Good Grief

Many of us associate grief only with death. But I find that grief comes in many forms – there are little deaths (not the French meaning!) that occur frequently when one is dealing with a progressive disability or illness, and grief is an ongoing part of the process.

I must grieve for what is lost to me. The list is long, and getting longer. I often don’t allow the grief in (or out) – it seems pointless. Nothing will change, whether I acknowledge the loss and grief or not. But stuck emotions will eventually become depression and a sense of hopelessness. I struggle to find the balance between a healthy expression of difficult emotions and becoming maudlin.

I made the heart-wrenching decision to drop choir this term during a week of intense, unrelenting pain. It has now abated somewhat, but I still think it was the right decision.  Winter is a difficult time to get to rehearsal every week; now that I’m taking my scooter, I have to load it in the car, unload it at the parking lot, and load it again to come home. It’s cold and wet. Getting there was daunting, rehearsals exhausting (the rehearsal room is not access-friendly), and I just don’t have it in me right now. Hopefully I will feel different next month when the new term starts up.

It’s another big line item to add to the grief list. I miss the weekly time with my friends, I miss robust singing and the beautiful sounds that come from our choir. I miss the laughter. I always thought choir would be the last thing I’d let go of, that they’d have to pry the music from my cold, dead hands.

But I still have my ensemble, Tapestry; we meet here every two weeks. There is much laughter and beautiful music, and a comradery that is unique to a singing group. (And now I force them to sample my baked goods!) And there are plenty of other things I can still do, activities that make me happy, such as arranging music, photography, and writing.

Sometimes I put a ludicrous twist on it and think of things I’m unable to do, such as climb Mt. Everest or compete on one of the dance shows, run marathons all over the world, cycle the Tour de France. Yes, definitely my disability is keeping me from these activities!

But the grief is real and must be dealt with if I want to be healthy. I've begun working with a yoga therapist, which is a lovely combination of assisted yoga poses, guided meditation, and good old fashioned talk therapy. In my first session this week I experienced a sensation in my throat chakra that I haven't felt for a long time: it’s like a big chunk of ice partially blocking my throat. I know that tears are close, and the thaw is not far behind. Soon the tributaries of grief will loosen, the river will flow, and I will let it out and hope that the floodwaters don’t submerge me.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   

Creativity and disability

Birds by vladstudio.com

I’ve been a fairly creative person most of my life. Topping the list of creative enterprises is my lifelong love of music, primarily singing. It’s the one I always return to if I stray. Songwriting and guitar were natural progressions for the type of music I sang. And I’ve always loved to write.

Over the last decade I’ve taken on some new creative challenges, including photography (samples), collage (sample), piano, song arrangement, writing blogs, and teaching music (web site).

I’ve been thinking quite a bit about how being disabled and having chronic pain have affected my creativity – and vice-versa. There are the obvious physical effects – I’m limited as to where I can go to take photos; I don’t have the stamina to perform music as often as I once did; getting myself to choir is becoming more difficult to manage; and even with a raised garden box, I find gardening challenging and not as enjoyable as I once did. But there are some positive effects as well.

My most recent creative undertaking has taken me by surprise: I’ve begun baking. For some reason, this month I binge-watched The Great British Bakeoff: five seasons of very fancy baking – tarts, pastry, breads, puddings, biscuits (known in the US as cookies). Baking is not something I’ve ever spent much time doing, except my annual challah (braided egg bread) around the winter holidays and the very occasional batch of cookies. I was so inspired by the beautiful creations on the show, and it looked so satisfying to mix some ingredients together and, like magic, pull a savory pie or gorgeous dessert out of the oven or freezer. I love the science, the chemistry, and the artistry of it.

To get baking, my first task was to set up the kitchen in the cottage (studio) to make everything accessible. It’s a small space and I need to sit on a tall stool for most of my work. Almost everything is within reach now – bowls, pans, flour and sugar, utensils, appliances. It has also required purchasing quite a few toys tools. I’ve never before drooled over kitchen catalogs or cookbooks (aka baking porn). 

My first endeavors were mostly successful: fantastic focaccia, perfect pistachio shortbread, and a special order of vegan cinnamon rolls for Laurie. My cheesecake was a disappointment to me, though it got rave reviews from friends.

I have to wonder: is all this dabbling in different creative outlets a form of distraction for me? I don’t think about pain when I’m singing or arranging a song or kneading bread dough. I’m content doing something that’s fun and productive, and my mind is occupied with the task at hand and not stressing about my burning legs. A couple of times I’ve taken on a bit too much with a baking project and I get tired and sore, but I think that will get better as I get more organized and familiar with techniques and learn to pace myself.

Pure distraction for me is more about activities that don’t result in a satisfying product – things like watching TV, spending hours on Facebook, or playing games and doing puzzles on the iPad. I can get absorbed and sometimes forget about pain, but I don’t feel as satisfied at the end – sometimes, just the opposite: I feel like I’ve wasted time.

At a point in my life when I could – and sometimes do – feel rather useless, it’s good for me to dive into a project that feels purposeful, that results in something others might enjoy and that makes me feel competent and good about myself. Singing does that; taking beautiful and/or creative photos does that; and now baking something with care and love does that (though I need to search out vegan recipes for Laurie!). I’ve signed up for a 2-hour cooking workshop next weekend: 4 Desserts Every Cook Should Know (e.g. dark chocolate mousse!); we’ll see what comes of that, besides expanding waistlines.

