Pain is Tedious
My neck still is hurting a lot. Spiking with pain when I attempt to turn my head very far. It feels like it's wrapping around from the back to throttle my jaw and head.
I also am having allergy stuff; sneezing like heck. Part of my headache is from this, but the neck pain makes it all worse. The sneezing also messes with my neck, so it's become something of a pain loop.
It is boring and make being in the world harder. That's my starting starter most days from my lower back issues, whenever something else significantly hurts it always feels like adding insult to injury.
Ursa is sweet. Dinner turned out good and was simple. Mixed media paper notebooks showed up today. Three Valentine's Cake is happening Saturday.
Coup Hangover
A student told me how grateful she was that I taught today. Others shared her sentiment, saying that my class brings some balance and normalcy during these riotous, pandemic days.
It feels so good to know that I'm helping people, but it's also fatiguing to create this for people.
It's estimated that 4000 people died from COVID today.
Trump is still in office despite having provoked a coup attempt.
I lightly bumped my left hip at the market, but I hit a tender point! My body reacted with intense pain that's still lingering, several hours and ibuprofen later. Thankfully I have PT tomorrow, so that tender point will get attention.
I picked up fresh rose water while at the market so I'll be experimenting with my coup cocktail again soon.
Irritation
I’m tired and my pain has been higher, tonight everything feels too irritating to do for more than a moment. Reading. Standing. Playing my game.
Usually I can push through being tired and in pain and do the dishes. Folding laundry is a soothing task usually, good to ground me at bedtime. Tonight I want to throw things, only it’s too much effort.
My pain has slowly improved, but tonight I’m exhausted by it and feel pathetic, mostly worthless. I know logically this isn’t true, but increased physical pain exacerbates mental pain and hater I am tonight.
Tomorrow I’m teaching art online again despite feeling uncertain.
When
I shared a question posed by James Baldwin in 1989, "You always told me ‘It takes time.’ It’s taken my father’s time, my mother’s time, my uncle’s time, my brothers’ and my sisters’ time. How much time do you want for your progress?"
And people ask why the protests are angry.
My back pain has been high the past two days. I called my PT and made an appointment. There's a list of pandemic protocols to follow, not surprising at all.
My pain slowing me down didn't help with my mood. I get so frustrated by being unable to get more done. Feeling like I'm getting caught up on the house helped me with the anxiety about everything.
Ticking Away the Moments
I look back at this blog and realize that two months have whooshed on by. One of those weeks was spent celebrating Mom's 70th birthday in on the Big Island of Hawai'i, which also felt like it went by far too quickly.
It was a bittersweet trip. Mom was delighted to be there, but the rigors of travel exhausted her. Her blood levels fell, in fact we spent the morning at the Kaiser Infusion Center having a transfusion of blood and platelets. The flight home was arduous, with her saying she was hallucinating and constantly fighting with me when I'd remind her that her bag needed to stay under the seat, that she needed to not hold her cane until the plane was on the ground, etc. I feel like we'll never take a big trip with her again. CK thinks maybe we might, but if we're able to bear the cost of first class tickets. Mom's always wanted to go to EPCOT and I'd really hoped she might be able to do some of these things.
Some weeks are better for Mom, but in general she seems afraid of the world and too content to just while away the hours listening to books on tape or watching shows on the Lifetime channel. To me these all seem to be the same story line of families facing challenge that they greet with Faith and are therefore led to a happy ending. Improbable and so narrow, I don't seem my life reflected in these stories at all, that I find them grating. I worry that this consumption of brain-candy stories to be worrisome. When I urge some engagement with her peers, attending some activities at a local senior center, she professes too great a fear of venturing into any group.
Looking back, I think Mom's always had some level of social anxiety and I think she's sabotaged a lot of connections. When you add to that her deteriorating eyesight and the legacy of the emotional and financial abuse she suffered at the hands of her husband's family, I can connect it all to this fear of joining any kind of group. That said, it is hard to watch her passive consumption of mindless entertainment, ticking away the moments that make up a dull day.
