choices, chances, and chronic pain

Bee's picture
Sun, 07/31/2011 - 04:45 -- Bee

My productivity is set by the health of my right hand, and that is determined by how often I use it.

If I rest, and keep the arm close at my side, the hand remains useful for simple tasks like opening doors. But if I do any manual activities for longer than half an hour - including but not limited to cooking, cycling, and typing - the hand blows out. Literally: the numbness starts in my smallest crooked finger and spirals up around the arm to my neck, with shooting pain following posthaste.

From the perspective of all the medical doctors I have consulted in major teaching hospitals in two countries since 1980, this is a permanent and irreversible injury. My hand, elbow, and neck were smashed beyond help and the intricate connections are (to use a technical term) ruined. Muscles, tendons, cartilage, bones, and nerves were broken or shredded. There is no cure.

But the original injury happened when I was so young there was also no option except to work through the pain. You can't really drop out of life in the fifth grade, and secondary school was somewhat compulsory - I didn't live in a place where a government agency wanted to pay my bills, and my family could not afford an adult dependent. I worked because I had to, no matter how much it hurt.

The arm injury is the least serious of my constellation of medical problems (cancer always wins that contest, even in remission) but the most visible and persistent. I am right-handed, and have never learned to switch. When I stumble I put out my right hand, when I grab or stretch or stroke I instinctively use my right hand. I've made efforts to adapt, taping classes and lectures, writing (badly) with my left hand, typing with one finger, becoming an early adopter of computers.

When my daughter was born twenty-one years ago I was too weak to hold her eight pound body with my right arm, too injured to contrive a solution. But I had to, and I did. I never became ambidextrous, but I learned to parent left-handed. And that serves as a metaphor for my life.

If I had been healthy I know that I would have chosen a different career, but I had to pick something that gave preference to intellectual skills over physical ability. I would have liked to be a welder, but instead I went to graduate school and studied public policy. My wonky brain had to take the burden for everything my body could not do, and it had to develop a plan that included health insurance: because otherwise I would have died.

Fast forward past the early career in activism and government service, through the years of writing and publishing, across the peripatetic existence traveling in search of safety and equitable public policies. Glance with repugnance at the fact I married - twice - for health insurance. At forty I am healthier than could be expected, and I have achieved a great deal more than my working class cancer stricken childhood promised. Including acquiring citizenship in a place where everyone has equal access to health care.

But there is still one permanent fact: my hand hurts.

All the time.

When I lived in Portland I could barter with friends for naturopathic care, deep tissue massage, acupuncture. When I lived in Seattle my health insurance covered a small but useful amount of alternative therapies. And, much to my surprise, the treatments helped.

The improvements were small and incremental, but real. People who are into this kind of thing talk about meridians and chi. I don't believe, I just experience, and this is the truth: one session of acupuncture reduces the pain. By the third, the pins and needles sensation is gone. If I follow the whole plan my arm is not normal but it is functional, at about half the level of my left arm - and this is something akin to a miracle.

Now I live in a country where alternative medical paradigms are frowned on, and highly adept practitioners are hard to find. I don't know anyone I could barter with, and until recently I couldn't afford the treatment. When I can't find an alternative I just work through the pain, until I can't work at all.

Recent deadlines, secret projects, and weeks of slogging through the archives had a predictable and woeful effect. I ignored the problem until my hand was flopping, useless and numb, and the pain kept me awake every night.

Then I gritted my teeth and made an acupuncture appointment. The very nice woman who examined me was visibly distressed, offering comments like "But that is horrible!" and "I don't know how you cope!"

I shrugged; I didn't know I had a choice. Objecting to chronic incurable pain is like arguing with the sunrise.

Then I subjected myself to a regimen of needles - at least thirty in each session, every week for six weeks, limited only by what the practitioner herself can tolerate. I don't flinch, I don't feel it. In fact, as soon as the needles go in I fall asleep, impervious to the jabs, and the heat, and the electrical impulses she sends across the metal.

This treatment costs £55, and one sliver of my brain is dedicated not only to multiplying the exchange rate, but also to reckoning what that amount of money would have meant to me as a poor kid or young parent. But when I walk out of the clinic flexing my hand I am endlessly thankful that I can open my wallet and pay.

