100 days of hard road

Warning: This blog is not written in my usual cheerful tone. It’s bleak. It’s about physical and emotional pain. If you’re in the midst of a hard time yourself, please don’t subject yourself to it. It’s guaranteed to bring you right down.

***

For the last three months, my everyday world has been colored by a feverish red wash of hot, searing pain – nerve pain that has brought me literally to my knees.

It started on October 26, 2018 – the day the Los Angeles Dodgers and the Boston Red Sox played in a grueling World Series game that went 18 innings and lasted 7 hours and 20 minutes. I watched every minute of the game from our hotel room in Maui, propped up in bed. Those 7+ hours were my absolute undoing, and they would begin my nightmare.

We’d gone to Maui – a place we normally think of as Paradise – to celebrate Julie’s retirement. But now we wish we’d never made that trip. Paradise turned into hell.

***

I doubt that anyone I know would dispute that throughout my life I’ve suffered from a plethora of embarrassing medical conditions. If this were going to be a funny blog, I would probably list some of them, although perhaps it wouldn’t be prudent and ladylike to do so.

But I’ve decided to open up about my current situation, precisely because it’s not something people ever talk about.

What I suffer from is called pudendal neuralgia, and if you know what “pudendal” means I really don’t have to explain it further. It’s an indescribably severe and terrifying nerve pain – a relentless, crackling burn. And it’s in your pelvic area. Your personal, sensitive “zone.”

The condition is made all the more horrifying by the fact that people who live with it, like me, are too mortified to tell others what the heck is going on. So it’s as lonely as it is devastating.

If you have pudendal neuralgia, people around you see no injury. No cast, no sling, no bandage. Everything looks normal. But you feel like a match is being held to your tissues. And there is no making it go away. You cannot rest. You cannot salve the pain. You want to plunge yourself into ice. Your body crackles; your brain sizzles.

Pudendal neuralgia can afflict both men and women, so it’s not a “lady thing” by any means. Men often get it from riding bicycles for too long a period of time. Typically it happens when the nerve – which runs through your lower back – gets somehow damaged.

The condition is baffling, and there is no guarantee that it will lessen or go away. I constantly ask myself, “Will I have this the rest of my life?”

***

My nerve was damaged 8 years ago, and I live with a very low level of pain every day that I can easily manage. But I’ve had a couple of flareups in the last few years, and while the first one lasted only a couple of weeks, this one has gone on for many months. Foolishly I caused the flareups by lying in bed too long reading or, in the case of last October, watching television – a position that puts too much pressure on my lower back and, as a result, on my surrounding nerves. Since then, I’ve been walking endless excruciating miles of bad road.

[Those damned Dodgers! As if I needed another reason to hate them!]

As I’ve dealt with this latest bout, I’ve discovered that the only position remotely comfortable for me is standing. Imagine not being able to sit down. Julie, always so resourceful, set up a standing desk for me so that I could work at my computer, and she’s bought special cushioned mats for me to stand on. She also found me a “kneeling chair” to help take the pressure off my feet. So I spend my days upright at my desk, reading in the kneeling chair, and walking in loops around the house just to get some exercise. I had been given a Fitbit for my birthday and one day it started buzzing at me, “fireworks” lighting up its screen. I had walked 10,000 steps in my own home, trying to walk the pain away.

The nerve pain gradually gets worse as the day goes by, so there is no way I can see anyone or do anything in the afternoons or evenings. No movies, no plays, no shows, no dinners out, no nothing.

Unfortunately, standing all day has taken its own toll. My knees have started to seize up. My feet are raw. And my back pain has spread. Everything aches, so it’s hard to sleep in a comfortable position. And now, because of nerve “cross-talk,” the bottoms of my feet prickle and burn. My teeth and fists are often clenched from pain. I am simply exhausted.

More than once I’ve gotten down on my knees to pray.

“How am I supposed to live like this?” I asked Julie once.

My friend Char wondered the same thing. “How do you keep your sanity?” she wanted to know.