Uh-oh, I just discovered three seasons of The Great Irish Bakeoff online. But this is research, not mindless watching! Right??

Pistachio shortbread

Coming Out....

It’s taken me a long time to decide to write about this. It’s not technically a part of my disability, but it is directly related to it. It’s also something I’ve thought of as quite private, but also that it might help other people to understand or to cope.

The radiation, which has caused the nerve damage to my feet and legs, hasn't just affected my lower limbs. Think about the organs that are in your pelvic region. Can you guess where this is going? Stop now if you’re squeamish.

When I had the original rectal cancer surgery in 2002, the surgeon thought he was doing me a favor by creating what’s called a J-pouch – essentially an internal rectum-like reservoir fashioned from the large intestine and designed to avoid a colostomy. I had a temporary ileostomy for a couple of months while everything healed up; it was pure hell and I couldn’t wait to get rid of it. Then it was reversed so I could, supposedly, poop like I was originally intended to. And along came chemo, which probably did a lot of damage to my intestinal tract (ironic, isn’t it?). And, of course, the radiation, unbeknownst to me, was in there happily doing its thing to the cells and nerves in my pelvis.

Image from Someecards

The J-pouch was never good – sometimes, it was OK, but usually I had very little control over my bowels; often I would go 15-20 times a day, and usually with very sudden onset. I tried so many things – complete change of diet, acupuncture, herbs, colonics, and on and on. Then after a few years it shifted – in hindsight (so to speak), I now know it was the radiation doing its slow dance. Sometimes poop would come spontaneously (shit happens!) and sometimes I would spend hours trying to evacuate it. I got a lot of reading done sitting on toilets. It pretty much took over my life. If I wasn’t pooping -- or trying to – I was thinking or worried about pooping. A pretty shitty way to live.

After putting up with this for several years, I finally decided there are worse things than having a colostomy (which is easier to manage than an ileostomy). I talked with my surgeon, my therapist, with Laurie and with friends who had been through all this with me; I conferred with other colostomates at great length, and finally made an appointment for the surgery in August of 2009.

Even though having a colostomy is not without its problems, it is light years better than what I was dealing with before. Once the initial adjustments were made – the correct fit, the right system (there are tons of options) – I’ve been almost able to forget about it. Oh, I worry about leaks and odors and the noises it often makes, or about the balloon that poofs out on my belly when it’s full of gas; sometimes the skin around it gets irritated. I can live with all that – I’m not tied to the toilet or afraid to go somewhere lest I have an accident. (Back in “the day” I could tell you where every public toilet was in the tri-county area.)

There is a lot of support out there for people with ostomies. I joined an online group shortly before surgery and got a ton of useful information, made some friends, and even managed to share some amazing humor. After I was a seasoned veteran, it was always heartwarming to be able to help someone who was new to the world of ostomy– you could almost feel the relief when they realized they weren’t alone and could get some peer support and straightforward answers. That forum has disbanded, but writing this has made me want to see if I can contact some of those folks. 

Image from Someecards

My favorite part of the online group was our sometimes wild humor. A couple of us came up with the Ostomy Dictionary, a bunch of terms in the style of Ambrose Bierce. It is still online in several places. This was one of my contributions:

Leg warmer, noun: a pouch, recently filled with “product,” (i.e.   poop) resting against a bag peep’s thigh. Has the temporary effect of a hot water bottle.  Desirable in winter in cold climates.

More definitions here.  Be forewarned: it's explicit.

And what else resides in that pelvic neighborhood? Well, for one there’s the bladder. Sigh. I’ll save that for another post. Let’s just say, I hope I won’t have to become a double-bagger (n: Bag peeps with more than one ostomy to manage.) 

It's a small, small world

Occasionally I run across one of my old daily calendars with events and appointments jotted down; or an address book from a decade ago. I'm astounded by how many activities I participated in and how many people I was regularly in contact with.

Since becoming disabled, my world has shrunk considerably. No longer do I have the energy to go out several evenings a week to hear music (or perform it), see a movie, visit with friends, go to a party or out for a meal. Most of my communication with friends takes place via email or Facebook - even a phone call seems daunting at times.

Truth be told, I've always been an introvert and a homebody - I love my alone time, and crowds can make me uncomfortable. But the physical limitations and fatigue factor have compounded this. Sometimes even thinking about going out where I know there will be a crowd is exhausting. Some of it has to do with access, especially if there are unknown factors -- will there be stairs? is the bathroom accessible? -- and some of it depends on my level of pain and/or fatigue in the moment.

I would love to be one of those inspiring disabled people who barrel through life no matter what - showing up at parties and dances, fearlessly braving the obstacles, their calendars full of activities. Right now, my calendar for the next two months shows my weekly choir rehearsals, semi-monthly ensemble rehearsals, my weekly workout session, a therapy appointment, and one outing with friends. It is enough.

What makes me saddest about this dearth of activity is the lack of dates Laurie and I have. We used to go out often for meals, to lectures, movies, and concerts, for walks. Nowadays it's takeout and a streaming movie for date nights. Laurie often goes out with friends now instead of with me. I'm glad she feels free to do that - it isn't fair that we both be restricted by my inability to have a larger life.

This post is mostly for my own observation. I'm not feeling sorry for myself -- my life is quite rich with what I am able to do, and in spite of pain and disability, I'm a happy person. I think a certain amount of social shrinkage is normal as we age; but it has taken me a bit by surprise, especially when I see it in black and white on old calendars.

And I really hope I have not planted an ear worm of It's a Small World in your head.

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: