How can I keep from singing?

Our choir (Aurora Chorus) sang two concerts last week, titled Grace Before Sleep. We’ve been preparing for this since September with weekly rehearsals, extra section rehearsals, a weekend retreat, endless memorizing and learning foreign language diction (Norwegian, Hebrew, Swahili, Spanish). It is a huge commitment, this choir gig – a commitment of time, energy, love. I know what I’ve signed up for; I know it’s challenging and exhausting; I know it’s a test of my mettle.

That's me, center stage, singing Mata del Anima Sola. 

I've written about the courage I need to muster to participate in these concerts. This one was no different. Singing a solo and accompanying a song on guitar in both shows required me to make my way to the front of the stage and back (with assistance) four times. I feel very conspicuous during this transition time, cane in one hand, gripping a sister singer with the other, trudging slowly and clumsily. So it did not help that I miscalculated and went upstage one song too early! When I realized what I'd done, it didn't make sense to struggle back to my seat and then move up again, so I sat there center stage through one whole song! Awkward!

And in spite of all the difficulty, I sang and played well, the audience seemed to like it, and it felt good to be able to do, once again, the thing I love so dearly. I am supported so completely by the other choir members, not just during my solo, but all term, whether it's negotiating the stairs in our rehearsal room or schlepping my guitar, there is always a hand or two at the ready to help.

It was not an easy day, though. The venue we've been using is wonderful for acoustics and aesthetics, but it sucks for accessibility - especially, like on this day, when one or both of the elevators are out of service and I have no choice but to use the stairs (with help, of course).

I've had to make a hard decision to not sing in this venue any more, after our March concert. It will break my heart to not participate, but it adds too much stress and physical strain to deal with flights of stairs in addition to the demands of stage movements and, well, just getting there! It's also not very good will for our audience members -- had I been attending this concert and been forced to use the stairs, I don't think I would have stayed. I have been in dialog with the chorus coordinators, and they get it and are taking steps to improve the situation. It has taken longer than it should have, however -- this is an issue that has come up over and over in this venue.

And it was a battle I did not want to take on for Grace Before Sleep. 

Photos by Kathryn Kendall.

Some etiquette and common sense...

...regarding people with mobility devices:

Sometimes I wish I could engage a protective bubble around my body when I’m in a crowd. It is a vulnerable feeling when one has balance issues and the potential for getting bumped or jostled is high. Here are a few things to keep in mind that will make life easier for people with mobility challenges (pardon the shifting POV):

•  If you see someone using a cane, give them plenty of space. They are likely to be a bit wobbly, and any sudden bump, or even the potential for one, can be distressing at best and dangerous at worst. 
• If someone with a cane is standing in line, DON’T cut in front of them to get through. It’s startling and has the potential to set off a domino effect. There is extra space around me in a line for a reason – and the reason is NOT for people to pass in front of me. (This could also be true for a walker user, depending on how stable they are; always err on the side of caution.) 
•  If someone is in a wheelchair or scooter or walker, pay attention to how you engage with them. It’s easy to feel left out of a conversation and very uncomfortable when I have to strain my body to participate. If I’m standing with my walker, I can’t turn around quickly or easily to talk with someone. If I'm sitting on my scooter, I have to crane my neck to listen or speak if you stand off to the side or behind me. Place your body near or in front of me when conversing; look me in the eye. If you can’t see my face, I can’t see yours and I certainly don’t feel part of the conversation. This is especially true when two or more people are chatting with me. I know it’s not intentional, but it is so challenging to feel connected when I’m so disconnected physically. 
•  I’m one who doesn’t mind talking about my physical challenges, but not everyone feels that way. Ask if it’s OK to talk about it or to ask questions. I will probably give you way more information than you want! 
• The same applies around asking to help. I love it when people say, “Let me know if I can help” but I’m not fond of people assuming that I can’t manage things on my own. I’m very good about asking for help when I need it, but not everyone is – that’s why asking is so important. (See my earlier post for more guidelines on this subject.)
• When you're planning an event - party, concert, etc. -- try to use a venue that's fully accessible. That means access to the building and to the area where the event is, accessible bathrooms (and preferably ADA, with grab bars and toilets that aren't made for a first grader!), and access to food areas. If there are tables and chairs check for paths for people using walkers or wheelchairs. This seems like a lot to ask, and may not be possible at times, but being excluded from events due to lack of access sends a hurtful message. If you can't provide access, let people know so they don't show up and find they can't participate. It still may not feel good, but at least they will have the information ahead of time. 

That's it for now. It seems like a lot to take in, but really, it's common sense. We're just not conditioned to think about these things. But I'm making progress in training my friends!

Reality

I had an appointment last week with a PT; her task was to evaluate me for a power wheelchair. Yes, I finally got the ball rolling. It feels a bit surreal, and not a little scary. Why scary? It is symbolically the biggest change to date in my mobility.

But after this last week, I am feeling ready. I've been on my feet a lot this week, doing more physical labor than I have for a while (cleaning and organizing my studio - with help from my friends). I've been in a tremendous amount of pain and my fatigue level is off the charts. My upright stability continues to decline, near-falls are increasing, walking is so tiring and unpleasant because of the way I have to move my body to make it go forward. The toddlers walk better than I do!  I suppose I could take lessons from Ms. R, who, does an elegant spin and fall.

The assessment was fairly straightforward. The PT - Christine - asked a lot of questions about how I get around, what my pain level is, the progression of disability, and lots of medical stuff. She measured me, measured the strength in my arms and legs, range of motion in my feet. She watched me walk with the walker, watched as I tried a manual wheelchair (I can imagine using one in the house, but not out in the world), and then a power wheelchair. I was hoping to zip around the facility, but they'd had the speed adjusted so it only used the tortoise setting. It felt comfortable and "normal" - probably because I use my scooter so much.

Tomorrow the vendor, Jason, will bring a demo chair here to the house. While my concerns are physical and emotional, Laurie's concerns live in the realms of logistics and aesthetics. So we'll see how big a footprint this chair has, how it will work getting in and out of the house, through the rooms, how pathways through the rooms will need to be set up. I maintain that the wheelchair isn't much bigger than the walker and has a much tighter turning radius. We'll order a custom seat that can raise to counter height, so we can get rid of that kitchen stool. (Jason did inform me that Medicare has never paid for that feature, however.)

Laurie is hoping it isn't a "serious looking" wheelchair.

This is what I'm secretly hoping for:

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!

---

[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!