The Girl In The Pool

As part of my pain fighting routine, I swim 3 times a week at the Physical Therapy facility I was treated at recently. I now have a gym membership which allows me access to all the equipment they have, including their lovely, warm pool. I have been doing this for about 2 years.

A few months ago, I noticed someone new in the pool. I'd see her once in a while and my only -- admittedly short-sighted and somewhat prejudiced -- thought was that she was obviously an athlete because she was in excellent shape, the kind of shape anyone would be envious of but those of us who've spent our lives as non-athletes can really envy.

Most people in the pool stay to themselves unless in a class or you've simply seen each other far too often not to say hello. By nature, I tend to stay to myself and go about my routine, which takes about 1 1/2 hours. It seemed to me that this girl -- who is probably in her early 30s but that's young to me -- was of a similar mind: keep to yourself, do your thing and leave.

Last week, I arrived just as the arthritis class of about 4 women were leaving. This girl was also in the pool but was in the jets at one end which usually signals the end of your workout. So I expected her to leave soon and to turn off the jets. But she stayed. I started, as I do every workout, by walking up and down the pool -- forwards then backwards 30 times. After about my 5th lap, I glanced up to find this girl half kneeling on the seat by the jets nearly in tears. I couldn't remain silent.

I said, "I can feel the waves of pain coming off you. You're having a bad day, right?"

And she started to cry. Just tears coming down her obviously agonized face.

I added, "I honestly do know how you're feeling."

And she started to tell me her story.

Nothing I had assumed was true. Her body's excellent condition is genetics; she hasn't worked out since 2000 because of a back injury which lead to neck problems which lead to low back problems and on and on and on... with no real relief. She wears a pain patch (I don't know what kind of medicine it is) that she rolled her eyes at and said how much it didn't help. She talked about her doctor and the rest of her pain team, all of whom she likes except the pain doctor himself (on a team with a neurosurgeon, pain psychologist and others). She said he was an ass and didn't hear anything she was saying and she was beyond frustrated.

Sounded like deja vu and I told her some of my own story. We talked as I continued my routine and she lingered in the pool, doing more stretches and floating, as we all do when we're done working out. She told me she's not a talker or a cryer but she'd reached her saturation point that day. As we were alone in the pool for about an hour, we talked and compared notes and commiserated. It is rare that you, as a pain patient, have this kind of opportunity to actually talk to another pain patient. Unless you're in a support group -- and so many of us aren't joiners by nature and our pain makes us even less likely to join -- there is no give and take between people going through the exact same thing, dealing with chronic pain, as we are.

She left the pool before me but I followed a few minutes later. When I got to the locker room, she was showering and I could hear her efforts to just move in the shower. By the time I was dressed, she was drying off and nearly in tears again.

I said, "It hurt to even get dressed, I know."

That's when she turned to me and said, "Thank you for talking to me. I'm usually not a talker but you really helped me today."

I got a little choked up, I admit, because helping people going through the same horror I've been going through for 40 years feels good. I actually find something -- finally -- good in what I've experienced with pain. If I can give one person a little understanding, then that helps me in return, to feel I'm accomplishing something for someone else. It's a great feeling.

I told her, she was welcome and to just remember there really are people out here to understand.

She told me her schedule and I told her mine. I wasn't able to get back to the pool this past week but I'll be there this coming week. If I run into her again, great. If not, I know I gave her a moment of understanding and, sometimes, that's all it takes to lift our burden, at least for a few moments.

The girl in the pool said I helped her but she helped me just as much. I got a kick in the ass for making assumptions about other people but I also got validation in return for my empathy and that is as a better pain pill than most.

DNA Pain Study

I am a patient at the USC Pain Management Clinic (Los Angeles, CA), have been for approximately 30 years. About three months ago, I became part of a DNA study about how the body of a chronic pain patient processes pain medication. It involved a DNA swab of the inside of each cheek and filling out some rather long, in depth questions about different aspect of my pain, of my daily ability to maintain my health, myself and my life. I got the results this past Monday.

