Experimental walk

It might seem odd that I got a powerchair and now am walking a little better than before. This might be from the better seating angle and back support or maybe an overall improvement from my stricter approach to daily physical therapy. (Gentle tai chi, eccentric loading, gentle core strengthening, and some stretches as I try to re-condition from the summer of illness/surgery.) In any case, I tried walking a block and back on nearly (but not quite) level ground. I’ve been planning to do this for a while.

The hilly part at the end of the block was more difficult, and my “bad” leg started to feel very strange, wobbly, and painful in specific places, as I think the slope uses muscles that never get any use. By the time I was heading back I started leaning on the wall for support as well as my cane. So it was harder than I thought it would be. It seems best to take this slowly, maybe even keeping it to half a block and back for the first week. I’m also not adding it to my “must do this daily” list yet – it is on the “optional” list until I know if it’s something I can sustain. If willpower could do it I would be kicking so much ass right now, I lie here sometimes and dream of how I will walk the 1 block down the hill and sit on the bench by the bus stop in the sun, and back, which is nothing to anyone else but Mount Everest to me. Must not be goal driven, but try things anyway and see how it goes.

(And anyway no one should climb Mt. Everest it is a gross and exploitative and selfish imperialist endeavor. Go do some manual labor instead that contributes to society.)

History of a foot

The gradual releasing of something in my right foot, from a solid mass of clenched up muscle spasms that I couldn’t straighten out, stretched, massaged, rolled, smeared with Voltaren, ketamine cream, and marijuana salve, dragged and limped on since the early 90s, coddled with orthotics for its inward roll which destroys my shoes, folded over in a tremendous crunch in a surfing wipe-out at Corona del Mar while I was 5 months pregnant, walked on the edge of, stuck with torture needles by heartless neurologists, handshaking oddly with sciatica, blended into a shiver of allodynia with the outside of my calf and the superficial peroneal nerve, and the cruel roots of achilles tendinopathy, stuffed into a moon boot for a year propped up on wedges, I feel guilty for calling you my “bad leg” or “bad foot” as if I’m a parent playing favorites among children. It is not always “bad” but it’s always with me like an imaginary friend that I’m aware of as a separate entity with feelings and behavior of its own that I can’t predict or control. Embodied pain is a familiar companion. You get to know its personality.

Years of putting my foot in my partners’ lap to beg for them to try and work out a cramp. Electric shock zaps, buzzing, numb, a million needles, deep ache. Icy cold, suddenly burning like fire ants. The touch of even just air, though an actual breeze is so much worse, feeling like icy fire. When the touch of clothes or weight of a blanket is horrible but has to be borne. I want to protect this leg, don’t bump into it, don’t touch it, not even gently — I could hunch over it fiercely, snarling like a mother wildcat.

In some ways I think of how it felt to be pregnant. I didn’t realize it until my son was born, but while I was pregnant, I was not alone in my body. I was always thinking of him and aware of him as a presence doing things independently from within, next to me and separately animated and motivated, but still contained. A roller coaster you can’t get off, disturbing, rocking your sense of self and power over your body. It was a comforting companionship, even if that sometimes meant having someone hiccuping inside your abdomen at 4am. Then he was born and I was like, “Oh! You’re not there now! You’re somewhere else! I didn’t even hardly realize how much I knew you were there with me, in me!”

My awareness of my leg has some echoes of that experience. I am almost always aware of it (of the pain or odd sensations). I can block it out for a while, but the wall, or the box, to contain it takes effort to maintain. I am in an unwilling, more or less constant, dialogue with the pain. When I’m tired over the course of day it can be very distracting. Hard to focus, or listen to people, or engage socially even though I’m wildly outgoing, because I’m listening to my demanding embodied companion. I have to get kind of like Ninshubar and her little minions the kurgarra and the galatur are to Erishkegal. “Oh! my insides!” “Oh! Your insides!” Honestly, it isn’t even that bad, but it means I have to make space for it to happen. You can’t not listen to it indefinitely. That doesn’t turn out well. You have to have some empathy and be decent to it. A little acknowledgement.

Like having a magnetic sense, or knowing where north is at all times by wearing a little buzzer and compass combination, or another kind of sense or orientation inexplicable by the most commonly understood senses, I have this paranormal awareness, some region of my brain has overdeveloped to handle the signals and try to separate them from the noise, like SETI or a Very Large Array scattered around the nerve cells of my calf. It’s there, and sometimes I have to just stuff it all inside its box, or the underworld, until there’s space to listen properly.