When I was younger she at least tried some new things, particularly arts and crafts. She developed some skill, and enjoyed tole-painting, sewing things, some quilting, and a little machine embroidery. All pursuits that the pain in her hands and the failing eyes have taken from her life. I cannot say the same for reading materials and shows, I always remember her with a stack of Harlequin Romance novels and a fondness for movies like An Officer and a Gentleman and Ice Castles.
She resents my prodding, it makes her feel bad about herself. She hurts, profoundly. Her health has never really been well in my lifetime. It is hard to greet pain and keep going, I know this from personal experience. It takes a lot of will to try and keep moving with, and through the pain. I especially know that when the pain increases the fatigue it brings make it even more difficult to stay engaged and moving, however, I know at those times that it vitally important to keep trying.
And yet, she suffers profoundly. Physically, emotionally, mentally, she suffers. Is it wrong for her to hope to ease into death and go to the heaven she imagines in her mind? Is that so wrong for her to want that? Is it just that Dylan Thomas made too deep and lasting an impression on my young mind that I recoil at the thought of pursing, of longing for an easy death?
The other night I shared with CK that I felt like she's just giving up and that it hurts. I felt like both my biological father and my step-dad both just turned toward pleasure, pleasure that was surely killing them, and refused to do the hard work to stay alive and present, part of my life. It hurts a lot to feel like my Mom's doing the same thing.
Watching sunset at Kealakekua Bay - Hawaii - March 2013
Bang!
This is what $550 in Suburu bumper damage looks like
On the way home a month ago, in one of those terrible evening commutes, I was rear-ended.
The Bang! surprised me more than anything at first. I noticed the affect on my body within minutes, which increased for days, staying at a 6/7 level* for a few more days, and leveling down to the 4/5 range.
I was lucky. Wretched traffic means the other driver was going no more than 20 miles per hour.
His 1998 Suburu Forester, white, hit my 1998 Suburu Outback, also white. Very evenly matched bumpers. He was a little uphill and my insurance recommends that his insurance pay to have my bumper replaced.
It did not make my back any worse, permanently, but the past month has been a big old less in patience. My general pain level has been in the 4/5 range, which is the point at which the pain becomes fatiguing I've been reminded. A 3 and I'm pretty much golden, and have been enjoying being that way for over a year!
metta. metta. metta.
My physical therapist assessed things and indicated that I had no movement in my spine or ribs for a few weeks. I was also directly by my physician to stay off my shoulders for a few weeks (things a yogini hears!) and to not teach for at least a few weeks.
metta. metta. metta.
Things are starting to move again my physical therapist said tonight. I've taught a handful of slower classes with no weight bearing on the arms. Even being on hands-and-knees is quickly fatiguing and painful. My students don't seem to mind having somewhat more restorative classes and teaching is good for my brain.
Next week is OSCON and I've finally bought a small, rolling bag to move my laptop, hoodie, snacks & water around. Although I have a very light laptop, even carrying half the weight of it makes me ache. I'm trying to see it as a tool and not a defeat.
metta. metta. metta.
It is so frustrating to have a relapse, to be reminded just how delicate a balance my pain management is. Yep, a big opportunity for all kinds of practice.
metta. metta. metta.
I am also profoundly grateful for many things. My car is sturdy, well-maintained, and in need of only cosmetic repairs. My friends who continue to help me pick up and move things. My encouraging wife (always). My flexible job that accommodates a rush of appointments for bodywork to recover more rapidly. That I have three highly skilled bodywork professionals who care for me and who have found many additional appointments for me, they've also just billed insurance directly so I don't have to fund all these unplanned appointments.
*Levels of pain: Commonly used in the treatment of people with chronic pain. You are asked to rate your pain on a scale of 0 (no pain) to 10 (worst pain ever). It helps gauge things and quantify "pain".
When I was first diagnosed my pain was in the 8 range often, with severe spasms that would literally take my breath away and knock me down (10s). It leveled down to the 7/8 range, which was like living in a grey fog of "ouch". By the time it hit 5/6 I was grateful.
The past 18 months or so, with the assistance of a lot of body work and yoga, the pain hovers in the 3/4 range with some days in a 2/3 range. These is when I feel like I'm "normal" again. It is pretty easy to become attached to less pain!
