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!

---

*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

New Senior RV

My son sent this photo to me this week. I especially love the flat screen TV in the RV.

I thought it was a joke, but apparently not:





Let's go camping!!!

Adventures Were Had

September 9-12, 2011.

Adventure #1: Friday morning, I get a call from Chris at All in One letting me know all three boxes are on the UPS truck, due to arrive at the shop by 10:30 – can I get there soon for the lift installation? It’s the call I’ve been waiting for, since everything else for the weekend hinges on whether the scooter lift gets installed and whether I’ll spend the better part of the day at the shop while it’s getting installed. I go prepared: iPod, book, laptop, sandwich, water, cell phone and lists of calls to make. I know that they have a big screen TV in the waiting room and I also know that the US Open tennis tournament will be on for the duration. I have my choice of scooters, walkers and wheelchairs to get around the store and could even grab a nap in one of the big recliners if I want. Home sweet home. Well, these people have gotten enough of our money the last couple of months, we’ve paid our rent.

Around noon I realize that the Element is still in the front parking lot. Wtf? Chris explains that the regular UPS driver was off and the sub didn’t have the route down so absolutely set-your-watch-by-him punctual, so the parts didn’t arrive until 12:30. We discussed many options, one which involved leaving the Element and using one of their rental vans for the weekend. Since we're traveling to Eugene that evening, that option isn’t very appealing, but we start the paperwork. Then one of the techs comes up front to say he thinks he can get it done by the end of the day so, even though I had other places I was hoping to be, I tell him to do it.

My wonderful sister-in-law Bonnie is passing through town, so she stops in and takes me to lunch. What could have been a nerve-wracking, frustrating day turned out to be pretty darned pleasant. I was on my way home by 4:30, lift installed, ready to roll with my new scooter in back, hooked onto the new scooter lift.

Adventure #2. Saturday: Laurie is teaching a class all morning at Lane Community College in Eugene. We’ve stayed at an upscale Holiday Inn but had to leave early to get to the college, so no breakfast. We both assume there will be edibles at the classroom or in another building, but we come up pretty empty. I feel panicky, I need food and coffee, it’s going to be the hottest day of the year, there is loud construction all over the campus and I’m stuck here for a few hours with Liza in tow. I’m grumpy and snappy (and dopey and sleepy…) and wish I could just drive home, but I talk myself out a complete meltdown and scoot off with Liza to explore.

Click for larger view; more views on my photo blog:
http://teelgeephotos.blogspot.com/

I am not disappointed in what I find. There are gardens and many fantastic pieces of public art everywhere. The first sculpture I come across – Living Vessel by Devin Laurence Field - is a photographer’s wet dream: stainless steel polished to a mirror surface, shadows, reflections, cut-outs, an amazing juxtaposition to trees and water garden. I could spend hours right here, just photographing this piece. My mood has shifted completely and I spend the next few hours blissfully scooting around campus discovering more art and gardens. Liza is a perfect companion - she stops and starts with me over and over with no complaint. I end up with a few hundred photos, and the adventure ends just as the day is beginning to get unbearably hot.

Adventure #3. Monday morning, back home,. The battery indicator shows that the scooter is still about 80% charged so Liza and I take off on our long route scoot/walk. When we’re about half way to the park, the scooter slows slightly, then crawls, then comes to a stop. When I try to move it, it emits an annoying series of beeps that I’ve come to understand is scooter-speak for “you’re fucked.” I’m far enough away that walking home is impossible – I can only manage a block or so these days and I’m probably eight blocks away. It might as well be eight miles. I happen to be in the vicinity of a couple of young women with several children and two strollers, so I do one of the things I’ve come to do so well – ask for help. If I can get a ride home, I can bring the car back to pick up the scooter. One of the women lives several blocks away; she tells me it will take her “awhile” to walk home and load her kids in the car so they can come back to get me. I gratefully accept and tell her I’ll wait (as if I have a choice) and if I make any progress, I’ll still be on Lincoln Street. I watch the troop amble eastward, about as fast as you might expect, which at that moment seems like a herd of turtles. I begin to regret not taking the offer of help instead from a woman who came out of her house when she heard the beeping and saw the commotion.