The outcome told me that I am NOT susceptible to opioids . I already knew that from my lengthy dance with pain meds; trying this, trying that, etc etc etc. But having it written in medical-study ink gave some power to me as a patient. This study indicated strongly that I can be given opioids with no risk of physical addiction.

This is a new study and I don't know if it's taking place anywhere other that USC. But it seems to me that this is a HUGE step forward in pain treatment. If doctors can run a DNA test to see which medications a patient is and isn't reacting well to or has the potential to react poorly to a drug or family of drugs, addiction from doctor prescribed opioids would drop significantly. Which would mean more effective treatment of acute and chronic pain, especially chronic pain. People who can chemically process opioids would be able to rely on them without doctors and hospitals and family and friends and the public thinking them drug addicts.

This is just a first step. But it's an excellent step. One I will continuing taking part in. My recent visit to my pain doctor also included filling out questions again. They are lengthy and address different aspects of chronic pain and how it effects your life but that's a good thing. Details given by patients along with the DNA information is how treatment of pain is going to grow past the sense that you're a criminal if you ask for pain medication, even with good cause.

I have been fortunate to be treated at USC Pain Management Clinic by Dr. Linda Rever for 30 years. She knows me. She knows my reactions to different treatments; we've tried everything there is to try over time. And we might go on trying new things to see if my treatment can be taken in a different direction for better pain relief.

The study also showed my body's reaction to the other medications I'm on; a cocktail of multiple pain blockers. It showed I have a tendency toward toxicity with two of the medications in that cocktail so now the doctor knows to track those two drugs more carefully, to test for side effects. This is also information for *me* to use. I now know what to watch for in myself and to track what is and isn't normal reactions to the medications I take each day.

This is a powerful step forward in the shadow of the CDC's recommendations about opioid prescription, it's advice to try everything BUT opioids before prescribing them. Which sounds fine unless you're the person in pain right now. Not in a week, not in three months, NOW. Trying hypnosis and meditation and using psychological tools to overcome pain sounds great. But from someone who is often stricken with pain so bad that I am immobile, the only thing that will allow me to live to the next day when I am stricken with this level of pain is serious pain medication.

Not to knock these other treatments. I've been meditating regularly for about 30 years. Every night and, if it's a bad day, more often. I regularly see a psychologist who helps me deal with living every day with chronic pain. I've tried hypnosis and acupuncture and acupressure and things that seem like Voo Doo. I'm not telling anyone not to try alternative methods of pain relief. But access to opioid medication is necessary. Until something else comes along to indicate more precisely how each person should be treated -- possibly a DNA study of chronic pain -- they are the best option we have.

Some Sad Words

I am stunned and in shock and don't know what to say yet. But this is my Facebook post from this morning. For now, it will have to suffice.

My sweet friend, Tyr Jósue Rousseau passed from liver failure last night. He was 36. I met him as a teenager and over the years grew to love and appreciate the beautiful human being he was. Loving and generous and just so, so kind. He became my confidant and companion in silliness. He was a delight. His demons were strong but he fought as hard as he could. His body failed him but his spirit was so strong. Love and deepest sympathy to his husband, Finor André Rousseau and his sister, Margarita Valencia. Love you both so much. Tyr will always be in my heart.

Now, a week later on April 23, I'm not quite in so much shock, although this past week has seemed like a very horrible dream. I thought I'd just write and see what happens. 

I met Tyr, as I said, when he was about 18 years old. He and his friends (George and Scorpion) would hang out behind the booth my business partners and I had at the Palm Springs Street Fair every Thursday night. The boys caught my eye because they were Goths but also because they were sweet when they bought incense from us. As time passed, I got to talking with them, especially Tyr, and he eventually joined me in the booth to help sell intense on Thursday nights. Between customers, we'd talk about anything and everything and came to know each other pretty well.

He and I started meeting up for lunch and/or a movie or just to browse Borders in Palm Desert. I was invited to his house and he pet/house sat for me in Yucca Valley when I had 7 cats. After the first time, he swore he'd never sleep in my house alone again; it spooked him. He also saved me from several computer tantrums, always patient with my low-tech knowledge.