Dust
I have been on a bit of a cleaning frenzy since yesterday. The house had become hugely chaotic with stuff not put away. It was just a mess, truly, and bugging both of us. Merely moving some things down to the basement where they belong (yoga props I'd loaned to a Dharma sister) and getting some things taken to our respective offices made a lot of difference. Today I've vacuumed, dusted, sorted, and organized some. That and laundry - I'm kind of tired, but it feels good to have things cleaner.
Amidst all of that frenzy, while dusting, my cane caught my eye. It is mixed in with rolled up yoga mats, hiking poles, and an old paper umbrella. The handle of it was covered in a rather thick layer of dust.
As I cleaned it off I was struck at how long it has been since I've used it. From 2000 until well into 2004 I would use it occasionally when the pain and weakness in my hips would necessitate the extra assist. I purchased a cool, lightweight one with the ability to be broken down like a tent pole. People commented on it a lot for the coolness factor and they were mostly too polite to comment on a woman in her 30s using one. I generally resented the hell out of it but admitted that I really needed it.
I'm not exactly sure when I moved my cane into the cluster of stuff. Sometime in the past couple of years it took up residence with the hiking poles, which feel like an accomplishment instead of an accommodation. My third yoga mat. CK's mat. The paper umbrella I've had for years; I've been pondering how to repair a tear in it and re-purpose into an art project. The cane had an impressive amount of dust on it.
I'm also not entirely sure when I stopped using it, even very occasionally. At some point it just became a thing in my house that I never interacted with. I didn't need it, so I never went looking for it.
What I am aware of is the meaning of that dusty handle. The lack of use, the accumulation of dust as the cane sits next to my scratched up hiking poles is a testament to my Yoga practice and to the hundreds I've spent on one form of therapy, including body work, or the other. Amusingly enough the dust is a rather powerful indicator of progress.
Yeah, there's still a truly mechanical failure I deal with. It does affect me, but now it is just another part of my physical practice. Tomorrow I'll probably really feel all the cleaning and organizing I've been doing the past couple of days. I'll most likely be moving a little slower, a little more cautiously. I might wake up with a bit of a groan.
Even still, I won't need that cane.
Holding
I've attended several yoga classes in the past few weeks, about two a week. It has been a real dive back into this level of effort as the classes are much more intermediate than the ones I'd been teaching at Dishman and they push me more than I'll push myself at home usually. Tonight's really wore me out, but I didn't feel any of the nausea I used to.
The acupuncture has really shook things up, out, and shifted things around. The chronic trigger points in my hips are gone. If they get triggered again, I know I can make an appointment with JS and get that energy out of there! I am still weak in that area, but pushing into that weakness doesn't cause me intense pain.
What I'm aware of now, after IW worked on me at the end of last month, was the tightness in my side. I think of myself as very open, very flexible in my side body and able to breathe very deeply. And yet this are is tight, bound up.
I hold my breath a lot. Yoga has really made we aware of it, as has meditation. When I'm anxious, I hold my breath. Angry, hold the breath. About to cry, very tightly held in breath. I learned this as a child as a method of sometimes holding in emotions that would get me punished or out of some wish to become invisible. What kind of yucky energy is caught there in that holding of the breath?!
I saw the pain the hips as being a black/gray sludgy, thick energy that sat over searing hot, orange and red energy. Bringing awareness to my sides I can sense some of that sludgy stuff there too. Less than the hips, but similar.
The horrible shame that arises I'm realizing is that dangerous, terrifying, burning angry energy below the sludge. Not entirely sure how to work with it yet. I'm trying the practice of loving-kindness while looking at myself in the mirror. I've also started visualizing myself as a young child, sitting closely and lovingly with that child-me, and telling her over and over that she is not to blame, that she doesn't need to carry that shame anymore.
Might just about be time for sanzen again. I felt so overloaded by the sesshin last year that I haven't really gone. Just seemed like I had so much to work with in my practice that I really didn't need, didn't feel I could handle any more input. I also find it really hard to go out on Sunday night. Not teaching Sundays means I'm going to devote at least one Sunday a month to attending service at Great Vow and having sanzen.
What Causes the Pain?