I manage to limp the scooter another couple of blocks – if I turn it off and sit awhile, then turn it back on, I can get ten or twenty feet further along. I discover that, for some reason, it runs longer in reverse, which is somewhat confusing to Liza and probably pretty bizarre to any neighbors who may be watching. But I don’t want to take a chance on having it die in the middle of the street, so I hunker down and wait. And wait and wait. After what seems 45 minutes I decide I’ve been abandoned; I eke another block out of the scooter, then decide I can probably make it the few remaining blocks on foot. It’s not easy, and I’m on the verge of tears all the way home – tears of pain, of helplessness and frustration.

When I return with the car, Lessie, who lives nearby, comes out to see if I need help. Once again, the kindness of strangers touches me deeply, and my belief in humanity is restored. The scooter loading goes smoothly, considering I’ve only done this a couple of times, and Lessie and I talk about our dogs and decide a play date is in their future.

Of course, I'm wigged out about the new scooter not working, so I pore over the owner's manual. My best guess is that the deep cell battery has not acclimatized yet. It needs a few cycles of running and recharging to get it acclimated, so that's what we do.

I've had several scooter/walks (scwalks? squawks?) with no further adventures of this caliber. And I now take the cell phone with me, complete with neighbors' and taxi companies' numbers programmed in. It wouldn't be an adventure if we didn't learn from it.

Ten Years After

September 10th, 2001. Late afternoon. I am still groggy from the sedative they’ve given me for the colonoscopy, but I grasp the seriousness of what the doctor is telling me. “It’s a mass in your rectum,” he says. “We won’t know for sure until the pathology report comes back, but I’m 99% sure it’s cancer.” As I’m trying to absorb this information, Gwen arrives to drive me home. She can tell by looking at me; we don’t speak on the way to the car. We don’t need to.

I’m tired when I get home. I make a couple of phone calls, but I’m keeping this close to my vest until I have all the information. I pull out the papers I’d started working on a few years before for my will - I don’t really think it’s a death sentence, but I’m taking it seriously. I have a little bite to eat and go to bed.

When I wake I’m surprised that I’ve slept through the night, but I’m in a daze and need some comfort, some normalcy, some reassurance. I check email; my sister Jackie has sent a cryptic message, something about being grateful that no one she knows is flying that day. I’m puzzled, but Jackie is always the first to have the news dialed in, so I turn on the TV. And the newscasters are saying this: “We are under attack.” I watch the images over and over, stunned. In those moments, I can’t make sense of what is happening in the world, and I can’t make sense of what is happening in my body. It is all too much – I collapse in a heap on the couch and weep and weep.

Even though I’d planned to take the day off, I decide to go into work. I can’t bear being alone in those hours – the hours of not knowing if there is an all-out war being waged on the US or if the four planes are it; the hours of not knowing if my diagnosis is terminal; the hours of wondering what is in store in the months to come, for the country, the world, my body.

After the initial shock, I am convinced that this thing will not kill me. I meditate on the tumor and it comes to me as a small, scared animal that is lost. I give it permission to leave and tell it I will help to find its way out.

The pathology confirms the doctor’s opinion; diagnostics stage it at IIIC T3. I am immediately thrust onto the treadmill that is cancer treatment protocols, and I quickly learn more about it than I ever wanted to. It’s a year of non-stop medical appointments, diagnostics, surgeries, chemo, radiation, more chemo, blood work, more diagnostics, injections – plus my own chosen protocol of naturopathic medicine, acupuncture, homeopathics, herbs, guided meditation, counseling, all manner of woo-woo, support groups, nutritional guidance and supplements.

