Grief: The Photograph

(click to enlarge)

This photo, when I first saw it, practically stopped my heart. I almost wept. The world fell silent. I was in a place, in my head, that day, when I was exhausted from headaches, tired of the world, tired of everything. Every heavy thing I carried in my head and in my heart were suddenly summed in that one quiet photograph. I've never forgotten it and look at it from time to time. It says so much to me, at many different levels, when I stop and really look at it, look into it. When I stop and just be still.

There are all kinds of grief. This is the grief of human loss, the infinite heaviness of having lost a loved one. I am lucky, so far, that I haven't experienced the loss of someone precious, yet. But I almost lost my mother once, and I haven't been the same since. I can't seem to love her enough. There are no words to describe how much and how long I will love her. And for a few brief hours that day, I faced the terror of her loss. I am also the kind of person who worries about that sort of thing, but it's good. It makes me savour little things that people don't even know I notice. It makes me quietly and loudly celebrate them. But it is never enough, is it? Only forever would be enough.

And sometimes I look at this photo and just see a person who is spent. Sometimes I feel that way too. Chronic pain does that to you: steals the wind from under your wings until they are too heavy to bear.

But mostly it makes me appreciate all that I have, all that I am capable of feeling, the depths and the summits.

This is the work of Pamela Williams, a Toronto photographer. I met her at an art fair in Toronto and had a long conversation with her. She signed a book for me. Her work is troubling but peaceful. She inspired me. Finally I started a photography series of my own. I've been shooting graves, visiting graveyards. It sounds morbid, but it isn't. They are the most quiet places.

In the future I will post my photos on a new blog. But that may be a while, so here is my muse, for all the world to see.

What saith My Neurologist....

Sorry for not posting for a week, but I got distracted by life (you know, the one none of us is living).

Here's a brief update on what my neurologist and I discussed last week. This is my 3rd visit in 8 months in our effort to curb my chronic tension-type headaches.

* Elavil is beginning to work. I'm now at 50mg per night and keeping a better sleep schedule, trying ever-so-hard to get 8-9h per night. Since May, my headaches have subsided a bit and I now have zero's on my daily diary for the first time in years. I usually don't get a full day of zero's...just zero for an afternoon, for example, or an evening. But I'll take zero's where I can get them. Since I'm still having flare-up days, days when I have brutal head pain, we've decided to raise my dosage to 60mg per night, but the sedating effects are becoming difficult to manage. I don't know how I will tolerate any more sedation. I'm already taking my nightly dose early in the evening and find it hard to wake in the morning.

* My sleep schedule needs to be rigidly maintained. It seems to help the headaches a little, although there are nights when I get lots of sleep but still wake with and have bad headache during the day. Even after weeks of a rigid sleep schedule, the headaches have remitted a bit but are still present and there are days I still feel wretched. So sleep isn't the only tool I have, but it does seem to help a little. Getting regular sleep is easier said than done. I can go to bed early, but I still have trouble falling asleep, and often wake in the night. Then, it's impossible to wake up in the morning. So sleep is complex for me, and often not refreshing, and not something that's perfectly achievable just by going to bed at 10 o'clock.

* He believes I have a migraine component atop the chronic tension headache. We weren't sure as I don't meet the clinical migraine diagnosis...no photophobia, no nausea, typically no one-sidedness, etc. My pain is regular and debilitating and often severe but doesn't seem to be full-blown Please-God-kill-me migraine. However, the Maxalt trial resulted in some relief. And also, I've experienced visual auras, the last on March 18th. After the auras, I have a stabbing pain over my right eye. So he said "well, it looks like you have a little migraine in you" and is trying me on another triptan, but only after we see if the Elavil works at higher dosages.