Hours later I notice that while my neck feels tender something else hurts more. That secretly, against my own advice, I am filled with grief and regret - because my illnesses and injuries have prevented me from doing so much, yes. But mostly because they have taken me so far away from home.


rease's picture
Submitted by rease on

im glad to hear something works, and its worth it to be able to use your right hand, you deserve that much at least. thanks for re-affirming your warrior-ness. i alternate between numbness and pain - and while i prefer to not be in seems better and healthier to hurt and then be forced to get treatment, than to let myself decay under a layer of shock. thats been the hardest thing for me in seeking treatment. " ive made it this far, and really, i can just tune out the pain, i cant afford treatments." The idea of paying money in exchange for health seems like a luxury, even with severe illnesses. But really, its crazy to think that way. Shock is an emergency state, its not really a way to live. I think its definately an issue of growing up poor with a mentality that healthcare is secondary. Theres so much other important shit. Suck it up, right? Im really glad you have access to a treatment that works, and can afford it. Getting the courage to pay for some good healthcare is probably the hardest thing I have ever done, or rather - tried and then wussed out about.

Bee's picture
Submitted by Bee on

Yes, exactly! Everything is related to growing up working class, and this idea of sucking it up as a sort of.... badge of honour? Or at least, a moral imperative. Toxic and terrible but true. And one of the hardest things to get over, because any extra money I have should either be hoarded against disaster, or used to rescue my comrades. Spending money on myself for any reason is difficult, and spending it on medical procedures not sanctioned by a military doctor? That is just insane. Living in a state of shock is more natural to me. My heart beats way too fast, all the time.

vkitty's picture
Submitted by vkitty on

Chronic pain is so, so difficult. I have been taught to suck it up as well. I want to say that my dad was a hippie and that's why we never went to the doctor, but the truth is we never had money for a doctor. I've had horrible scoliosis since childhood, and those back braces other scoliosis kids got to wear seemed like a luxury. Now I'm plagued with chronic back pain, and I'm certain that's where my fibro came from.

I am so, so glad you found something that helps, even if it's a little. I get that it's hard to spend money on yourself, but think about how much more useful you will be to the rest of the world if you are fully functioning. I think that's worth it! To have gone through so much and still come out smiling, you are such an inspiration!

"Overcome the angry by non-anger; overcome the wicked by goodness; overcome the miser by generosity; overcome the liar by truth." -Buddha

mamanopajamas's picture

I could have written much of what you wrote, Bee - i have severe nerve damage in my left arm which has rendered it mostly useless since I was a child, too. I haven't tried acupuncture due to the same issue - paying for it seemed a "luxury" even though I have been told over & over it would help. The last specialist (read doctor in a hospital) told me the nerves were so damaged, the muscles so atrophied i shouldn't be able to hold a pencil. I laughed & said "yeah if I believed you I wouldn't be able to take care of my kids."

I had such difficulties when the children were little and had to make changes - all while fending off complaints from family why was I doing things that way?? I couldn't tie 3 pairs of little shoes (not even one before i was so numb from pain) that my daughters wore non lace shoes forever and my 8 yr old right now has no idea how to tie a shoe - i still have to deal with criticism on that & explain again and again to people who have known i have this issue my while life

I still have to argue with my OWN daughter about just how much pain, or numbness or inability I have BECAUSE her whole life I did such a good job of functioning and hiding that i was in pain that she has no real concept of what i live with - it took until a few years ago when we had all hard tile floors and i was always breaking things that they realized how much I dropped stuff -- they had never know before as I could take care of things without them knowing, but CRASH and broken glass etc was not something I could cover up

I shrugged; I didn't know I had a choice. Objecting to chronic incurable pain is like arguing with the sunrise.