Then came my obsession with the TV show, The Sentinel, and in particular with one of the stars, Garett Maggart. Tyr joined me for a charity event in Big Bear, California at the Moonridge Zoo (an animal refuge for injured wild animals that cannot survive in the wild and which has a different name now that they're moving to a new site: Big Bear Alpine Zoo). The zoo is Garett's chosen charity and every year fans of The Sentinel would get together for an online auction to raise money for the zoo. There was also an on site auction the day of the event. We raised well over $10,000.00 each year.

The first time Tyr and I went, in 2002, we had a great time looking at the animals and talking with fellow fans and just hanging out at a really cool place. The zoo was on a hillside with dirt and gravel terrain which could be a bit slippery. Without any fuss, Tyr would offer me his arm, worried that I might place a step wrong. He was like that, gave what was needed without any attention being paid to what he was doing or why he was doing it. He gave me dignity when I might have felt uncomfortable asking for help.

We waited in line for Garett's autograph and, as we drew closer to the front of the line, Garett had already mentioned the presence of another "dude" (the people who attended the even were mostly women) but when he finally saw Tyr clearly, the first thing he did was stand up and say, "Ozzy fucking Osborn!" See the picture below for clarification.

At the time, Tyr carried this lunchbox with him everywhere. He was seriously Goth. His hair was down to his waist but it was pulled back in this picture. Garett was fascinated with him and, ever after, I always teased Tyr that Garett liked him better, which never failed to make Tyr laugh. Even when I went to events alone, Garett would ask after Tyr. He made an impression everywhere he went.

By the following year, the Goth look had mostly faded away, leaving this beautiful face and knowing eyes revealed. This is a picture of Garett, Tyr and myself in 2003 at the Moonridge Zoo charity event. Garett insisted on all three of us being in the picture and was making jokes and all three of us were laughing so hard that this is the only picture of many that really came out clear, when one of us wasn't moving due to laughter. I think this was my favorite year in Big Bear.

As you can see in the picture above, Garett's about my height, which is far short of how tall Tyr was. So, in 2005, I guess he thought they had to be the same height. This is Tyr trying to be short and Garett trying to be tall. Tyr had cut all that beautiful hair off, too, and started wearing glasses. I took him to get his hair cut off and I think I cried the whole time; he just laughed, mostly at me.

And, finally, in 2006, the picture that embodies Tyr to a "T". He didn't want me to take his picture and actually refused to have a picture taken with Garett that year. He was feeling unattractive and had been depressed. It took some convincing to even get him to go with me that year. So, while he was sitting on a bench at the zoo, I just pulled out my camera and waited him out. He eventually looked at me and ducked away so I didn't get a picture of him at first. Then I got this one... with editorial comment.

I love this boy, this gentle man he grew into in front of my eyes. He was a website designer and did my website for me in exchange for tattoos (when I was a tattoo artist). I always enjoyed tattooing him because he complained the whole time but never wanted to rest when I offered. While tattooing winged lips on his thigh right above his knee, I heard some of the most creative cursing I've ever encountered. He called me names, laughing and crying and just generally trying to get through it any way he could. But he came back for more so it couldn't have been too horrible an experience! Such a good guy. So caring and generous and fun to be around.

I will always love him. Though he was 20 years younger than me, there was rarely an age issue. Once in a while he wouldn't get a reference I made -- and I often was clueless about things in his life, which he then taught me about -- but, other than that, we were equals. He went to a few plays with me. He came to my parents' house in Huntington Beach to help with computer problems. He called a few days after I had my 3rd neck surgery and was healing at Mom and Dad's. I was so out of it on pain meds that I didn't remember talking to him but I apparently talked to him for quite a while. *That* was something he always liked to bring up to tease me about.

Tyr meant the world to me. When he met Finor, I saw how happy he was. I saw how important this new man was to his life. And I kinda fell in love with Fin a bit, too, because he made my friend so happy. I attended their formal wedding at their house in Palm Desert. It was such a beautiful day. The yard was gorgeous, as were the grooms. I cried a bit, I'll admit. Fin came to be my friend, too.