I get asked about my physical pain a lot. Rather than repeat over and over, I'll post a full summary here so it is easy for me to refer to.
My chronic pain started one morning in late December 1999. I woke up and couldn't move without wanting to scream, cry or both. I had experienced a major muscle spasm in my lower back several years earlier so I didn't panic. Unlike that time I didn't get better, nothing was relieving the pain and I started to feel rather anxious about it. In 2000 my doctor sent me in for an MRI and then sent me along to a neurosurgeon to have the results explained to me. On the films he pointed out how my first three lower vertebral discs were bulging out (S1/L5, L5/L4, L4/L3). The rather hazy diagnosis for all of this was Degenerative Disc Disease.
I was given prescriptions for vicodan and very high doses of ibuprofen, sent to a physical therapist, and to water therapy as well. The physical therapists arranged for me to have a TENS unit. It didn't really get better, the physical therapists, who were more accustomed to dealing with injury as opposed to chronic condition, grew frustrated with my lack of "progress".
The first few years were struggle to learn how to adjust to being in pain all of the time. Really, ALL the time. No break in the pain, just variation on how bad it is. I have come to describe it to people as "noise". There is always the noise-information of my pain. Always. I am in pain if I am awake or asleep. The only variation is if the volume is at 3 (mildly, but constantly, irritating) or 10 (worst pain ever). Since 1999 my pain level has never been at 0 (no pain).
The pain medications that were prescribed generally made me feel worse. The ibuprofen upset my stomach. It turns out that I am allergic to opiates, they not only caused stomach upset (a common complaint) but I would break out in hives, sometimes waking up with huge scrapes all over my body when I'd start scratching in my sleep. To take even half a dose of pain killer I must take Benedryl as well.
Every day was exhausting those first years. It was all I could do to wake up and drag myself to work. Thankfully I could telecommute some days when I was too exhausted to go into the office. In the evenings I would just collapse into bed. It was as if my life came to a standstill. I would work and collapse, spending the entire weekend resting enough to start all over again.
By 2002 I was exhausted physically and emotionally. What strength I had once had from regular water exercise, walking and lap swimming was gone. I had very little flexibility left at all. I wasn't a candidate for surgery because of where the discs where degenerating. There was nothing to be done but suggest body work, more pills, and some kind of exercise.
Having first learned to swim when I was still a baby I've always felt at home in the water. While unemployed in 2002 I started to go to water exercise classes again. First I went to a class aimed at slow movements and low intensity. It felt so good to be doing something with my body and I started to get some flexibility and strength back. After a few months of this class I moved into a regular class, then back to some lap swimming, and eventually settling into a deep water exercise class where I would experience zero impact in my joints, especially my hips and spine where the pain was worst.
In 2003 I started studying yoga. It was incredibly hard, I had to stop and rest a lot regardless of what the other students were doing. I could tell it made a difference though so I kept with it even though it sometimes really hurt. Even more than water exercise, yoga let me help treat and work with my own pain, which was very powerful. I'd also lost around 90 pounds by this time. I felt like I had a lot more energy even though the pain was still pretty intense.
Another MRI in late 2004 revealed good and bad news. The third disc (L4/L3) was fine. There was no mention of anything unusual about it at all! The bad news was my first vertebral disk, between the sacrum and the first lumbar vertebra. This disc had ruptured sideways (which bit unusual). The middle disc (L5/L4) was still bulging.
The ruptured disc causes nerve compression (sciatic nerve especially) on both sides of my legs; the left particularly so. Quite often there is a very low level of spasm that is happening most of the time in my lower back and hips. Sitting, particularly with my legs down (how one normally sits in a chair), aggravates the pain.
Over the past 9 years I've become very adept at managing the pain. A combination of body work (massage, physical, and craniosacral therapies), yoga, weight loss, rest, exercise, and water/heat therapy I use has actually lowered the level of pain I'm in over all. When I interrupt those things my pain increases. Occasionally that increase appears as an overwhelming spike of "noise" that sends me to rest more and take a muscle relaxant. Sometimes the only interruption comes from something like stumbling over my own feet or sneezing without holding onto something or sitting down first.