* The facial numbness didn't concern him. I, naturally, was terrified that I had a massive carnivorous tumor growing in my neck, pressing on my trigeminal nerve. He said no, not with that pattern. I have facial numbness, starting a couple of weeks ago, that goes around my hairline, about an inch from my hairline all along the top of my forehead and down the sides of my face to the earlobes. He did the pin-prick test to isolate the numbness. He said that part of the face is ennervated by the opthalmic branch of the trigeminal nerve, but if there were any problem with that it would not produce this area of numbness and neglect others. So he said he didn't think of anything it could be. He reviewed my MRI from last September, which was normal, and then said "can you live with it?" Since it is mild numbness (and I am not dying) I said "yes" and was almost happy to have it (since it means I am not dying or getting MS). He said that he often hears headache patients complain of vague facial numbness that they can't find a reason for. So he wasn't concerned. It is still there, and irritates me when I touch my face and it feels like I have dental freezing. But I am getting used to it. It irks me, but he's the expert and he didn't seem phased by it.

* The mild ataxia (unsteadiness, staggery feelings) is probably from the Elavil. I discussed with him my father's health. Dad has a degenerative cerebellar condition that also causes ataxia and it isn't clear if his is hereditary or sporadic. Anyway, he said that my last MRI was reviewed with Dad's condition in mind and there were no problems observed with my cerebellum or brain stem, etc. Also, my ataxia occurs in the morning, when I wake, and feel unsteady and drugged out of my tree. He thinks it's the Elavil making me dopey, physically and mentally sedated. Usually it passes as the day progresses. He also said that any cerebellar degeneration would be progressive, not intermittent like mine has been. So he told me not to worry.

* Sleep: I explained that I don't seem to get refreshing sleep. I could sleep 14h like a teenager. It's impossible to wake up. I don't have apnea nor restless leg syndrome nor insomnia so he doesn't think I have a true sleep problem but didn't have much to say on the subject. But he did say that Elavil, even if it makes you sleepy, does affect your sleep cycle, so it isn't the "same quality of sleep" as normal sleep. Plus, the need to keep sleeping is probably just the sedation. He didn't offer much more on this front, and I would still like to go to a sleep clinic. I may need to discuss this with my GP. I often wake with a bad headache, and the quality of the head pain seems to depend on where I wake in my sleep cycle. On the mornings when I am most exhausted and find it most difficult to wake, I seem to be in a very deep sleep and have a bad headache. On the mornings I wake up more easily, I don't have a headache, so the head pain seems to be tied more to where I wake up in my sleep cycle rather than to hours of sleep. So sleep+headache is infinitely complex and not something that I can control simply by MORE sleep.

* Neck and shoulder pain: I have chronic painful neck and shoulder tension. My traps feel like there are solid steel tennis balls inside them. My neck feels like it is made out of aching steel rods. I am stiff and sore all the time. Neck/shoulder tension are accompanying features of tension-type headache. Neck and back pain can be as troublesome as the headache itself. But the miraculous thing is that since May (when the headaches began remitting a bit), the neck/shoulder tension disappeared completely for about 4-6 weeks. This is the first time in 9 years my neck didn't ache constantly. The headaches left, or remitted, and so did the neck pain. So I told him that all the physio and neck exercises and all that crap I've done for years is probably useless, in my humble opinion, because there is NOTHING WRONG WITH MY NECK. I agree with the neurologists who think that neck/shoulder pain is simply an extra-cranial manifestation of the headache. And then the last week I haven't sleep well and been busy and all sorts of other triggers and the head pain is back with a vengeance, and guess what...so is the neck and shoulder pain. So he thought that was amusing since headache neurologists are always arguing and undecided about whether tension-type headache arises from the head or the neck muscles. So if I didn't do the insidious exercises and physio and dry needling he prescribed, would he be offended? He said no, he liked my theory, but he still thinks good core neck stability is important blah blah blah....

That's about it. It was a short and sweet visit. I seem to be getting some relief. Or not. I have had remissions before, but I hope something sticks this time, something magical sticks and I am de-sensitized to my triggers and my body learns, thanks to 60plus hours of sleep a week and plenty of Elavil, that it is okay not to hurt all the time.

Headache Neurologist: Visit #3

Today I'm seeing my neurologist for the 3rd time since November. He sees me every 3-4 months to follow the progress of headaches and medications. I will post some notes from our discussion soon.