When they moved to Portland, Oregon, our lives separated, as lives will when distance becomes involved. But I talked to Tyr on the phone and we e-mailed a lot. I saw him and Finor only a few months after I moved to Corona. They came to my house and we had a good time before they had to leave to drive home to Portland.

That was the last time I saw Tyr and I didn't talk to him much after that, either. Do I wish I'd been more insistent on communication? A little. But Tyr's life had gone in a direction I couldn't be part of and so did my life, veering off from his. I thought of him often, though, and continued to consider him a dear friend. I always will.

His passing has been extremely difficult to deal with and I don't know what will become of Finor. I worry about him now. I know Tyr would want him to be cared for and I will always care for Finl. He knows I'm here for him forever and always.

I will miss my sweet friend. I will always have regrets that he didn't get to experience more of life. But Tyr was someone who grabbed life and strangled every bit out of it he could. His life was as large as he was.

I've run out of words. I love you Tyr. RIP.

Really just a new poem. I've been in Oregon since November 12 and will be here until November 22. I'm here hunting for a place to live as living in Southern California is an impossibility for me now; far too expensive. I'm not sure this is where I'll be going. I'm sort of on a fact-finding mission. But, on the drive up here, especially through central California's farmlands, the breadth of the drought the state is suffering was palpable. And disheartening. This is the poem that is the result of driving north on I-5.

Driving North on I-5

(Oregon)

A modern dustbowl –

signs asking:

“Does growing food mean

wasting water?”

as we fly past a

cutoff for Yosemite;

grapevines going rusty

in the autumn sun as

we pass Dos Amigos View Point.

The land is bone-dry,

dry as papyrus,

brittle as a forgotten soul.

By the time we pass

Crow's Landing

the sun is setting,

glancing off the paper-thin

limbs of desiccated trees.

As we miss our last chance

to turn toward Yosemite,

even I begin to flake

into peeled-back bark;

behind us,

all we see is dust.

What Does a California Girl Do When It Rains?

First thing, I get pretty excited. I love the rain and have missed it over the past few years. So, yesterday, while I was outside in my painting studio (a semi-enclosed patio) and it started to rain, I looked up sharply and smiled and told the dog: "That's rain. Remember rain?" He didn't have much to say about that but he did go frolic in the wet grass for a while.

The rain passed quickly, lasted only a few minutes, but it left me thinking and this is what resulted:

California Rain

You stab my sun-dried senses with Petrichor;

the perfume of swollen sand

and desert chaparral –

the free nature of your Hollywood landscape.

The breeze opens her arms

to your cooling touch,

alien fingers of moist love –

saturated need – and I,

I feel the brittle corners

of my petrified thoughts

wriggle in the mud at my feet.

That's really all I had to say about it! But, having poetry return to me, as it does in jerks and twists, made me think again about the idea I had to start a poetry blog. As I'm still pretty new to the blogging world, I was just wondering if any of you would be interested in reading and taking part in a poetry blog. It could encompass my own poetry and, in response, I would hope you'd share yours here, also. It could also cover poets we all love, poets we're just discovering. I'm anxious to have new poets introduced who I may not have come across but you have.

The other thought was a poetry Facebook page that would serve the same function.

So, what do you think? Leave your thoughts in the comments, please.

The Beginning of the First Ten Years

Ski racing, especially downhill, is a dangerous activity and there are many accidents. It would be really too bad to lose everything because of a crash.

 -- Hermann Maier,

Austrian Alpine Skiing Olympic Gold Medalist, 1998

I wasn't a ski racer, let alone an Olympic downhill level racer. I skied the pace I skied, relatively fast for an amateur skier who only got the opportunity to ski three or four times a year. The people I skied with could keep up with me, but rarely did. My Uncle Jack and I skied at about the same level which is why I always treasured his company -- the fact that he was a fun guy to be around helped, too.