A sweet massage therapist who has been willing to come to my house and just work on that leg, foot, ankle, for 3 hours at a time even, with subtle movements of the joint, loosening it strand by strand over the last few years. She wants to cure it, to find the magic button, to be a healer, to fix me, to re-route the channels. I want a little space, a little relief, gentleness and movement that isn’t a struggle. She doesn’t know the power of her healing, thinking it lies in another direction. It is ongoing, like those lumpy rubber rolling pins underfoot, ice packs, hot pillows, soft braces even in the swimming pool to save it from the sway of the water, the comforting hug of the night splint keeping something like an 85 degree angle, compression socks.

In the last year the solid feeling mass of pain eased up. It differentiated. I could feel specific muscles to work on. The part of my foot that was folded over in the surfing sprain “wants” to be folded “up” in a particular, non intuitive way. Standing on the steps, backwards, hanging my heels off the edge, rising and lowering. Braced against the door to try a painful hamstring stretch. Curled against the pool wall doing the same. Lying on the floor or in bed, my hips up on a pillow, legs going along the wall, feet in the air, trying to get them to calm down. Trying to be mindful as I step. What muscles in the foot are hitting the ground, which are working, am I pushing off? What is happening with my gait? In an odd way, I can feel new, different things, trying to name them and address them one at a time. There is more subtlety.

It isn’t that there are no good sensations. Like the good moments of being in the really, truly warm sun, with no wind, and my leg luxuriating in no pain, in a no-motion warmth, or buried in warm sand on a beach, with so many sensations that aren’t pain — it is extra wonderful and exceptional. Or what I try to do, and I’m sure Erishkegal would have been into, slathering my leg with several kinds of lotion, because why not, it’s something different to feel and a way to connect and it passes the time — capsaicin cream, that hopeful but ethereal Voltaren, maybe some lemon balm or something nice smelling, the funky hippie-couch stank of weed salve lightly disguised with menthol. Or, when I sink into a soft bed with feather light, warm alpaca comforters, leg encased in half of one quilt, protected, safe, away from the air or any roughness, with the promise of rest.

Last week I had gotten some groceries and then a flowerpot and some cat litter at the top of the hill. I didn’t have enough grocery bags. The cat litter and flowerpot were on my powerchair footplate and my feet resting on top to keep them from falling off, a bit awkward but I could do it for a few blocks to get home. I hit a plastic bag on the sidewalk just in front of the house, skidded sideways by just a little, and came up against the tree planter, bending my Bad Foot backwards in a hideous parody of the surfing fold and reverse massage move – The right outside half of my foot, the bones leading to my smallest toes, folded UP. A warm feeling flooded my ankle and foot.

I got back into the house heavily leaning on my cane not wanting to put weight on the foot. It felt almost good! How strange! It didn’t hurt! How was that possible? I put ice on it and stayed off it. Then realized the reason it didn’t hurt was because it was numb.

Of course, I have imagined the foot being gone. What if it… it just wasn’t there? What if I was in an accident and it happened to be that this foot had to go its own way? I would miss it, or would I? Would I have phantom pain, worse than the pain now? Surely, it would just be a whole different dialogue, a dialogue with a ghost. It would be even more omnipresent yet invisible to others like the guy who got chased around town by his own nose. It becomes a nonsensical thought, like having a sinus infection and wishing you could remove your sinuses, which of course you can’t since they are holes in your head and you can’t make a hole be any less than it is. There is no getting away from our embodiments.

At some point in the evening the numbness thawed and became needles jabbing. After the needles subsided a day later, it was like something had torn in many places, but a good tear. My working theory is that maybe some scar tissue was loosened up, even maybe some scar tissue around a nerve sheath? It’s not like I know anything. The shape of my leg awareness is different now. It isn’t fixed. But it’s wildly different. I’m playing with it, with stretches and tai chi and in how I think about weight distribution when I take a step.

That strange experience last week (still ongoing) made me think about my complex relationship with my leg, and its weird fluctuations of pain and functionality. Apparently the Queen of the Underworld will continue to strike hard bargains with me, and there really is no moral to the story and i’m not going to literally name my leg, it’s just that I had this lyrical feeling about my leg and wanted to honor it beyond its badness, and to respect how we coexist, like a witch with her familiar.

Hipster Habit App; strategies to cope with pain

Last week I printed out my friend Amelia’s Hipster Habit App to try it out. How much more could I possibly love this little site that is just a one page pdf that you print and fold into a tiny pocket zine, but calls itself an “app”. Yay! So silly and awesome!

Zine cover

I wrote “naps” into the blank and circled “chilll time” as extra reinforcement. On the second page of the zine I committed to lie down and close my eyes for 5 minutes a day at noon, every day.