Facial Numbness

Another health problem to add to my "I feel like crap" list: facial numbness

Since Monday night, I've been experiencing numbness on my forehead, mostly around the hair line. Yesterday at work, the numbness went from my hairline across my whole forehead and down the sides of my head around my ears. My ears felt normal, but it even seemed to extend into the area below and behind my ears. My tongue felt vaguely numb. The forehead numbness has persisted since then. It's mild numbness. I can still feel sharp and cold, etc. but it kind of feels like when you get freezing at the densist and the freezing starts to come out. My skin feels fleshy and thick to my fingers, since my fingers can feel but my skin doesn't feel as sensitive. Very surreal and very troubling.

The numbness hasn't gotten worse, and it isn't one-sided. I don't have any other complaints, other than feeling vaguely spaced-out and having bad headaches the past few days. So I know it isn't a stroke. It seems content to sit there and be numb. It's obviously some numbness in one of the branches of the trigeminal nerve, that enervates the face, but why?

I'm seeing my GP on Friday to get refills of my nasal spray and birth control pill. Then on Tuesday I see my neurologist for my regular 4-month visit. I think he'll be interested and likely perplexed by the new symptoms. The balance/unsteadiness thing comes and goes, but now...a numb face. Very scary. He will probably send me for another MRI, but the last was only 9 months ago. Can things change so quick?

Makes one think of MS and all those scary neuro diseases, which would be a sick coincidence after 9 years of stand-alone headaches and neurology visits. A few years ago, in 1998 I had a whole series of weird neurological complaints. The headaches had been around a couple of years, then I had some awful bladder problems (urgency, severe frequency) which had no urological basis (after about 400 tests), and then various problems like muscle weakness, pins and needles in my hands and feet, numbness in my lips, etc. They did every imaginable test at the time but found no problem. They chalked it up to stress and anxiety over the headaches and bladder problems (which was later differentially diagnosed as interstitial cystitis, a condition that destroys the bladder wall). Eventually the neuro complaints went away and the bladder condition was treated with some experimental drugs that re-built my bladder walls.

So I'm not as terrified as I was last time these things happened, but still it's troubling.

But what's worse is that I don't want to be self-absorbed right now. My poor dear David has just been diagnosed with shingles! Shingles is the herpes zoster virus, an adult version of chickenpox. The virus sits dormant in your nerve cells after having chickenpox as a child, only to re-emerge as painful blisters as an adult. David had 2 previous episodes over the last few years, so this is his 3rd bout. He has swollen, painful blisters on his forehead that cause nerve pain in his face and ear and the anti-viral meds are making him tired. His head is aching and he gets shooting nerve pain that must be brutal. Since the immune system fights the virus, he also feels achey and flu-like.

So he needs some love and support right now, not a girlfriend with a numb head. Poor David. He gives so much and takes so little, so I feel rotten even mentioning my numb face when his forehead is paining and his head is aching. And his blisters look like they want to burst and ooze.

We make a fine pair.

Anyway, hopefully his blisters will begin to heal up since he caught it early this time, and he won't be down for weeks, as can happen to some. And I hope my neurologist says my numbness is nothing. Instead, I'm afraid he'll look worried and sign me up for several dozen tests. Then again, when stuff like this happens, you just want to know what's wrong.

I've read that numbness and such can accompany migraine, but who knows/ Let's hope that's all it is.

I'm a Zombie on Elavil. And you?

Has anyone else experienced a perpetual zombie-like stupor while taking Elavil (amitriptyline) or similar drugs like nortriptyline (Pamelor in the US)? How about un-steadiness? Feeling un-balanced?

I've been taking 50mg Elavil per night, religiously, for about 6-8 weeks now, having incrementally increased my dosage from 10mg over the past 4 months until my headaches came under some sort of *control* (I use that term loosely). For the past few weeks, I've actually had some headache-free days, or headache-free segments each day. This, I hope, is due to the elavil plus more sleep.