Snow skiing was the family sport. Not just my parents' and siblings' sport but that of my aunt and uncle and cousin along with my mother's multitudinous aunts, uncles and cousins. It was like a tribal meeting whenever we'd make the big ski trips to Mammoth Mountain, California. And I was arguably the best skier out of everyone. I was about 8 when we began skiing in Big Bear, California. We all took lessons, we all liked the experience, except for my sister who really never took to it like everyone else and who soon was pregnant with her first child -- I'm 8 years younger than my sister and she married at 19. Even my  little nephew and niece were skiing from the time they could walk, on little "ski skates" hanging between someone's poles that we held horizontally so the kid could be between our skis. Even some of the family friends joined in. Skiing was just something we did, something we enjoyed.

In 1973, when I was 14, I was attending a small private school in Ojai, California. One spring, the entire school planned a trip to Mammoth for a week. I happened to be home visiting and the family and I were going to meet the school up there, take advantage of the timing and go on a trip. When I say "spring", I mean April-ish. The snow was usually okay to ski on until May or June back then -- you know, when we had predictable weather? I'm fuzzy about all of the particulars as both time and injury have clouded my memory. But this is what I recall.

As I've already written in my poem, "The Fall" (which is contained in the last few blog posts), it was a beautiful day the day my father, my brother-in-law (Wally) and I decided to take on the biggest challenge any of us had faced on that mountain: the very top of Mammoth, "The Cornice". This was a very steep run with a concave -- rather than a convex -- curve to it. In fact, you had to take a narrow trail down to get on to the run, almost having to jump a little from the narrow approach to the run itself.

Dad went down first and had just turned around to tell Wally and me not to follow him, that the run was too icy, when I -- standing on the narrow approach, ready to get to the run any second -- felt the snow just crumble beneath my down-hill, right, ski. And the world disappeared in a jumble of beautiful blue sky and hard, icy, slushy white. It was, I imagine, like tumbling in a clothes dryer. Round and round and round I went. My body hit the snow and bounced, hit the snow and slid, hit the snow and tumbled, hit the snow and cracked. The ski poles I had in each hand -- safety straps around my wrists -- poked me in the face, the eyes, my ribs. My skies, secured in those days by a safety strap around the ankle, hit me in the head, the back, the legs.

Through all this, my brain was rejecting what was happening. In fact, I have an odd memory of seeing my body falling from a higher vantage point, like I was standing on the top of the next run over looking down. Then, like a door closing, everything stopped. Even sounds seemed to have ceased. Then I heard voices telling me not to move, to lie still. People brought pieces of me down: my sunglasses that had fallen off, the shirt I'd had tied around my waist and other little paraphernalia  I'd had with me. So, there I lay, head downhill, on my stomach, arms and legs splayed, skies hanging off my boots and poles still hanging from my wrists.

Then Dad was there, frantic of course, and he told me, again, to lie still. But by then I'd done a quick check to see what hurt and nothing really did. I think I was pretty cold and numb and, most likely, in shock. So, after a while, I sat up. Dad unhooked my skies and poles and sat there with me for a while. Then, deciding I really was okay, I slowly got to my feet... and nearly collapsed. My stomach felt like a cannon ball had hit me in the gut. My head felt like it had been run over by elephants. My legs felt like they were everything but broken, as did my arms.

Dad had me sit down again and took my skies and stood them in the snow uphill from me, crossed in the universal sign of distress so that the ski patrol would know we needed help.

Unknown to us at the time, Wally -- who'd remained at the top of the run and had watched me fall -- had already sent the ski patrol but they'd gone by while I was standing up before Dad had put my skies up in the snow. So when a second ski patrol team came down the run, they stopped to help. I think they had to call for a sled and, while we waited, they asked me all kinds of questions, checked me over for broken bones, etc. And then packed me into the sled when it arrived. They wrapped me up and strapped me in, head downhill, and one of them took the front of the sled and another took the back of it and down we went.

Again, my memory is hazy but I remember snow in my face and my head hurting more and more, feeling like blood was rushing to it, which it probably was doing as the ski patrolmen had to negotiate some very steep runs to get me to the bottom. And it seemed to take a very long time, longer than it normally would take to get from the top of the mountain to the bottom. Twenty minutes? Thirty? I had no idea what kind of time passed.

My next memory is being in the ski patrol infirmary.

And that's about it for this time. It's important to know the beginning of the tale so that the rest of it will make more sense. It's a 40+ year story and I appreciate you sticking with me as it unveils itself here!

