What a PAIN!

I don't talk about pain much -- I think it's off-putting, not something most people need to hear about or that I need to share. I don't need sympathy, and I know people have a hard time knowing what to say when presented with the reality. But I'll tell it here in this place, and those who don't care to hear about it can stop reading now.

I am always in pain. For some reason, the damaged nerves - in addition to sending random signals to the muscles in my legs and feet so that they are always moving, twitching, cramping - mistakenly send pain signals too. Sometimes my skin burns, as I imagine shingles would feel. Sometimes my muscles ache. Sometimes it's like having a vice on my feet and calves, getting tighter and tighter. Sometimes it's like pins and needles all up and down my legs. Sometimes it's all of the above or a combination of some. Whatever the pain du jour, it's always with me to some degree. On this cute little pain scale, below, I'd say I'm typically at the 4-6 level, sometimes creeping into 7-9. I don't know that I've ever hit 10, at least not with this iteration of pain.

I have gotten pretty good at powering through it and/or masking it. When I'm doing something fun, like singing in the choir or hanging out with friends, I can often forget about being in pain. That can come back to bite me if I overdo it - being on my feet a lot, walking or standing - but it's usually worth the trade-off. I've modified my life so that I don't do too many things in a day; if I do, the pain or the fatigue will catch up and level me. Life tends to become a smaller enterprise when chronic pain is a part of it.

Pain management has been mostly unsatisfactory for this problem. I've taken a variety of medications, tried acupuncture, meditation, a TENS unit, marijuana (now legal in Oregon and Washington). The pot and opioids can take the edge off, but they make me drowsy and render me ... well, not at my best. Like the little orange pain face, they make it "difficult to concentrate and may interfere with your ability to do certain normal activities." The quest continues for the magic combination.

I went in search of quotes about pain (because it's always a cool thing to add to a blog post, right?) and found a variety of thoughts, from sickly sweet inspirational ("Pain is a gift!") to downright depressing ("There are days I fucking hate everybody!"). This is the only one that resonated with me: 

Don’t Worry, I Won’t Get Far on Foot: Humor and Disability

I remember when I first saw John Callahan’s cartoons, back when I was able-bodied (or temporarily able, as some call it), I was shocked and appalled that someone would poke fun at disabled people. Of course, as I learned later, Callahan was a quadriplegic, the result of a drunk driving accident – so if anyone could poke fun, I guess he could. I suspect his sense of humor got him through some pretty horrific times. He became known world-wide and, though many of his cartoons were quite macabre and very edgy, I think he did a favor for disabled and non-disabled people alike  by finding humor in disability.

Sometimes my humor will have a bit of an edge to it, like when a sturdy young man was admiring how fast I could get around the store on my scooter. “I gotta get me one of those!” he said, innocently. I told him, with a smile, that I’d trade my scooter any day for a pair of legs that worked as well as his. He laughed uncomfortably, but I think he got it.

Humor - or just plain light-heartedness – initiated by a disabled person can put others at ease. It makes one more approachable. Many people don’t know how to interact with someone in a wheelchair or with a guide dog.  It’s an age-old notion that someone who is physically disabled is also mentally disabled – you’ll see waiters or clerks address the person who’s with the disabled one, expecting them to speak for her. 

Children are curious! 

Recently I was on my scooter in the grocery store; a young girl riding in a shopping cart asked her mom why I was on “that machine.” I could feel her mom tense up – I was obviously within ear shot and she seemed mortified that her daughter would ask the question (I don’t know why – but that’s another story). I quickly defused the situation by having a fun conversation with the little girl about my scooter (how convenient we were at eye-level!), about how my legs don’t work so well and it was hard for me to walk; she told me that she could run "really fast" and I told her we could have a race some time. Her mom looked so relieved. I often make jokes in elevators or other crowd situations, sometimes laughing at myself, sometimes just joking in general. I think it helps people to see me and not just a disabled person on a scooter (lightbulb moment just now!!!) 

