in my guts. This is what is responsible for uclers, particularly duodenal ulcers. Two kinds of antibiotics and more Prilosec for a couple of weeks for me. Even better, one of the antibiotics is the same one they'd prescribe if I turn out to have giardia, which they don't know yet, because I still have to give Mohawk girl more shit.

Endlessly Ill

My abdominal pain came back in full force Friday. I got told to take Prylosec this weekend to see if it helps, like as though it is an ulcer. I've been out of comission for three days. I spent most of yesterday curled up with a heating pad. Even typing is hard because I'm very stiff, very tired, and my right hand and arm have a numb-tingly feeling in them. My stomach feels slightly better. The rest of me feels like I'm in hell anyway.

Please someone cure me soon.

Pop!

It took me many, many years to learn how to ask for help. I trust very few people, and am self-reliant to a fault. So this month when I found myself in extreme pain day after day and I went to get medical help, it was more challenging than I expected. I have a doctor. I have insurance. I have a flexible schedule. I picked up the phone.

There were the multiple times I was disconnected or transferred incorrectly on the phone at key moments of extreme pain. There were the times I called while the office was out to lunch. There was the getting a message to the doctor while she was in the middle of seeing other patients. There was the getting the message to the doctor while she was in the middle of seeing other patients and was the only doctor in the entire department in that day.

There was the tests they scheduled at 6:30am and explained that the room really didn't warm up until about 11:00am. There was the extreme pain and fever that required a trip to the ER that lasted from 5:30pm to 2:30am. There were six vials of blood tested, two hospital arm bracelets, and six different people who poked my stomach and asked how that felt. (Oh lovely. Do it again. I think that might be an 9, not a 7 on the pain scale. Let's do it again to be sure.)

What did I learn?

If you are in pain, you must ask and ask and ask and insist and be totally reasonable at all times even when you are frustrated. If you hear a part of you scream"No one is going to help me!!" kick its ass.

If you are an online research junkie, you must remember at all times that interpreting medical systems is something that requires many years of school and professional practice. If your pulse begins to quicken while reading too much medical jargon, go watch television or something equally lobotomizing.

Let your partner and your friends be supportive. They want to be. And it helps you. Get over it.

No one reads. Be prepared with a symptomatic soliloquy you can deliver over and over. And over and over.

Doctors do like to look at test results and charts and they can obtain test results from partner hospitals in a flash.

People are patient with you if you explain that you think you might be panicking a little instead of throwing a fit.

Hospitals have cozy heated blankets if you are cold and you tell them.

Just because your friends or loved ones have died does not mean you are about to die.

Some hospitals still use pneumatic tube systems.

There is nothing you can do to speed up your ER visit besides worsening your condition or arriving in an ambulance.

Sometimes ER nurses and doctors are just as attractive and attentive as TV ER doctors.

No matter how successful you are at asking for help, if it turns out you have a ruptured ovarian cyst, it will hurt like a motherfucker for weeks. ("So basically a bubble bursting can cause this much pain for that long?!" I asked my doctor who started laughing. "A bubble!? Well, consider an aneurysm," she said. She has a point.)

Jim Moran

My dear friend and hiking partner, Jim Moran, died last Thursday night. His wife Susan and I were with him. It was a difficult death from lung cancer, and it was unbearable seeing him in so much pain. Though he had not been able to open his eyes all day, at the very last minute before he left, he opened his eyes wide, looked at Susan and repeated three sounds that were undoubtedly "I love you. I love you. I love you."

His memorial was held on Saturday. He designed it, music, speakers and all. A friend read "Do Not Go Gently," three other friends reflected on their friendship and whatever topic Jim assigned them. His brother spoke. We listened to, and in some cases sang along to, songs. A letter was read to Susan that Jim wrote for the occasion. After all of that, I had to find a voice and speak. It was really hard. Jim asked me to speak on our friendship and on sobriety. At his death he was 18 years clean and sober, and this included cigarettes. Here's what I read:


I taught writing in the early nineties, and had one student who added a real charge to the class. By opening up, he created an atmosphere of trust in the room.

He wrote an essay about storm watching on Black Rock Beach near his old apartment in Cohasset. It had the kind of carefully chosen details we were working toward, the kind that require a real presence and awareness. And he included some confessional musing about being sober that clearly took courage. I wrote in the margin of his essay that I'd shared some similarly "sobering" experiences.