Guardian Angel

What is it called when a thing that was defined by necessity as "uncertain" changes its very nature to become redefined as "stable"? If I knew, I'd know how to title this post; as it is, I'm waiting until I finish to figure that out.

I ask that question because I've spent the majority of my life with a sword dangling over my head, almost literally. The accident I wrote of in "The Fall" left me with multiple complicated injuries that went undetected for many years, then went untreated for many more while a cadre of doctors from the four corners of the Continental United States poked, prodded, X-rayed and examined me and collectively threw their hands in the air about what, if anything, to do to help me.

Eventually, in 1984 when I was 25, I had cervical spine surgery to correct a herniation with complications I will never truly understand. This happened at Loma Linda University Hospital in Loma Linda, California (east of Los Angeles). Four years later, I had another cervical spine surgery at the same hospital. That surgery was botched but I wouldn't find that out for 18 years.

After Loma Linda, I went to USC University Hospital for Pain Management. When my symptoms seemed to indicate more of the extensive damage in my neck might need surgical attention (again), I was sent to the Neurosurgery Department at USC. There I found a wonderful doctor, Dr. Stillerman, who put off surgery, thinking it wasn't time to do more than keep me as stable as possible -- my collection of neck braces was impressive -- and see how I progressed. He was replaced by Dr. Samudrala who has turned out to be my guardian angel.

In 2004, I went in with my annual MRI for my annual visit with Dr. Samudrala and he looked at the new films and said I needed C-4/5 corrected as soon as possible, which turned out to be a week after that appointment, on my 45th birthday. Surgical techniques had changed over the years so this experience was vastly different (better/easier) than my 2nd surgery 18 years prior. Once I'd healed (this time, a plate was implanted so I had no neck braces), Dr. Samudrala told me he thought I'd need at least one more surgery in the near future. So I continued to be monitored by my Pain doctor and saw Dr. Samudrala as needed.

He soon moved on to Cedars-Sinai and I followed him there for annual check ins since he was the one doctor out of dozens I've seen who spoke to me honestly and simply as one person to another. He then moved to Glendale Adventist Hospital and I followed him there, too. So, two years ago -- in 2013 -- when the little finger and ring finger on my left hand went numb overnight, my first thought was "Oh, shit, it's my neck" and I immediately contacted Dr. Rever, my Pain doctor, who ordered a new MRI and, when she read that report, told me to go see Dr. Samudrala, which I did.

At that point, Dr. Samudrala was no longer doing complex surgery. He said he thought I needed both C-3/4 and C-6/7 worked on and that would be a long, hard, delicate surgery so he wanted me to go back to USC. Which I did. This was in August 2014. The doctor I saw at the USC Keck Spine Center sorta wasted a few months treating me as though my injury was new, ordered a CT scan and flat X-rays, then ordered an EMG (because my left arm from the elbow down was tingling/numb even though I had elbow surgery to supposedly correct that in early 2013). After all that, he said he wasn't comfortable operating because he didn't think he could do enough to significantly aid me in getting better. He sent me to UCLA.

After days and days of phone calls, I got an appointment but it turns out the UC system doesn't take my health insurance (I have individual Blue Shield and no one wants to take individual insurance) so I arranged to see someone at UC Irvine (they mislead me, telling me they did take my insurance but, as stated already, it turns out no UC hospital will take me). So, frustrated beyond belief, feeling helpless and aggravated and in pain and exhausted, I turned back to Dr. Samudrala for help.

He'd told me months before that, if necessary, he'd help me get in to Cedars-Sinai and it turns out they will take my insurance. But...

I had an appointment yesterday (April 9) at Dr. Samudrala's new private practice in Pasadena and the news was both really good and really bad.

Let me back up a moment. When I spoke to Dr. Samudrala on the phone after the visit to UC Irvine, he calmed me down with a few words of support and reassurance and told me to go see him. Two weeks after that conversation, which eased a lot of severe stress for me, came my appointment yesterday.