***

It can be nearly impossible to tell concerned friends and neighbors about my condition. I mean, when my neighbor asks me how I’m doing, I can’t really answer, “Well, Roger, right now my crotch is on fire.”

Some folks believe I should “reach out” to others more when I’m in distress. But that is not my nature. I don’t like bothering people. As my friend Julie R. says, “The drowning person doesn’t reach out! The folks onshore do!” I really love that metaphor, although I’m still trying to figure out whether it completely makes sense.

When close friends and family do check in with me, though, I don’t hide my situation, and I’ve been fortunate that many of them have tried to help with visits, rides, suggestions, information sharing, and – I know it’s practically an anachronism – phone calls. Oh, and a trip to a dispensary.

My friend Ganja (ok, yes, that’s not her real name!), despite my reluctance, dragged me to met me at a dispensary south of Market Street in San Francisco. I smoked dope (as we use to call it) a few times in my youth, but it was much weaker then. Once I got into my thirties I stopped wanting to ingest any drugs whatsoever, including prescription medication if I could help it.

So last month I entered the new world of state-legal cannabis grudgingly. But Ganja showed me the ropes and the products. A most supercool young bro helped us out and I came home with some CBD (the nonhallucinogenic compound derived from the cannabis plant). I’ve used it a few times, and I can’t really tell whether it helps with the nerve pain, but there appear to be no side effects, so I’ll continue to try it when needed.

My pusher Ganja, though, thinks that we can be stoner buddies, so she’s been nudging me into trying TCH (the psychoactive component that can get you high). One night we shared some tasty THC-infused granola, waited the requisite hour before the effects would kick in, and then proceeded to not get stoned. We couldn’t figure it out. But I’m not ruling out another shot at getting carmelyzed in the future.

***

I once asked my mother what it was like to give birth. She was 22 years old when she had me, and it was no walk in the park. In those days, of course, there were no Lamaze classes. During labor women typically were given some form of anesthetic, but when I decided to enter this world, there was a snafu at the hospital and the machine wasn’t available. My father, meanwhile, was at home with a ruptured disc. So Mom went through her long, painful labor with no preparation, no anesthesia, and no husband nearby.

Anyway, when I asked her about the pain, she said, in her typical dauntless way, “Well, it hurts, but it’s not like someone sawing your leg off or anything.”

This harrowing scenario of someone sawing my leg off has always been my benchmark for “Level 10” pain. But most of us won’t ever experience being wounded on a Civil War battlefield, so these days when we’re asked to assign a number to our pain, we’re told that a Level 10 is “the worst pain you’ve ever experienced.”

Neuralgia is definitely, for me, a Level 10.

Lest anyone think that I am exaggerating, I have a high pain tolerance. In December 2015 I missed a step in our house and thought I had sprained an ankle. We took off a couple of days later on our 2,300-mile road trip to Kentucky, and I walked around on my tomato-red, swollen foot like it was nothing. By the time we got to Louisville, however, it started to seem like the pain was maybe a liiiitle too much for a sprain. An urgent care visit and a few X-rays later, it turned out that I had a torn ligament and had broken my foot in two places, including the heel.

A few years earlier I had a kidney stone. When the doctor said I needed to have surgery because the stone was too big, I tried to talk him out of it. I thought I should just go home from the hospital and deal with the pain like any other tough soldier. He thought that was absurd and admitted me for surgery, against my protestations.

But I would rather have 10 kidney stones than this condition.

***

This year, Julie, Buster, and I postponed our Thanksgiving road trip to Kentucky in hopes that I’d be better by Christmastime, but we had to cancel that trip as well. I just couldn’t sit in a car comfortably for 5 days, let alone deal with all the nerve pain. It was devastating, but I encouraged Julie to fly back herself. Why should she stay home and be as miserable as I was?

It was a lonely holiday for me, to say the least. I missed Julie and the rest of my Louisville family dearly. But on Christmas Day I got a call from my friend Mary, whom I’d first met in 6th grade and who, coincidentally, lives in Kentucky now. She called to wish me a Merry Christmas and we had a wonderful chat. She also recounted a story that has given me hope ever since. She said that a few years ago she had bone spurs along with pain and spasms in her neck, and to top that off, every time she looked up towards the sky she got dizzy. She was told by a specialist that she would need surgery, and it would involve . . . well, there’s no sense in reciting the gruesome details, other than to say that while she’d be on the operating table her head would not be attached to her neck in any usual way. And her personal physician told her that she would be in a wheelchair the rest of her life!

When she heard all of these prognoses, Mary said, “That scared me so much that I actually recovered!!”

She’s had no neck problems since then.

This story has made me laugh many times. But it also gives me hope. Mary says that the power of prayer helped her, too. I keep trying that. Maybe fear and prayer are the answer.

***

It’s amazing how long it takes to wend one’s way through the health care system these days. Three months have passed since I hurt myself. But there are weeks of waiting between each appointment. So far I’ve seen my primary care doctor and two spine specialists. The first specialist, a well-respected neurosurgeon, was so cavalier about seeing me that he asked me twice why I thought he could help me. I was coming to him because my doctor had referred me, that’s why! But I didn’t say that. I just stammered. He blew me off and sent me on my way with nothing.

I then went to see my primary care guy again to ask for a second referral. Now I am under the care of another renowned surgeon (he worked on Joe Montana’s back!), who thankfully took me more seriously and ordered X-rays and MRIs. I’ll get my latest results from him in February. Keep in mind that I started seeing him in December. It’s an eternity just waiting for appointments anywhere.

Meanwhile, there are the frustrating days on end that I have spent on the phone, dealing with my primary care office’s wrong referral codes, incorrectly written prescriptions, and office staff who never answer the telephone.

***

I recently read an article in which six doctors and pain researchers were asked what they considered the worst pain to be. They all said it was nerve pain and/or pain that you feel you cannot control, or that will never end. Chronic pain makes you feel unsafe, one of them said. “Acute pain is unpleasant (even extremely so),” said another, “but chronic pain is about suffering.”

I realize that there are people out there who are far worse off than I am. There are people battling cancer, for crying out loud. I remember that when my mother was at her absolute wit’s end caring for my demented father, or when she herself was battling cancer, she would always say the same thing: “There are people worse off than I am, so I shouldn’t complain.”

But I would always answer, “Mom, that makes no sense. If the only people who are eligible to complain are the people who have it worse than anyone else, then the only person allowed to complain is the ONE person who is the most worse off in the entire world! And he is probably the one getting his leg sawn off!”

***

My physical therapy friends have been terrific listeners. One of them, Jill, even FaceTimed me last week so she could use a spine model as a visual aid while she explained what she thinks is going on with me. And I believe she’s right. I have a tailbone that is angled differently from most people’s. (I think I broke it twice, although I never went to see a doctor.) She thinks my lying on it puts pressure on the middle of my tailbone, which stretches the ligaments, causes inflammation, and presses on the nerve. I know she’s right, dammit! Someone just needs to LISTEN to me!

This is a complex condition that won’t be magically solved by any one approach. I do think it’s possible that, if the MRI results are unhelpful, my best hope may now in fact be physical therapy. It took me 6 weeks to get PT appointments but they are coming up this week. One is for my back and the other is for pelvic pain. Amazingly, there are actually specialized clinics now that deal only with pelvic pain and offer hope. The forms for the clinic, though, terrified me; I had to sign one indicating that the treatment might cause me “physical and emotional distress.” A friend of mine told me that she had once been prescribed pelvic PT and never went, out of embarrassment.

I, too, am scared. But I’m hoping that good therapists will be able to help figure this all out. I just need the pain to stop, please, stop.

***

So how are things these days? Well, I’m taking Gabapentin – an anti-seizure medication that’s been shown to work with nerve pain. (Opioids don’t work on nerve pain, and they make me violently ill anyway.) And I’m worn out from standing all day.

Every once in a while I have a good day. That’s an improvement, and maybe my nerves are settling down just a little. My mood has brightened a bit. Occasionally I find myself able to laugh.

But most days I feel like I’m walking barefoot across an endless expanse of blistering desert, broiling on the inside, facing a searing sun.

***

So what’s my point? Why did I write this difficult personal post, against my nature?

Well, partly it’s to explain my absence. I’ve been a hermit since last October. And when I have seen people, I’ve been withdrawn, cranky, ready to jump out of my skin.

But the larger reason is this:

There are many private sufferers out there, like me. Maybe you know someone in a similar situation. Or maybe some of you are struggling with issues you don’t want to talk about. If so, I hope you know that you are not alone.

The one modern cliché I’ve fully embraced is that the person standing next to you might be hiding pain and troubles. We should all go through life remembering this.

**

I have a generally healthy psyche, a glass-half-full outlook on life. I don’t think that’s changed. But it has certainly taken a long hiatus.

My poor Julie, who has suffered along with me, says, “As soon as you are better, we’re going to take on the world in a different way.”

My friend Kati, who just weathered a tough year, has a beautiful outlook on things. As 2019 arrived she said, “Instead of ‘Happy New Year’ I’d like to say Peace through your days, see God in the worst of it, and when you are desperate, despondent, grieving, or struggling may you find one shred of life to hang on to until you can once again feel its worth.”

I am hanging on. And when I get better and can feel life’s worth, I swear to take on the world in a different way.

 

 

 

Due to popular demand, I am including, at the end of each blog post, the latest random diary entries that I’ve been posting on Facebook for “Throwback Thursday.” These are all taken absolutely verbatim from the lengthy diaries I kept between 1970 and 1987.

1/6/72 [age 16]:

“You know, I brought a pair of black shoes to school yesterday (no, Tuesday) for Mary Pasek to wear to the PAL meeting. She couldn’t come and I LOST the $20 shoes of Mom’s. She was upset. I found them yesterday in my locker. And last night I lost my Physiology oral report and had to do it today. I found it in my locker but I didn’t have much time to practice. I LOSE EVERYTHING! 💧- teardrop”

1/1/72 [age 16]:

“This year is going to be a biggie. I tied my radio to my new bike today and took off. Miles and miles. I went south to Crown Super and north a little past Piedmont Hills. I rode around a lot in between. When I reluctantly crawled exhausted back in the door, Mom said from now on I have to tell her beforehand exactly where I’m going. But I can’t do that; no, I have to be FREE!”

12/1/71 [age 16]:

“I think there are two desires I have at this stage of life: friendship and music. I do not like to be in a crowd. But I do like companionship – say, one friend who can really understand me. That would be very difficult. Also, I love my records, and I simply could not exist without my radio. Am I 33, reading this now? Do I still listen to rock?”

11/29/71 [age 16]:

“Once I dreamed I made love to Daniel Boone. (He looked like Fess Parker.) That was the start of my physical desires. Strange, but up until then I really had no knowledge of bedroom procedure.”

11/5/71 [age 15]:

“I’ve sort of been down lately. I guess I’ve been thinking too much – arguing things out with myself, trying to figure people out. I’ve been drifting over towards the liberal faction because my so-called “conservative” friends have gone bananas.”

9/26/71 [age 15]:

“I read Death Be Not Proud by John Gunther, about his 17-year-old son who died of a brain tumor. One day John Jr. wrote in his diary some words which I feel describe me, coincidentally, perfectly: ‘About 1/2 time my conscious mind is either asleep or wandering off in space. . . . I am greatly over-introvert – caused by over-consciousness of what others think of me.’ If there is a more accurate description of myself in the world, let it be found.”

9/21/71 [age 15]:

“PANTS! Mom said today I could wear pants once every 2 weeks to school. I guess she was in a good mood or something and I have been especially good lately. But what great maneuvering power you have, Paula!”

9/11/71 [age 15]:

“It wasn’t a great vacation [in Clear Lake]. Mom is trying to quit smoking and she was a bear. Worse, I think. She won’t eat, won’t talk, won’t anything. And to top it off, the fishing was lousy. Dad has promised Mom this trip to Clear Lake, 2 dinners, a shotgun, a new rod and reel, and a stereo if she quits. I sure wish she would, but I don’t think she’ll make it. I was so nervous that I ate three Nutty Buddies.”