One of my favorite activities is to take our dog Liza out for a “scoot.” She often runs in front of me and the scooter; it’s an unusual sight and pretty darn cute – I wish I had a dollar for each time someone has said, “Is she pulling you??!” The best part, though, is the number of people who pass by and smile or laugh or strike up a conversation. I love that Liza and I can bring a little joy to someone’s day.

Liza and me on a "scoot."

Callahan’s humor wasn’t everyone’s cup of tea - he probably generated more hate mail than any other cartoonist (except political ones).  "My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands," Callahan said. "Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

According to that epitome of information resource, Wikipedia, Callahan found his humor and artwork therapeutic. I get that. It feels good to be able to laugh at myself with friends, to feel comfortable enough with my Self to crack a joke about my disability. It’s not a taboo subject anymore!

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[John Callahan was a fixture around Portland (ooo, bad choice of words!?); I'd often see him wheeling around downtown, talking to people. He died in 2010 of respiratory complications. To see an archive of his cartoons, visit the official Callahan page.]

“Do you need help?” vs “Let me help you.”

I had an experience last week that left me frustrated and a little angry. I was downtown unloading my scooter from the car (it has a power lift which makes it relatively easy); it got a bit hung up on the tailgate, but nothing I couldn’t manage. Suddenly a woman burst on the scene and declared her intention to help me. I didn’t need help, I just needed to readjust the scooter position a little, but she was insistent, even though I told her a couple of times that I didn’t need help. She proceeded to grab the scooter and pull on it, nearly yanking the basket off the front. I was so shocked that I don’t remember what I said, but it was something loud and firm like, “I’ve got this!” – she finally got the message and walked off in a huff. I don’t remember if I thanked her for her awkward attempt; I think I was a little too appalled.

I know her intentions were good, but why couldn’t she hear that I had it under control? Was it so hard for her to believe that someone with a disability could manage on her own? Or was she just determined to show that she was a good Samaritan?

Here’s how it leaves me feeling when something like this happens:

•   unheard
•   unseen
•   frustrated
•   disrespected
•   that people think I'm incompetent

Perhaps it’s an overreaction, but there are so many things I’m now unable to do that when I am tackling something I can handle on my own, I want to be trusted to do it.

At the very least, I want to be asked and listened to.

I am frequently amazed at the number of times people help – opening doors, getting something off a shelf in the store – and I am exceedingly grateful. But the difference between “Do you need help?” and “Let me help you” is huge. The latter is, I believe, about them and shows no regard for the person they’re attempting to help. The former is respectful and indicates an awareness that the disabled person may be perfectly capable of doing the task on their own. Semantics? Perhaps, but important distinctions.

My encounter with the pushy woman last week could have been a teachable moment for her, but frankly when I’m trying to get somewhere, I have other things on my mind besides educating others on what’s appropriate behavior. Hopefully, she’ll think about it and do it differently next time. 

Next steps (warning: puns ahead)

I decided to resurrect this blog since some new challenges have come up in the last six months or so, and I feel drawn to again share what’s going on in my little corner of the world. I knew it had been a while since I posted here, but didn’t realize that 3 ½ years had passed! Time flies.

I’ve learned a lot in the last few years about disability, access, acceptance, letting go, grief, love… some are lessons I’d rather not have to learn, but some are deep blessings and lessons in grace.

Berkeley Breathed

The most prominent pending change these days is my need for a power wheelchair in the very near future. Like most next steps for me, I’ve been dragging my feet (oh, so many pun opportunities!). I started talking about this over a year ago; then more serious talk, leading to a home evaluation by a PT and a vendor to learn the process for Medicare coverage (power chairs do not come cheap!) The ball was in my court, and I let it lie there for a while – I kept imagining what it would be like to wheel around the house. It felt so irrevocable, like the last nail in the coffin, the final act of giving in to the damn disability.