The kindnesses that come to me from family and friends are overwhelming. I am cooked for, transported to and from appointments, sung to, held. My sister Nancy spends two weeks with me post-surgery. A beautiful quilt is made for me by many hands; prayers are said, songs and poems written, healing rituals performed. People at work donate vacation time so I can take the time off I need to recover from surgery. It is a profound time, a time to test my mettle and my faith, to let go and trust, to learn to ask for help when needed and accept it when offered. Above all, I learn how well I am loved.

~~~~~~~~~~

The long-term effects of the cancer treatments begin to show up almost exactly five years later. Five years – the milestone, the objective. If a cancer survivor makes it five years from diagnosis, she is considered to be out of the woods. She has achieved the goal! She is cancer-free. N.E.D. = No Evidence of Disease. But there are consequences. The trade-off for surviving, apparently for me, is a diminished quality of life – “diminished” being a relative term. There are many things I can still do, but there are many I cannot, and it’s necessary to make major accommodations to our home and our lives. I tell people: This is the price I pay for still being on the planet.

And as I think about today, ten years after, the blessings I’ve received, the richness that is my life, it is a price I gladly pay.

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

I wrote this song toward the end of chemo treatments when I came to know that blessings and challenges often come from the same place.

Grit and Grace
© 2001 Terri Grayum

I’ve been picked up and tossed around by the winds of my life
Winds that blow strong through the night
When the hurricane blows and there’s no place to go
I just hold on ‘til the morning light
Oh it’s the same wind that brings the first breath of spring
And carries songs that the river sings
And the great eagle soars over wild rocky shores
On the same wind beneath her wings

All the tears I have cried when my faith has been tried
Gather in waters so wide
And the floods that come down tear the roots from the ground
And bring down the mountainside
The same water flows where the ancient trees grow
And quenches the thirst of the earth
And washes me clean in the sacred stream
Of the waters that bring rebirth

A test of our faith wears more than one face
Sometimes it’s grit and sometimes it’s grace

I’ve been burned by the flames of hatred and shame
Sometimes I don’t know how to trust
When the wild fire burns, the forest returns
Her bounty to ash and dust
The fire that ignites on the darkest of nights
Is the love burning bright in my soul
And the flame lights the way to the joyful day
When the Spirit makes us whole

A test of our faith wears more than one face
Sometimes it’s grit and sometimes it’s grace

Oops

It was bound to happen. Feet - hands - brain - disconnect. Steep driveway -- backing up -- panic.

It looks something like this (actual damage may vary):

The garage door belongs to Gwenlyn's brand new landlady. No people were injured in this event. The Element is fine. Thank the good goddess for insurance. 

Progress Report

After several delays for various reasons (bronchitis being one) I finally got the spinner knob* installed on the steering wheel. It has made all the difference! I don’t know how people can turn the wheel one-handed without one. So now I am officially driving with hand controls! (My constant mantra: “Down go, forward stop, down go, forward stop.”) I’ve made a half dozen trips around town using them exclusively, including one through the car wash – not easy getting lined up on those narrow tracks! The only thing I haven’t tackled yet is parallel parking. I started to do it once and chickened out. I just don’t have the finesse yet that it takes to ease the car into a narrow spot with obstacles on both ends. Anyone want to volunteer their cars so I can practice?? I did well with one incident when I had to hit the brakes in a hurry – I don’t think I even lifted my foot.

I realized that Laurie will also have to figure out a new way to do her phantom braking in the passenger seat.

*A little more history on the spinner knobs: besides "suicide knobs," they’ve also been called “necker knobs” – the driver could use one hand to drive and the other to feel up the passenger – and “titty bangers,”  for obvious reasons.

We ran into some issues with the scooter lift for the Element. We decided early on against an exterior model because of the extra length on the back of the car (I would never parallel park!) and the weather issues. Turns out the power lift we thought would work (“we” meaning us and the
salesperson at All-in-One Mobility) won’t work with the tailgate, so we have to spend an extra thousand bucks to get one with a telescoping lift head. Disappointing, but it might be best in the long run. The manually operated one might have been difficult to manage in the years ahead. This one should be really easy for me to operate by myself so I can be independent when I want to take the scooter out on an adventure by myself.

And speaking of scooters –while we’re spending all this money, we decided to go ahead and upgrade the scooter, as the current one has developed some electrical problem that would cost more to fix than we feel is worth it. So I’ll have a brand new scooter when the lift is installed (within a couple of weeks). Now Liza won’t be able to keep up with me! The current scooter has been slowing down – yesterday I wasn’t sure I’d even make it home, it almost came to a standstill a couple of times, on ½ a charged battery. The new scooter also has a higher ground clearance, which is really important to me on these bumpy sidewalks (I’ve gotten high-centered a couple of times), more ergonomic accelerator, more leg room and- the real selling point -interchangeable panels, so it can be blue one day, red the next and silver another day; so important to color-coordinate my scooter with my attire, you know - fashionista that I am.

Scootography

I love taking photos - of flowers, birds, kids, odds and ends. I started getting serious about photography 3 years ago, just before I retired and then was gifted with a really nice Nikon camera. I was out taking photos every day, wandering all over town: at the riverfront, on the tram, in junk stores, at the carnival after hours - I even took photos inside the car wash one day! I posted on my photo blog almost every day.

And then I stopped fairly abruptly when it started getting too difficult to get around. My balance got so bad that I couldn't steady the camera unless I was sitting down. The walker helped but I couldn't go very far, and I can only take so many photos of the irises and columbines in our own yard. It was pretty depressing - I need creative outlets.

Enter: The Scooter. And Scootography was born. Not only has my range vastly increased, I'm already sitting, so balance isn't an issue. And I'm often eye level with the subject I want to photograph - bees, for instance (you can click on all these photos for a larger view).

Our neighborhood and the ones surrounding us are wonderfully colorful and quirky - not many groomed lawns and arborvitae hedges around here - so I have an endless supply of material to work with. And as soon as I get that scooter lift installed in the Element, the world will be my oyster!

Here's a sample of today's scootography:

Dahlia

Dahlia

Nasturtium

Rose of Sharon - how perfect is that center?!

Black-eyed Susan

I love being back behind the lens! 

My photo blog is here - I haven't posted very much to it lately, but it too will be back in business soon. 

Parking Privileges

Yesterday a crew from the city came to repair the parking lines in front of the house. I called in a couple weeks ago because the strips were worn off and were tripping hazards in a couple of places (they don't paint the lines, they use an industrial tape).

And I realized what a privilege it is to have this dedicated disabled parking spot right in front of our house. Not that it's MY spot - anyone with a disabled placard can use it, but that's only happened once. When we had the addition built on the house, we gave up off-street parking. We're close enough to Hawthorne that weekend parking can be a premium, and there were nights we'd have to park a block away from the house, which is aggravating for a person with mobility challenges.

I called the city a year or so ago to inquire about residential disabled parking spots - I'd seen them on other streets but didn't know what the process was to get one. Turns out, it's fairly easy. I sent them a letter explaining why I needed it and included a photocopy of my disabled parking permit. A few weeks later, a crew showed up, put down the strips and installed a sign. They didn't even ask where we wanted it, but they put it exactly where I was thinking it should go. And it didn't cost us a dime.

The crew of four (yes, four!) who came yesterday to repair it were quite entertaining for the three-year-olds who were here - OK, for the adults too. (Of one of them, Ms. P remarked, so all the neighbors knew, "He has a Mohawk!") First they blow torched the old tape off - showy! - and then laid down the new and rolled it flat. They were done in a matter of 15 minutes.

And they were a full-service crew. One of them helped round up Liza who, in all the excitement, made a break for it out the front door and pranced up to 38th and beyond. Apparently it was past time for her daily walk.

I don't take for granted the privilege of a disabled parking permit, allowing me to park anywhere for as long as I need for free, and usually getting me pretty close to the entrance of any store or business I'm going into. And this parking spot is a gift I don't take lightly either. It's another one of those things you can't appreciate until you need it yourself.

Last week, Gwenlyn added this sign to my special parking sign. Sadly, someone walked off with it before I saw it.

What Does "Accessible" Mean to You?

We just returned from a trip to Washington State where we stayed in a hotel for a couple of nights. When I made the reservation, I decided to book an ADA room. (ADA = Americans with Disabilities Act – guidelines and laws that must be adhered to by businesses to a greater or lesser degree.) I did this mostly for the bathroom accommodations, which include grab bars and a shower or bath with some helpful accessories.

So imagine my surprise when we discovered the very narrow space between the beds and the desk and dresser. Had I been in a wheelchair, I wouldn’t have been able to get through that tight spot, which led to the refrigerator. And to the microwave sitting ON TOP of the refrigerator cabinet. And to the coffeepot sitting ON TOP of the microwave. Because I can stand, I could reach the coffeepot (a good thing, or heads would roll), but if I were unable to stand, I’d have been coffee-less and eating cold oatmeal. There was also the matter of the bathroom floor, which was very slippery.

Yesterday I received an email from the hotel asking me to take a survey to rate my experience. Boy howdy! I rubbed my hands together with glee. The rest of our hotel experience was pretty pleasant, so I didn’t have to give them all negative feedback, but In the comments section, I wrote pretty much what I wrote above. Here’s the response I got:

Thank you for taking the time to tell us about your experience at the Lacey xxxx. I am sorry that your stay did not meet your expectations; please allow me to express my sincerest apologies.

Terri, it is extremely difficult to know or anticipate exactly what a person might require of an ADA room. A person with a hearing or speech issue would certainly have no problem with the location of our microwave or coffee maker; whereas a person in a wheel chair might. I do like your idea about "test driving" our room with a wheel chair. My mother-in-law has one...and I do believe I will bring it in and check our room layout.

Your satisfaction and continued trust in xxxx Inn are our top priorities. We look forward to showing you that we are working hard to make sure each visit meets your expectations and our high standards.

Sincerely,

General Manager
xxxx Lacey

Well, I do appreciate getting a somewhat positive response so quickly. I found his comment about what different people might require of an ADA room a little odd though – true, a deaf person wouldn’t have trouble with the location of the microwave, but seriously? To have not considered how a person in a wheelchair might get around in the room seems a bit off-putting and not a genuine attempt at making the room accessible. I haven’t researched it fully yet, but I’m pretty sure that if they’re calling it an ADA Accessible room, it has to meet certain criteria.

A few weeks ago, Nan and Gwenlyn and I went for a walk in my neighborhood. (And by walk I mean they walked and I scooted.) Gwenlyn gave me a hard time at first when I whipped out my notebook and made a little map of which intersections didn’t have curb cuts. But after a few blocks, she got it. When we came to an intersection without one, I had to go as much as half a block to find a driveway I could use to get into the street, then scoot up the street to the intersection or to another driveway across the way to get to the other side. “I had no idea,” she said. Well, most of us don’t until we’re faced with it.

My pals suggested I get in touch with the city to see if they have a map of intersections in my neighborhood with curb cuts. I did and they do – or at least, they graciously put this together for me.

Unfortunately, I need a magnifying glass to decipher it, and even then only the major streets are labeled. So it’s back to my own drawing board as I travel the streets and make notes. Maybe I’ll write my own scooter guide, something along the lines of Walk There! 50 treks in and around Portland and Vancouver. Perhaps Scoot There? Roll There?

My point being, in this long winded diatribe: I’m sure people’s intentions are good, and prior to my own experience, I was just as unaware as the next person of what it’s like to require extra space or a curb cut or coffee gear within reach (seriously, don’t mess with my coffee!). We’ve come a long way in this country toward making areas accessible to people with disabilities, but I think we can do a lot more. As an example: there are disabled parking spots in front of our neighborhood library – yea! – but no curb cuts for a wheelchair once it’s on the ground – a person would need to wheel in the street to the nearest driveway. I realize a lot of these things require money, but some of them just require common sense.

Here's an idea:  a dedicated day when everyone uses a wheelchair or scooter for 8 hours. I think it would be a real eye-opener.

Look Ma! No Feet! (or Learning to Drive with Hand Controls)

Yesterday was a big day: I had hand controls installed on the new rig. Yet another step on the disability path. My dear friends Gwenlyn and Nan went with me, partly to keep me company during the four hour installation process and partly to be my support team as I learn how to drive in this whole new way.

It’s appropriate that Nan was along on this venture, since she was a passenger in my car the night it became evident that I needed to think seriously about hand controls. (Her fingerprints can still be found embedded in the back seat of the Saturn.) We were leaving a house concert late at night; I was driving down the steep driveway onto the steep gravel road and thought my brakes had gone out – they weren’t responding to my repeated foot pressing. About half way down the road I realized that my foot hadn’t even been on the brake but somewhere to the west of it. The lack of feeling in my feet due to neuropathy had manifested one of my worst nightmares.

After our heart rates had returned to an acceptable level and we thanked goddess no one had been in the road, we discussed my options, Because Laurie doesn’t drive, if I become benched, getting around would be extremely challenging. We can't afford a chauffeur, so the next day Laurie and I started investigating hand controls.

As soon as we bought the Element, I made an appointment for the installation. I knew there would be a bit of a learning curve – after all, I’ve been driving with two feet and two hands for 43 years – but I was assured that it was pretty easy to catch on. What I didn’t think about was that my left hand will be on the combo accelerator/brake lever and unavailable for other duties, so I have to steer with just my right hand. This is not an easy task! Plus there are so many other things I need to be doing with my hands – tuning the radio, adjusting the AC, petting the dog, drinking water or coffee – and how the heck am I supposed to parallel park???

