What I Didn't Do on My Summer Vacation

Learning to row; sisters and cousins

When I was a kid, we spent summer vacations at Hunter Point, an enchanted beach near Olympia on Puget Sound: pristine sandy shores; views of forested islands, Mt. Rainier, and the Olympic mountain range; acres of woods to explore. From the moment we arrived to our tearful departure two weeks later, my sisters and I played on the beach or in the frigid water, swimming, rowing, water skiing. Beach fires in the evenings, fishing in the mornings, we lived by the rhythm of the tides.

Hunter Point cabins

The cabins were funky and old and smelled of mildew, the water tasted of iron, we cooked on a wood stove. The beds, when we slept inside, were thin mattresses on squeaky metal springs. None of that mattered, we were blissed out.  We ate Dungeness crab, caught on a rusty oven grate using bullheads for bait; buckets of butter clams, dug early in the morning on the far side of Squaxin Island; flounder and sole brought up from the kelp beds using sticks and string ; and the occasional trout or sea-run cutthroat, caught casting from shore. We rowed old wooden boats to uninhabited islands and explored their woods, creating stories about who might have lived in the crumbling cabins; we found treasures of broken bottles and old leather boots and collected endless jars of stones and shells.

On Squaxin Island with sisters and cousins.

Back home, after weeks of shaking out blankets and washing clothes, the sand and salt and wood smoke smell would finally disperse; but our memories of the beach remained indelible, never far from the surface.

So I was excited when my sister Nancy discovered a place on Orcas Island that had an ambience similar to Hunter Point: funky old cabins at a sandy beach’s edge, views of islands and expanses of water. Laurie and I planned our trip for months. I pored over old family photos and rummaged through memories of our many beach trips. I remembered collecting tiny shells and stones from the tideline, and digging clams and geoducks at low tide, the smell of beach fires, of early morning salt air. In retrospect, I wanted to relive those carefree times and foolishly dreamed that this trip would be all that.

North Beach, Orcas Island

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Reality: when we finally arrive at North Beach after an arduous journey, I am in such pain I can hardly move for the first couple of days; I’ve had to walk a lot more than I’m used to and it takes a toll (new appreciation for the wheelchair!). Reality: the funky old cabin has no comfortable place to sit, and the couch is so low the view out the window is obstructed. Reality: the ground is rough and rocky and my scooter won’t go beyond the bit of grass that stops twenty feet from the beach; there is a tall berm so I can’t even see the beach-proper, let alone be on it. Reality: there is a burn ban and we can’t have a beach fire or even one in the fireplace; no wood smoke fragrance will follow us home.

Reality: I am crippled and getting older and cannot relive my childhood.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I want this trip to be more than a reminder of all I cannot do.This requires being in the moment, an acceptance of what is, and creating new ways of doing trips and vacations. And letting go of expectations. (The definition of expectations: planned disappointments.)

Laurie is content to read through her stack of books; she has no need to be out doing and going, she appreciates this utter silence and these long vacant hours for reading and resting. I am also mostly fine with this; yet I yearn for an evening on the beach, to sit on a blanket on the sand, watch the fire curl and flare, count shooting stars, tell ghost stories, sing silly songs, have sandy hot dogs. 
And s’more. 

Hunter Point: Dad teaches us to lay a beach fire
(Thanks for sending the old photos, Nancy!)

Gone to Ground

[Urban Dictionary: ‘gone to ground’ = To take evasive action in order to avoid further attention. To "lay low."]

My therapist suggested I write this post for a couple of reasons: 1) Writing is a good creative outlet for me and can serve as a catharsis (aka emotional dump); 2) it’s a way of letting my peeps know what’s going on with me without having to talk about me when I don’t feel up to talking about me (aka I’m sick of myself).

It’s become increasingly difficult for me to be in groups, to go to events, even to visit one-on-one or talk on the phone. It’s a bit of a vicious cycle: I don’t participate and so I don’t have anything interesting to talk about, and I don’t have anything interesting to talk about, so I don’t want to participate.