But walking, even with the walker, has become increasingly difficult and painful. I’ve had a few falls, and the thought of breaking a bone – or even spraining an ankle - is distressing. So I have an appointment with a PT next month who will evaluate the necessity for a chair, and then we can get the ball rolling. There are a series of hoops to jump through to satisfy Medicare that it’s a necessity. I’ve been told that because I am partially ambulatory, it might be difficult to convince them (so I have to wait until I’m flat on my back to qualify??) – but I’ve had such good experiences with the previous hoops I’ve jumped through, I have confidence it will be a slam dunk. (Have you noticed how athletic the words are for action plans??)

Meantime, we are examining the changes we might need to make in the house to accommodate a chair (we already had a ramp built last spring). I’ve been using my scooter more and more and have a better sense of how my days will roll with a chair. I’m starting to look forward to it now, because it’s so damned exhausting to walk from point A to point B and I’d rather spend my energy doing something more fun and productive. 

I have quite a few ideas for more blog posts, so stay tuned! 

The 'M' word

I am so grateful for the good insurance we've had these many years. I don't know how many hundreds of thousands of dollars in medical bills I've racked up this last decade, and without good insurance I would either be bankrupt or dead. For all the claims, I've only had a couple of disputes, and they were minor. I didn't even raise my voice.

I thought I'd have at least another year before I had to think about Medicare. But because I am now on disability, it's mandatory that I go on Medicare at the two year mark. My retroactive disability date is April of 2010, so that gives me three months to get my ducks in a row.

Yesterday I went to an informational seminar, Retirement 101: Getting Ready for Medicare. Mostly it involves some paperwork. But there are decisions to make about supplemental coverage. And because Laurie won't be eligible for Medicare for at least 12 more years, we need to get coverage for her too, since my county subsidized retiree insurance that had covered both of us will end when Medicare starts up.

I'm terrible at this sort of thing. I procrastinate, my eyes glaze over when finances or future plans are discussed. Laurie is a planner, a comparison shopper, an information gatherer, while I'm more of an in-the-moment, whatever-will-be kind of gal. We balance each other well (though I suspect she thinks she gets the short end of the stick).

2011 - A Very Challenging Year

Oh no, you say, not another year end retrospective?!! Well, yes, of sorts. This one, though, is composed of love and gratitude for my amazing partner, Laurie, and for all she does to make my life so rich and full. This last year she has taken on the roles of cheerleader, caregiver, Sherpa, therapist, financial advisor, problem solver – in addition to the typical roles partners play: confidant, friend, lover.

September 2, 2005

Laurie and I got together in that “in between” time for me – after the worst of the cancer treatments and before most of the side effects set in. We loved going for walks, to the farmer’s markets, to concerts and plays. We worked in the garden together. Except for some ongoing intestinal issues, I was healthy and able-bodied and often prided myself on being the “butch” in the family (in reality, we shared that role, depending on the task at hand).

Of course, much of that changed over the last few years when I began to lose my balance and mobility and could no longer work in the yard, climb ladders, or even carry bags to and from the car. Since it didn’t happen overnight, the changes for us have been gradual, but there was a point sometime early this year when it clicked with us that this was not going to get better and we needed to get some changes in place.

This is where Laurie really shines. Where I deal in denial and procrastination, she plans ahead, researches extensively and puts ideas into action. She researched hand controls the day after I put the fear of Goddess into her and our friend Nan whilst driving. When I mentioned a few times that I couldn’t imagine climbing the stairs for another 12 months, let alone the 12 years we hope to be in this house, she went online to look at stair lifts and before long we had one installed. (This was when it really dawned on me that she wants to keep me around!) She encouraged me to get going with the disability paperwork, and when that came through, helped me research new cars, scooters and scooter lifts.

Of course, in addition to all the pragmatic details, there was (is) that huge emotional component to deal with. Our lives had changed irrevocably. We were both dealing with tremendous grief, occasional depression, me with chronic pain and Laurie walking the fine line between encouraging and nagging (which she does so well). Sometimes it feels like enough to drown us.