EXACTLY! especially when you are a single mother and there is no one else whose gonna carry the groceries or do the dishes etc ... and the reality which is in the back of your mind is "the more I do the more I can't do, the more pain or numbness i will have," and then it just keeps spiraling out of control and into deeper pain and helplessness -- NOT a feeling of it, BUT TRULY helplessness...and you hide it from your kids so they don't get scared & worried

and the scoliosis -- argh, and the having & carrying and caring for of 4 kids and I really don't know HOW I DO IT. it was ONLY because I HAD to apply for Social Security last year that I did and even though I have decades of medical records they managed to ignore those & deny me... whatever

anyway -- I am so sorry to hear you suffer much as i do

 "Do not speak--unless it improves on silence." ~ buddhist saying (wow - my email on file was so old - it was from the old hipmama email!)

rease's picture
Submitted by rease on

"I still have to argue with my OWN daughter about just how much pain, or numbness or inability I have BECAUSE her whole life I did such a good job of functioning and hiding that i was in pain that she has no real concept of what i live with - it took until a few years ago when we had all hard tile floors and i was always breaking things that they realized how much I dropped stuff -- they had never know before as I could take care of things without them knowing, but CRASH and broken glass etc was not something I could cover up"

Hell yes, this! Most people I know don't know, and when I have to repeatedly say I'm in excruciating pain when im functionin just fine it's like - people don't get it. My kid is resentful about it, as of lately he doesn't understand why I can't do shit anymore the way I used to - he didn't know how much I went through to support him, and granted- he doesn't need to shoulder that burden. But, it still sucks for me.

Bee's picture
Submitted by Bee on

Yeah, I totally agree with the stuff you have written about chronic pain. It is really, truly degrading. And if you grow up poor there is an extra level of social stigma around treatment. You don't want to admit that there is a budget issue, you just want to sound super tough and capable - like you don't really need that broken limb set. Etc. I remember when I went to university meeting kids who complained about, oh, a sports injury, that they had already consulted an ortho surgeon about. It wasn't that I lacked sympathy for their pain - I just literally did not know how to talk about it on that level. The people who raised me do not rush to specialists, even when they want to.

My children loved Mork & Mindy when they discovered it in reruns, because they say I act like an alien. I care, and I feel, I just have communication problems.

Bee's picture
Submitted by Bee on

Oh, how I hear you! I've been there with the little impossible shoe laces... and all the details of raising kids that seem so easy to outsiders, but so impossible when you have a chronic illness.

In my own mind I am very much the ten year old in the neck brace and arm sling with ugly prism glasses and a bad haircut. Everything since then is just a layer of protective covering - literally - I wear black head to toe because sunlight is dangerous for me, but other people see that as a fashion choice. I stand with arms crossed because my hand is so damaged and painful, but people read that as some kind of nonverbal signal of warning. I never make eye contact because I am always checking for escape routes and bandit attacks (thanks traumatised brain) but even my friends forget that I am sensitive.... not surly. Yes, I'm impatient, but that is because I really understand that life is short.

Chronic pain and illness are alienating, and degrading, even in super close relationships and friendships. I started pretending very early, learning not to cry because I needed to protect my mother. I've continued to obscure the truth to protect my children and friends. I feel incredibly lucky when I meet someone who gets it. Thank you for telling your story!

Bee's picture
Submitted by Bee on

It does suck. And it is so confusing, because the instinct is to protect our kids... but then we want them to be empathetic, and extrapolate truths about the world. I find the whole thing very difficult and tend to veer too far toward lecturing. My children can probably recite whole portions of the Americans with Disabilities Act from memory, though they would roll their eyes while doing so.

mamanopajamas's picture

no thank you for sharing yours -- I may not have ever written about mine had it not been for your openness

as always BIG HUGS

 "Do not speak--unless it improves on silence." ~ buddhist saying (wow - my email on file was so old - it was from the old hipmama email!)

turtle's picture
Submitted by turtle on

55 pounds (dunno how to do symbol and it's too hot to figure out ... I blame the heat for everything!) PER TREATEMENT? ack ack ack. I forget how lucky I am to have a community-based acupuncture where I can pay as little as $15-- makes a huge difference since to be effective I have to go every week for some time, like you say. Sucks that England is so bad at the alternative therapies, when they are so good at paying for (allopathic only?) health care in general or no way to go around the whole exchanging of money & do bartering instead.

Find ecstasy in life; the mere sense of living is joy enough. -- Emily Dickinson

You want to do what you think is right and what matters to you, and if other people don't like it, as my father would have said, they can go fuck themselves. -- Amy Bloom