Pain and pain meds still conspire to keep my energy ebbing most days. I’m content to stay home and bake or watch cooking shows or do crossword puzzles or spend far too much time on Facebook watching Donald Trump melt down. I did get my studio arranged so that I can do some collaging, another good creative outlet. But I haven’t been spending much time with my music lately, just a bare minimum with my ensemble, Tapestry. It mystifies me why music feels like such a chore these days.

Choir rehearsals start again in a month, and I still need to decide if I’m going to sing this term. It feels daunting  – not just the physical difficulty of getting and being there, but it is an emotional drain as well and can include a lot of conversations about how I am and what I’ve been doing (see paragraph 2).

Don’t get me wrong – I love my friends and family and music pals to bits. I miss them. I am blessed to have such rich relationships. But guess what? When I’m not available those relationships suffer. I let people down by not responding to calls or emails, by not initiating contact, and I let myself down by not having the pleasure of their company, which always turns out to be so nourishing.

 

And then! I have to fight the shame and guilt, and another vicious cycle is unleashed.

Some of this is related to still getting used to being in a wheelchair 90% of my mobile hours. Some is the very real possibility that it may soon be 100%, as the nerve damage seems to still be progressing. There is ongoing grief about all that I (rather we: I have to include Laurie here) have given up: I would kill for a walk on the beach or a hike in the forest; I would love to dance again; to go out to dinner or a concert without having to worry if I’ll be able to access the venue.

When can I just ease into acceptance? This is the new normal after all – for now.

So I would ask this of you, my dear friends: When you see me, I may not want to converse much. Please don’t take it personally. I need to reboot my life, which means this hiatus may go on a while longer. If I want to talk about how I’m doing, I will, but know that I might decline. I’d rather hear about you, or commiserate about the train wreck of an election we’re witnessing - and maybe cheer a little about having a woman president!

Laurie and Liza and I will be spending a week on Orcas Island at the end of the month. I’m excited at the prospect of looking out over calming waters and of having no internet access for a week - unplugging will be good for me once I get over the shock of it! Sounds like a good recipe for a reboot. 

Life in the Chair

I can’t believe it’s been almost four months since the arrival of the wheelchair! It has been a time filled with adjustments, grief, exploration, humor, and some abatement of pain and fatigue.

It took me quite a while to get used to driving the thing.The joystick is much more sensitive than the scooter tiller, and I had to have it adjusted in the first weeks lest I go flying off the front porch. I still get frustrated when I bump into door frames or drag an electrical cord (and everything attached) when it accidentally gets caught in one of the six (!) wheels. Fortunately, no animals or people have been harmed during the training period.

Gwenlyn and Nan adding the bling.

I’ve had amazing help and support through this process. Laurie, of course, has been a gem, willing to shift things around in the house to accommodate the chair, making sure there are clear paths, strategizing with me around threshold ramps and doorway clearances. My pals Nan and Gwenlyn showed up on day two with all manner of trinkets and bling to decorate the chair - because I must go in style! My awesome sister Nancy flew down from Bellingham for the day to give me moral support and help to strategize some details (she’s so good at that!). It was as if my dear ones knew better than I what an emotional impact this change would have on me.

And it hasn’t been easy. It’s great to not have to expend so much energy trying to stay upright and use just about every muscle in my body to ambulate across the room. But it’s a constant reminder of the losses, the inability to go for a hike or walk on the beach. It takes a lot of planning just to get myself out to the cottage in the morning and back in the house at night. And I do have a huge footprint wherever I go (which is kind of ironic!).

I’ve had to learn some new body mechanics with this experience. Since I’m always sitting, I have to turn my body in odd ways to reach for items on counters and shelves, to open or close doors, to pick things up off the floor. The first few weeks I had irritating pain in my shoulder blades and finally figured out it was from all the reaching and twisting I was doing. I worked with my yoga therapist on some different ways of moving and reaching and it’s improved, though I still have twinges and need to be mindful every time I reach for something.