9/4/71 [age 15] [Ed.’s note: my brother and I, who are medical miracles because we always develop identical maladies simultaneously, had both gotten plantar warts on the bottoms of our feet]:

“Last night Marc’s wart fell off and I was replenished with hope and got this brilliant idea to lift up the edges [of my wart] and put Wart Remover right on the quick. I ran around the room screaming for 15 minutes. Ever had acid eat away at you?”

8/4/71 [age 15]: [My parents had gone to Tahoe for the weekend and left us with our Italian aunt and uncle in San Leandro]

“Mom and Dad went to Tahoe and dropped us off at Zio and Zia’s house. Meals are TERRIFIC! And we got to watch COLOR TV!”

7/14/71 [age 15]:

“We went to the doctor today. I’m 5’6-1/4” and weigh 126. According to his chart I’m 13 pounds underweight. But FORGET THAT! I’ll stay where I am.”

 7/11/71 [age 15]:

“I went to the dentist with [my brother] Marc and [my sister] Jan and Mom today. We were there from 12:45 until 3:45. I was the only one with no cavities. Jan had one and Marc had two. Ha ha for Marc.”

7/4/71 [age 15]:

“This week was fun. The police never bothered us, even though firecrackers were part of our basic everyday diet.”

6/29/71 [age 15] [Part One of Two]:

“O H, W O W! The thrill of my entire life has happened. Last night Carolyn Edmonds asked me to come over along with about 4 other girls because Mary Blasi is here. She had been 2 years in Hawaii and had come to visit. I was glad it was all girls – I don’t dance. [But then] Kevin Daly came over. Uh, oh. It seemed Carolyn had asked some guys from our class that afternoon. [Ed.’s note: all the invitees were fellow graduates of St. Victor’s Elementary School.] Soon Pat Pisturino, Jose Salcido, Mike Necas, and Art Pasquinelli were there. Uh, oh. I just sat on the couch and sweated, hoping they wouldn’t dance. Then all of a sudden P A T  S E A R S came in. I almost died. His hair was pretty long, and I like him. He was like the old Pat, but his voice was a little deeper. Then came the inevitable – dancing. Fast. It was horrible. Mary and Jean Greiner and I sat on the couch nervously eating pretzels. I think we ate about a million – it was a huge salad bowl and we reduced it to crumbs.”

6/29/71 [age 15]: [Part Two. I asked my young self for permission to reprint this.]

“Then ‘Hey, Jude’ came on, and they dance slow to it. But I haven’t ever done that either. Pat came over, took both my hands, pulled me up and said ‘Come on, don’t say you don’t know how.’ I said, ‘Teach me, Pat.’ And he did. Kids today, I noticed, just put their arms around each other and sway. He said (I’ve got to capture the conversation) ‘It’s easy.’ Me: ‘Not when you’re as uncoordinated as I am.’ Pat: ‘But you’re not. You’ve got to have some grace to be in athletics.’ Me: ‘Yeah, but I am a complete idiot at home.’ Pat: ‘We’re all a little clumsy. I am. All the Sears are.’ Then he told me about something he had just done, but I wasn’t listening. I was trying to keep off his feet. The music was almost over. It seemed like people were watching me. But I felt so good. I had never been so absolutely close to a guy before. I loved his back and the feel of his hands on mine. Don’t make the song be over, God. It’s a long song, believe me, but it went so fast. I was the biggest clutz in the world. At least everyone else was dancing, so they wouldn’t notice. He was so nice. As soon as the music stopped, Mom came. Aarggh. I’m always the first to leave. I wanted to stay. I begged her to stay. But no.”

[Ed.’s note: I was working in the stacks at the SFSU library seven years later when I was suddenly overwhelmed with rushing memories of Pat. I had to sit down. That night my mother called to give me the news. Patrick Conley Sears had died on September 1, 1978, in a plane crash near Anchorage, Alaska. “I loved him,” my diary entry says. He was 24 years old.]