However, I've noticed I feel drugged-out and unbalanced much of the time. I'm experiencing the following:
1. Waking the Dead: it's impossible to wake up in the morning, even after taking my drugs at 7-8pm the night before. My alarm rings for a full-hour some mornings. It's like waking the dead.
2. Walking the Dead: once vertical, I still feel like my body is asleep - physically sluggish and lethargic, and mentally un-alert. This lasts for hours, this S L O W motion ride, sometimes until noon.
3. Sleepy: I feel very sleepy A L L the time. I yawn a lot. I could curl up under my desk and fall asleep at any time.
4. The Big One: I feel unbalanced, unsteady, and uncoordinated (especially in the morning). This isn't dizziness (no visual changes), but just notice that my body, my movements are unsteady. I have to be careful I don't fall in the shower, and find myself bumping into walls, my vanity, etc. I have to be very careful getting ready for work, continually conscious of steadying myself.
5. Sometimes the un-balanced, un-steady feeling lasts all day. I'm consciously aware of steadying myself and moving carefully, with intention, being careful not to stumble on the train platform, that kind of thing.
6. I've had these feelings both with and without headache being present.
7. This has been going on for 2 weeks.

Basically, this drug makes me catatonic. That, or the unsteadiness is (i) a vestibular effect of migraine (which is new) or (ii) I'm developing MS or Parkinson's or some other bloody neurological disease.

Any way you slice it, it isn't pretty. It's also distressing.

So here are my questions for you:

1. Have you experienced un-steadiness and feeling un-balanced while taking Elavil?
2. Have you experienced un-steadiness or feeling un-balanced with or without the presence of headache?
3. What's the highest dosage of Elavil you've taken for an extended period? Did it help control your headaches?

Thanks!

Think About This

I was reflecting the other day about how self-conscious I used to be in my teens and 20's. By self-conscious, I don't mean unsure or afraid or any of that kind of thing. What I mean is more aesthetic self-consciousness, the "how other people see me" self-consciousness.

I used to want the best of everything and everything I did and said needed to reflect what a scholarly and refined person I was. Kind of like all those yuppie couples who surround themselves with only the finest things. Every item they possess must reflect how utterly cultured and rare they are. A Wal-mart kitchen knife won't do. It must be an exclusive Laguiole knife made by an ancient French cutler (okay, so I still want a Laguiole). Cutting boards must be endangered rain-forest wood and hand-hewn. They write with Mont-Blanc pens (or whatever breed is better), have the highest tech toys, the latest PDA, the latest flattest television (unless they're too cultivated to own a TV). All-Clad pots and pans. Copper-bottomed things that need to be hand-polished. They don't have regular mugs...they have fine pottery, made from Dead Sea clay. They own shares in a Tibetan goat (for the cheese!). Bed linens must be the highest thread-count imaginable. Furniture should be hand-built, preferably by blind carpenter monks. Clothing needs to be expensive, and obsessively brand-conscious but without being conspicuous. If you buy yourself a new wallet, it needs to be a calfskin Kate Spade, not one of those generic brands.

Now many of these things really do amount to personal taste, but taste can be painfully societally-driven when you're young. I always knew what I liked and had impeccable taste (or so I thought) as a girl and a young woman, but I was also self-consciously aware of what "the best" version was. I aspired to it. It would reflect how refined I am. And for me, what I liked was what was rare and sacred and not cheap and commercial. I always knew the right brand names for everything. The best cognac...Hennessy...over a warming candle. The best wine...preferably something dusty and French with a Grand Cru appelation...Pomerol, Medoc, St.Emilion, bottled at the chateau! Hurrah! I once knew the best vintages. I was aware of the best books and read them all... "The Alchemist" and "The Prophet" and all that pre-Robin Sharma stuff. I listened to classical music or to something obscure and genius. I strove to perfection. I ran and worked out and dieted. I died inside.

Another place of severe self-consciousness was in writing. Looking over my old journals and prose and poems, I see a horribly burdened young woman who was struggling so hard to show the world how special she was, what vast deep thoughts she had, how rich her interior life was. There was a pained self-consciousness to my poems, with over-abundant references to life, the ocean, the moon, the stars, my struggle, my sadness, my sorrow, my loss, my despair, longing, searching, truth. Yes, I was searching for truth. But I could have said it plainer.