But here’s another thing I love about her that she does so well: self-care. She has done a superb job of gathering a support system for her specific issues as a  (for lack of a better term) caregiver. She takes good care of her body and spirit with yoga, massage, meditation, good food (yes, chocolate is considered healthy). She gets to be the butch now in most circumstances! She’s gotten stronger and more capable of doing some things she never had to do before (e.g. packing the car for a trip).

Yes, this year has been filled with many trials for us. I have been blessed with a phenomenal partner who helps me navigate the rough waters with love and respect. I could not have landed in a better place.

I love you sweetie.

The Courage To Do What Needs To Be Done

This weekend our choir (Aurora Chorus) performed three amazing concerts. We are 100 women singing peace, light, beauty and harmony.

This choir has become my saving grace. Singing has always been a huge part of my life – it is one of the major ways I define myself: Singer. I can’t imagine a life without singing, without performing, sharing the music, in harmony with one or with 99, and giving it as a gift to others. I’d listened to and admired Aurora for years, but knew I couldn’t commit to the rehearsal schedule and demands of learning the challenging music until I retired (I do NOT know how all you working women with families do it!). So three years ago, within a week of retiring, I was on the roster for the next singing term.

By the time I started with the choir my physical difficulties had begun to appear – walking was getting difficult, I’d started using a cane. I was easily fatigued, and tripping and falling were common occurrences. (Moments before one concert at which I was singing a solo, I tripped and fell backstage and landed hard on my knees.) It became obvious after the first concert that I would have to sit to sing – not a singing position I’m fond of, but concentrating on cues and lyrics and vocals is preferable to concentrating all my energy on staying upright.

The choir is demanding; there’s a lot of music to memorize, some of it very challenging. We have strict weekly rehearsal obligations, plus additional required rehearsals throughout the term. There are days it’s damn hard to get myself to rehearsals, and sometimes the thought of two full days of performing or rehearsing at our weekend retreat feels overwhelming. But I suck it up and I do it -- and I never regret it. The music fills me up, the community of women supports me and we share an incredible bond of the choir’s vision: Powerful women singing peace. We are blessed with a gifted conductor who draws a phenomenal sound out of a non-auditioned choir and who composes exquisite choral pieces.

I still try out for solos and volunteer to play an instrument on songs, and I’m part of a new ensemble that steps out of the choir for a song or two. In concert, this means getting up from my chair – with difficulty - and walking – with help – to a microphone or another chair or a place on stage with the ensemble. It is not inconspicuous. I use my cane, I usually have someone’s arm to lean on and I do my Frankenstein walk downstage. If I stand, I hold on to the back of a chair or someone’s arm. I’m in the spotlight and it is humbling. As I told Laurie this morning, a part of me feels incredibly self-conscious, and another part feels so proud that I have the courage to put myself out there for the thing I love so dearly. And I couldn’t do it without the love and support of my community, in Aurora and at home.

So today, I am completely exhausted, my feet and legs are so so so painful, but I am filled up and smiling inside, remembering all the warmth and joy of singing with my Aurora sisters, the delight of the audience responding to Hine Ma Tov, O Holy Night (Holly Near’s lyrics*) and Gate Gate, and the gales of laughter when, for an encore, we so seriously played our kazoos on Vivaldi’s Gloria. And the euphoria of all that work culminating in three stunning concerts.

Could I live without it? Yes, but for as long as I can muster the courage and stamina to do this, it will continue to be a vital part of my well-being because, in the words of Joan Baez, To sing is to love and affirm, to fly and soar, to coast into the hearts of the people who listen....

Bodhi svaha!

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*Holly's lyrics for O Holy Night:

O holy night, the stars are brightly shining
This is the time a new year is born
Long has lived the world in fear and error pining
But when peace appears, the soul knows its worth
A thrill of hope, the weary world rejoices
For yonder breaks a new and glorious morn

Rise from your knees, and hear the people’s voices
O night divine, O night let peace be born
O night, O night, O night divine