The biggest challenge in terms of maneuvering has been in the cottage. I bake a lot, so I have to get myself and my chair into some pretty tight spaces, between the fridge and the cupboards and the island. Turning in that small spot has become an exercise in patience, one at which I don’t often succeed. The chair has an elevator feature that brings the seat up an extra six inches or so, which is very helpful for working in the kitchen. I have become adept at using and modifying tools; I’m quite the expert with the little grabber tool - I’ve even taken it to the grocery store with me to retrieve things off of high shelves. I still use my cane, not so much for walking, but for grabbing doors and gates to open or shut them or for popping on or off a light switch.

I’ve been interested in the difference between the chair and my scooter when I’m out in public. I've discovered that I don’t like being out on the street in the chair – I feel much more vulnerable without that front piece protecting me, like a breast plate. Maybe I project the vulnerability, because I sense people react to me differently. The scooter is sporty, I can have a sense of play on it more so than with the chair, which feels more medical. So for the foreseeable future, I’ll have the chair for indoors and the scooter for out, which feels a bit bourgeoisie – not to mention the outside and inside walkers and a collection of canes strategically placed around the house. This is when I start feeling blessed and wonder and worry about those who don’t have access to all these wonderful tools.

And has the chair done for me what I hoped it would? For the most part, yes. I have a definite reduction of leg pain and fatigue. I still have quite a bit of neuropathic pain in my feet and legs, but most days it is better than what it was. My arthritic knees have gotten a rest! And that balance of movement I’ve been concerned about? Could be better, especially since my trainer has been out of commission for several weeks with an arm injury. But walking has become so difficult now, I’m concerned that the day is not too far off when I won’t be able to walk at all.

And then it’s back to the strategizing drawing board.

Finding Balance

We are preparing for The Chair to arrive on Monday. After months of talking, planning, consulting, waiting, and waiting, it has been approved by Medicare, customized by Nu Motion, and will be delivered in two days.

We’re still dealing with some logistics – the front door threshold needs a small ramp, as does the cottage door. We’d been planning on having our handy man Tom build something for us, but he’s not available this week. Then I found some ready-made ramps in a catalog; I called around town and located just what we need, and I can get them by Monday. We also had to find out if the chair was compatible with the power lift in the car and arrange to have a piece attached to the new chair so the lift can, well, lift it.

And then there’s the emotional component. I am nervous. I’m feeling a little defeated. I’m sad that it’s come to this. AND I’m grateful I have this option available to me and that Medicare is picking up the tab for most of it. I’m sure I’ll be dealing with a lot of emotions over the next few months. But as my yoga therapist reminded me, it will allow me to conserve my energy for the things I love to do and the people I love to be with.

I’ve had a sore knee all week, the result of arthritis and possibly a strained ligament. I thought at first it was a torn meniscus, but since it’s improved somewhat, I doubt that it is. For a couple of days, though, walking was darn near impossible and I wished I’d had the chair right then.

One issue that is of concern having this chair is making sure I still get enough exercise to maintain muscle mass in my legs. I’ll still be walking some; I’ll still have my weekly sessions with my awesome body coach, Shawn, and with my yoga therapist, Leigh; I have an order for some PT sessions for my knee. The key, as in most things, is to find the right balance. A lot of leg movement causes the burning nerve pain that is so unpleasant; too little movement makes for weakened muscles and strain on my joints. It’s an ongoing challenge.

I remember when my dad was getting so crippled up and had a difficult time walking very far. His doctor refused to sign off on a scooter because he thought Dad wouldn’t get enough exercise if he relied on a scooter. I was furious. From my perspective, having a scooter opened up my world so much; without it, I would be housebound. It’s possible to find that balance.

Leigh suggested I do a ritual or ceremony before the scooter comes. I used to do a lot of that sort of thing around transitions; I was very much into the power of woo-woo. So I will be giving that some thought today and tomorrow. Wish me luck.

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.