Most of the time people do not know I'm in pain. It is an "invisible" condition that sometimes causes people to question things like turning down invitations because I need rest. Eventually, if someone spends enough time around me, they will see evidence of what I work with. Sometimes it is only that they catch me on days when I'm very tired and am limping or dragging my left leg a little. Once in a while I get caught off guard by much more major muscle spasms and am barely able to breath much less walk.
It is such a small thing really, but our bodies are so carefully, precisely assembled and nerves are so sensitive that even being pressed into a few millimeters causes significant response. My spine is a constant reminder to me of how even a small change causes a much larger impact. It is also a reminder that pain is merely information our body gives us and I am not defined by my pain.
Spasm Storm
Frustrating day at work. Primary production tool server was having problems, kind of. Not so critical that we called for a mid-day outage, but impacting enough things to annoy my most demanding client team. I spent much of the day responding to their complaints about having to use a work around and wanting to escalate, regardless of this impacting several other teams. Then the test server for our enterprise reports environment was stuck.
I noticed after having a good sized, delicious lunch of last night's leftovers (Anasazi beans, mango salsa, rice/barley/radish seed steamed, and chard & beet greens) that I was craving sweets. In between the client irritation and the tedium of defining all the database fields & tables my brain was stuck on, "cookie, cookie, cookie.... give us a cookie..."
No cookie. I was mindful of all the emotions pushing me towards sweet gratification, offered loving-kindness, got about my day the best I could, and looked forward to zazen. My reward was to leave a little earlier and join CK. I had an iced coffee and a couple of bites of a blueberry muffin and felt pretty good.
Had a great group meeting at the Dharma center. We shared a potluck, light meal and talked about practice. I even talked briefly about being wrapped up in working with how I felt about my body, how having the photography session really triggered some painful stuff. I didn't explode...
Well, at least I didn't explode until I stood up to put away dishes and gather up things for zazen.
The cramps started in my left hamstring and my right foot. I dropped back onto the floor in the center of the room trying to calm my legs down. Both legs were cramped and in spasm from hip to toe and my feet pulling tightly, curling up involuntarily. The right one along the front of the leg, the left along the back and side. Breath-stealing agony with an audience as more and more people arrived.
Each time I'd try to stand up to lengthen my legs the spasms and cramps would intensify. I eventually gave up and inched myself to a sofa, lay on the ground and put my legs up on the cushions. This began to help although the left upper leg remained in spasm. I felt myself crying.
"I hate my body." I said from the floor to a concerned Sangha member checking in on me.
Right in that moment I meant it. Even if for a second. I felt like my body was one giant, muscular panic attack and crying, lying helpless on the floor with people around me added a layer of emotional vulnerability that only made things worse.
Ultimately we went home. CK still isn't feeling great, even though she is improving slowly with the antibiotics, so it was good for her to come home. There was no way I could sit zazen, something that was pretty apparent to everyone. Hogen made a suggestion regarding levels of trace minerals, something he'd come started asking me about when he spotted me in distress, and had even gone to get his bag to see if he had anything to give me immediately. He saw us out and wished us well.
I'd really been looking forward to zazen and the Dharma talk tonight. CK helped me to the car as I cried and limped. I felt the hurt 4-year-old inside of me wailing at having been denied cookies earlier and now having her "normal" Thursday night taken away. I also felt tremendous fear at being "stuck" like this, with CK having to help me when she is so young and healthy.
I keep reminding myself that I haven't been shutdown with muscle spasms like that in a couple of years. There was a time when this was a weekly, daily thing. So I have improved. It is still scary though to have that happen. I feel pretty helpless when it does, overloaded by the barrage of information.
Most days I feel like I have some say in my pain, how I function with it. I had even commented earlier in the evening as we shared dinner how yoga had helped me be comfortable with the inside of my body. Even though my body experiences some level of constant, chronic pain, I'm able to feel comfortable inside it. The massive storm of muscle spasms rob me of even that small feeling of comfort.
Everything changes, especially our feelings of comfort.
I am trying not to hate my body. I am working on moving out of the shame I feel towards it, especially the outside of it. I am trying not to feel unbalanced by this overload of pain information tonight.
Some Dharma gates we must crawl through.