We didn't care that I was the teacher, that he was 26 years older than me, that we were male and female. We just found each other, worked on creative projects, stayed sober, and started climbing mountains.

In other words, we routinely exposed our souls, stayed alive together, and were humbled by forces bigger than ourselves. It was a very powerful recipe for friendship and for life. Some of the purest moments of joy in my life have just hit me out of the blue while walking along a trail with Jim.

Jim and I helped keep each other on the path for the next 15 years. We showed up and tried to be present for spiritual, physical, and psychological hurdles, constantly arming ourselves with new tools for expression. And we supported each other unconditionally in these endeavors. New forms, new media, new people, new programs, new languages.

This support was possibly my first real understanding of the idea of unconditional love. It's astounding how many people he gave this to.

He also taught me not to bottle up positive feelings. He would be talking about how glowy the light in here is or "look at that stained glass with the little dots in it!" and then probably take up stained glass. He never seemed to take anything for granted. Jim could add celebration to your world the minute you walked in a room "Beth-a-ny!" he'd exclaim, grinning like a fool. He said I was his tracker, keeping him on trail. If I was his tracker, he was my compass.

We spent weekends, sober anniversaries, and holidays together. And one year while five miles up Mt. Carrigan in a hailstorm, we found some shelter, he had me turn away, and he surprised me with tall, strawberry shortcake with whipped cream for my birthday.

We contemplated a great number of things in cars, over coffee, and on the trail. We discussed:
Whether art might be the difference between being dissatisfied and doing something about it.
Or, if you change yourself, and you give yourself to the community as a whole through your service, whether you may indeed be changing the world.
Whether it's possible you need to have lost someone you care about to learn real compassion.
And most importantly, just what would happen if a priest, a duck, and a mouse walked into a bar . . .

Jim had attained a certain degree of self-awareness that allowed him to tap into his core and while sometimes he struggled with what he found in this well, there were also these big bubbles of mirth that rose up. We giggled together with abandon, child-like awe, and total goofiness. And I think the risk taking involved in being sober, the facing and talking about difficult things and walking through them to the other side is what allowed us this gift of humor and fun.

One time when I arrived home alone after camping in Alaska for two weeks, I played my answering machine messages and heard, "Hi Mr. and Mrs. Ericson, this is Jim Moran, a friend of Bethany's. I am so sorry Beth was eaten by that bear. I just wanted you to know that before she left she told me that if anything were to happen to her that I should have all of her camping equipment."

His humor gave him an incredible attitude during physical hardships. I remember when I took him to the pharmacy after he hurt his shoulder and he'd drawn a smiley face on the tennis ball his hand held while his arm was splinted. The tennis ball had a very funny discussion with the pharmacist about Jim's needs.

And he could even laugh in the face of cancer. I was with him on one of his earliest of many scary meetings about his prognosis. The doctor was flustered. "Hello James. I see you've brought your. . .your. . . a um, well I see you've brought a young lady with you." The doctor then explained how a person can get lung cancer 18 years after quitting, and stopped after each point and looked at me and explained the equivalent in breast cancer. We burst out laughing when he left the room.

After waiting too long in the VA clinic one day we had a loud mock fight pretending he gave me his cancer cooties. I told people he got his cancer on www.cancer.com. We arrived nervously for one of his P.E.T. scans under a sign that read Boston PET Center, and laughed our way in the door. When he told me last month that he wanted Ted and I to bring some of his ashes to Mt. Osceola, I complained that he was just trying to get us to finally carry him Up a mountain.

Jim was my role model, and he fought for life every last inch of the way. He and Susan's love for each other and the work they did to make sure each other knew it has been incredible to witness. Jim once told me about the idea that hope manifests in us as long as we have a voice in what happens to us. The fact that I am speaking in a memorial he designed, says his hope was so strong it outlived him. When he asked me to speak he told me sternly "you have five minutes." We stared silently at each other. Then we burst out laughing.

When Jim was given four months to live in July, he said he'd just live his life in four-month increments until he was in his eighties. It wasn't until a month ago that he and I had a discussion about his impending death rather than impending life. He felt that what would happen after death was that he would live on as energy in other people, slowly fading out over time.

I am forever grateful Jim walked next to me for a while. And his energy connects this whole room full of people, and many, many more. This connection is possibly one of his greatest achievements. Don't leave him here. Bring him along with you: Live every day fiercely present, with grace, honesty, and humor.