After the first try at this I thought that I should go back and change it to 10 minutes. Five didn’t seem like enough. It was just enough to lie there feeling pain in my knees and hands, fingers and ankles, and for exhaustion to surge over me like a horrible heavy blanket. At the same time I had a million ideas of things I needed to remember to do, lists to make, errands to run, work emails to send, weird inventions, things I wanted to cook. So many impulses to leap up and grab my notebook to write down the lists! Instead I tried to drift into incoherence, even drifting with the pain, and think about breathing deeply and calmly.

Actually, 5 minutes of that is plenty!!!

After a week of 5 minute “naps” I find that the habit reminds me to slow down. It makes me realize that I should take some painkiller (currently tramadol, and topical voltaren), AND rest, rather than run myself into the ground over the day. 20 years of weird annoying arthritis means that my main strategy of life is to ignore pain as long as I can until I absolutely drop. Distraction is a great way to deal with pain. Fidgeting and stretching also keeps me from stiffening up so I get up a lot from working even when working from bed.

It helps me to consider my activity level that day. Am I walking too much, sitting with bad posture, do i need to adjust my activities planned, put off doing errands or laundry, get help from other people, stay home, put on ice packs, lie down more? A useful reminder to consider those things.

After a month according to the zine I could increase my habit by 10 minutes. Actually, I’m hoping one of these days I’ll really fall asleep and have a nap. That would be so good for me, but it’s so hard to do when my knees and ankles hurt so much. I look back and can’t comprehend how I coped with last year’s pain levels. I will try never to stand for (hahaah) that much uncontrolled pain again. It is criminal that I was expected to. It’s good to have better medical care. Tramadol is working out well, intermittently when I need it, as it cuts the pain level without making me feel dopey or fuzzy minded. In fact I feel pleasantly amped up even with half a tramadol. Most of the day, I can think clearly, focus my mind, and have lots of energy. Some of that might be a side effect of the drug, but I think most of it is just being more free of pain. Pain is exhausting!!

Compared to last year at this time, I am doing amazingly well. Last August I was still on medical leave only just barely starting to be able to walk without the moon boots (aka walking boots for ankle injuries) I still had 2 or 3 wedges elevating my ankles inside the boots. Without the boots I was still shuffling. Now I can take full steps with a weight shifting gait for most of the day. I can go down and up some stairs, almost full on instead of sideways, though sideways is still much easier, with a cane. I thnk it was my enthusiastic stair climbing that really got my ankles in late 2011, so more caution would be wiser.

One more anti pain tool in my belt is that I have my San Francisco medical marijuana card. It was hilariously easy to get. I am curious to go into the nicer dispensaries around town to see what they are like. So far I have only been into the Bernal Heights Collective one, which was like a sort of seedy cafe/biker bar atmosphere and awfully smokey inside. I bought some hand salve, which is helpful at night on my distal finger joints, which hurt the worst, and doesn’t seem to affect me in other ways other than the one time I got carried away, smeared it all over my wrists and knees in desperation and curiosity, and fell asleep high as a kite. In moderate amounts on one’s knuckles it doesn’t have any euphoric effect at all, and is very helpful for pain! If you have painful arthritis or know someone who does, let them know. Pot hand cream all the way!!

The other factor this year is that I have steroid injections every 3 months in my sacroiliac joints. Can’t remember when my next one is due but I am wishing for it on the right side, the last couple of weeks (my bad side, that makes me limp and drag my right leg). I also am in month 8 of Enbrel injections (an immune suppressant). I inject it every week into my stomach. It is funny but every time I think of my mom telling me when I was little that if you got bit by a rabid animal, you had to have INJECTIONS INTO YOUR STOMACH, which sounded like the worst, scariest, grossest thing ever, even to me who had allergy shots once a week in both arm that would swell up like subcutaneous tennis balls. I find that injections into the stomach at least with a bit of cushioning is easily bearable. Though I have pierced my own nose and given birth with no anesthesia so you might not want to take my word for it . . . I’m a complete badass.

Sometimes I kind of forget that other people are not in horrible pain all the time. Like they just aren’t in pain at all. They tweak a muscle or something and are like “Ow!” or they get a cold. Then I remember that, when i compare myself to other people and I worry that I might be lazier or wimpier than other people, it doesn’t actually work that way. It is something I have to constantly deal with and, not fight, but just be with. It is a constant factor. This actually means that I am good at dealing with pain, and know how; it’s a skill. It’s a bit like I am a secret magician deploying force field armor around myself or have some extra sense into the world of, you know, the internal bits of my ankle tendons or whatever. One more thing about pain while I’m on a ramble: it is very true that you (me) can be in pain all the time, yet be extremely happy, and have a good life. I would say that it takes time, endurance, and work for that to be true. It may also be luck of temperament.

OK…. maybe that is enough.. the hand cream might be kicking in.