I've been thinking lately about where that self-conscious, deep, despairing girl went. And when it happened.

The change came in gradually I guess. It was "growing up". I've concluded that growing up is when you start living for yourself and not for what other people think of you. By that I don't mean becoming self-centered, I mean becoming comfortable in your own skin, knowing you are rare and beautiful without having to prove it to anyone using words or things. When you don't have to show it to people. Growing up is when your own self-worth doesn't hinge on anyone else's approval.

I'm sure lots of people already know this. I've known it, in theory, for years. Many people are nodding their heads now and thinking "well, wasn't that obvious?" and agreeing that it really is just about getting older, about learning what matters: people not things et cetera. Well, it's really easy to say those things and want to feel them, but it takes a lot of self-work and stupidity and bad writing and trendy clothes that look awful on you to really get there. I had to get there for myself, to a place where I really truly feel content in my own skin, aesthetically and spiritually. I've been feeling it a lot lately, that I am genuinely changing from being self-concious to just being conscious.

Which reminds me of a Buddhist quote (how civilized) I once read that said that meditation is a search for the meditator. All my thoughts and figurin' and worrying and yoga and reading and listening and absorbing and trying too hard and failing have been my meditation. And I am beginning to find the meditator.

And I see that it is hard to be un-selfconscious in this ridiculously material world. I will always compare myself and my lot in life to other people(s).

But I've stopped thinking about those external things. The media drives me crazy at times, but the fact is, I have earnestly and not-quite-fully-but-getting-there evolved into a place where I don't care what anyone thinks of my tastes and my choices or my body or my face or my wit or my charm. I don't care what anyone thinks of my writing. In fact, I'm trying to make it plainer, more spare. I don't care if anyone knows or thinks I'm deep or sophisticated or wise. I have a rich interior life but it doesn't need approving.

I don't feel bad walking around without a tan, which I haven't had in years; I only have one skin to cover my body and I don't intend to bake it. I don't feel bad about reading a crap novel which wouldn't have once passed my standards. I don't feel bad about drinking out of a free mug I got at some trade show instead of hauling out the pottery. I don't feel bad about listening to Joni Mitchell because I actually like her now, not because someone told me I should when I was 25. I don't feel bad about not going to posh restaurants any more. And after all my years of drinking "fine wine", I have seriously contemplated getting one of those 5 litre boxes of generic red wine for my countertop. And a box of white for the fridge. I am sensible and sane now. I don't feel bad wearing a $5 t-shirt I bought at the Superstore (even though it really is crummy-looking).

I still love beautiful things, craftsmanship. I will still chose to have beautiful things around me, but it's purely for me. I still love pottery and art and classical music and BMW's. I still have a book fixation. I still drool over great photography. I still love beautiful clothes. But I have lost the need to procure. I have lost the need to obtain. I have stopped coveting.

David has helped in this journey. He's helped by loving me exactly as I am, by validating me just as I am, in raw form. David has the best vocabulary and the best taste and the greatest wit of anyone I know, and what I love about him is that he isn't self-consciously doing it for adoration. He's plain about it. He doesn't put on airs. He's modest. He's subtle. He's the genuine article. He doesn't pretend to be who he isn't. He doesn't say things to impress other people. He doesn't boast. He belongs to an esteemed men's cooking club full of rich CEO's but you wouldn't know it because he wouldn't think to tell you.

Like me, he fits into the crowd by being kind and polite, but what I love about him is that, like me, he doesn't fit into the mould. He lives to his own code, his own standards, lives his values, which are so far removed from what society is saying and doing these days. He hates the horseshit of the business world. He hates political correctness. He has opinions. He listens. His mind is open but he isn't tarnished by the crap the world wants to fill us with. He doesn't read (novels) because he finds it boring and isn't afraid to say so. He'd rather be hiking in the mountains, not wearing the coolest gear. He is generous and compassionate and caring and selfless and good and not self-absorbed. I love him for that.

I love him for being a free person. And for being the final step on my path to liberation, for helping me unfurl that final heavy curtain I always knew was blocking a truer view.