He looked at my test films (CT, MRI, X-ray) then came into the room, sat down near me, looked me in the eye and said, "Let's see what your reports say". These were the reports from USC and the test reports. So he read them sitting there with me. Then he looked at me and asked what my main symptom was and I said what I've told every doctor, "Pain". I have no obvious neurological symptoms: no paralysis, no weakness in my limbs, no obviously treatable issues that can be traced directly back to specific injured nerves, herniated discs or bone fragments.

He asked me to refresh his memory of the surgery that he did 10 years ago so I did and he said, "Now I'm remembering. Actually, I'm remembering the nightmare." The look he gave me spoke volumes. He told me he remembered opening me up and seeing a mess inside, that he probably should have cleaned out more bone but he was mainly concerned with correcting a rapidly moving forward bend to my spine that was impinging on the spinal canal at that time. So he did that, put in the plate and closed me up. That was a long enough surgery.

A few weeks later, when I returned for my first post-op visit with him at USC, he said he thought I'd need at least one more operation "by the time you're 40". As I said, I turned 45 on the day of surgery. He can't tell age very well I don't think.

He was pleased with my healing and, three months later, after spending all that time healing at my parents' house, Dr. Samudrala released me back into Dr. Rever's hands.

Back to yesterday. After reading all the reports and looking at all the films, speaking to me and listening to me, he said, "The reason no one wants to do any surgery is because it's too dangerous and no one wants to make you a quadriplegic.” He said that if where we were sitting was “1” and the moon was “10” on a scale of how dangerous surgery would be for me, I'm at about 7 ½ to 8, far too dangerous right now. And I agreed. So did my dad, who usually goes with me to these kinds of appointments just to be a 2^nd pair of ears.

So, while Dr. Samudrala scared me with the prospect of the danger of surgery, he reassured me that my neck is pretty stable right now. “You grow bones where you shouldn't be growing bones,” he told me. “The entire right side of your cervical spine has boney growths.”

He said I could go see one of 2 doctors at Cedars-Sinai but they won't do surgery on me, either. I see no point in putting myself through unnecessary doctors' visits, not to mention the drive from east of L.A. to Beverly Hills.

All of this was scaring the hell out of me, you understand, and I walked in to the appointment beyond stressed. The past two years have been their own kind of hell that no amount of description will truly describe.

I, of course, asked where this left me and he said it left me with him. He wants to see me again in 6 months. Then he did the most remarkable thing anyone has ever done for me. He'd been holding my hand throughout this discussion but he squeezed my hand and said: “I'm not going to leave you. I'll always be here for you.” I must have looked as struck dumb and as amazingly grateful as I felt because he said, “Does that make you feel better?” and I nodded and said, “You have no idea. You're going to make me cry.” He said it was okay to cry but I held off until I'd made the appointment for 6 months from now and Dad and I left the office. Once in the hallway, though I sorta collapsed against the wall and started to cry. I was overcome by his compassion, his honesty, his reassurance, his humanity not to mention the cancellation of the on-going, threatening near-certainty that I'd need a 4^th cervical spine surgery.

A weight that was becoming almost too heavy to bear lifted off of me yesterday and I've been in a bit of a mental muddle since.

My next step will be back with my Pain doctor now that we have a clear, realistic view of my physical situation. Dr. Samudrala said that now I need to treat my pain. I need to medicate myself, something I've been loathe to do for many years. I have a cocktail of pain-blocking meds but they only work so much. I've had prescriptions for narcotic-strength pain meds for many years but have rarely used them. I need to use them now. And I need to ease the hell off myself. I've had to be strong for nearly 35 years. It's hard to relax from that kind of hyper-vigilance.

It's going to take some experimenting and a lot of work on my part to learn how to be this new evolution of myself, this person who is truly a chronic pain patient. I've known that's described me for many years but I never really accepted what that means and it's going to take a little while for me to internalize, understand, and accept this new designation. But I will work it into my world view. It may take some time but I'll get there.

This post is by way of me expressing just how important Dr. Samudrala has been -- and continues to be -- to me. This is why I tell people that if they're uncomfortable with a doctor or what a doctor says doesn't ring true, then that isn't your doctor. Keep looking for the right person who fits your needs. And I think I just found the title of this post.