Remember the old steering wheel spinner knobs from days gone by? Did you know they’re illegal in most states now unless you’re a disabled driver? (They’re called suicide knobs now, apparently for good reason.) I remember picking one up at the auto shop and popping it on the steering wheel. Now I will need a doctor’s order and a chunk of change to get one installed, but it will make it so much easier to turn the steering wheel one-handed.

I spent about 20 minutes practicing in the parking lot after the installation was complete. Then I felt (sort of) ready to get on the road with Gwenlyn as my co-pilot (and kudos to her – I didn’t see one white knuckle or hear one “Oh Shit!”). I decided to stay off the freeway and drove a comfortable 35 mph most of the way home. It was a mostly uneventful trip - even though it was rush hour -  and I got the hang of it, but don't yet feel confident that I could handle any driving situation.

We have a road trip this weekend. I still have the option of using the foot pedals and I may opt to do that for this trip and get more practice in empty parking lots. The experts say that once you've decided to use the hand controls, it's important to commit to it and not switch back and forth. Today I'm feeling a little commitment phobic.

And now a little promotional message: If you're in need of any mobility products, I highly recommend All-in-One Mobility. They know their stuff and they are wonderful to work with.

Oui, We Wii

I’ve had a Wii tucked away for a while now. I got it last fall, thinking it would be a great way for me to get some exercise at home in an entertaining way. I’m not a gym type AT ALL, and finding any kind of exercise that keeps me interested and motivated has been a lifelong challenge. And now that my mobility is so compromised, it’s even more of a challenge. There’s the warm water therapy pool that I can’t seem to get myself to; there’s chair yoga, but every time I do it I grieve for the wonderful yoga sessions I used to have when I could stand and balance and get up and down from the floor without major assistance, so I end up in an emotional puddle half way through each session.

When I first got the Wii, I set it up and tried out a couple of games. Bowling was fun and gave me a bit of upper body exercise and some balance challenges. Then I chose tennis. I went through a period twenty (or was it thirty??) years ago when I played a lot of tennis and racquetball and loved them to bits. I was even pretty good at the racket sports. So Wii tennis it was. I played a few games, being careful to strap the remote to my wrist so it wouldn’t go flying across the room. Liza was very curious about what I was doing and nudged closer and closer to the edge of the couch. I was getting good! And then SMACK! with a brilliant backhand I hit Liza in the face with the remote about as hard as I could. She let out a yelp and cowered in the corner, crying, in obvious pain. I thought I must have broken her jaw or at least knocked some teeth loose. I was devastated. I think I was more traumatized than she was; I held her and sobbed. Laurie had to comfort me (though she was confused at first – when I told her I’d hit Liza she thought I meant Liza’s Wii avatar, not the real dog!). So every time I thought about a Wii session, it’s triggered a bout of PTSD. At least that’s the excuse I’ve been using. (Liza was fine, by the way - I'm sure she had a headache, but no lasting effects. Although, brain damage could explain some things....)

Due to some rearranging in the cottage, we got rid of our clunky old TV and bought a new flat screen, the idea being it’s fairly portable, we can use it in the house or the cottage, and it’s just right for the Wii. The first week or so I was delighted to be able to view Netflix movies by streaming them through the Wii. Laurie asked me every few days how it was going with the Wii (she frequently encourages and subtly prods me to exercise). I’d run out of excuses. I pulled out the discs, dusted them off and played a few games of bowling, baseball and yes, even tennis. (Liza curled up in the corner of the couch, far away from me and my antics.) There’s nothing really skillful involved in these games, but it does give me some upper body exercise – I can do them sitting or standing. But I can see how losing interest in these games wouldn’t take very long.

Enter: Wii Fit, which includes a balance board and four training modes: balance games, aerobics, strength training and yoga. The board, which you stand on while doing the body tests and exercises, "talks" to the Wii console to measure things like BMI, actual age, weight, balance and posture. I had some trouble with the initial setup – it kept asking me if I was fidgeting while it was trying to get a reading. Fidgeting? No, that’s my normal way of standing. (I don’t think the Wii knew I was using a cane to stand either.) I was finally able to hold still long enough for it to get the information it needed. Then it put me through a battery of balance tests, which I’m supposed to do daily to track my progress.

I was exhausted by this time, so haven’t gone on to do any of the actual exercises, but I’m looking forward to that hula hoop! I was curious if there was information about using Wii with disabilities. I was happy to find these posts by a woman who has some direct experience with it – she explains some of the limitations and demonstrates modified exercises with the balance board.
http://flashsays.com/2011/02/02/wii-fit-disabled-part-1/
http://flashsays.com/2011/02/02/wii-fit-disabled-part-2/

I think it would be really cool if someone developed a Wii disc specifically for people with disabilities.

It's Elemental

Car shopping is not what it used to be. It’s still near the top of the list of things I’d rather not be doing (somewhere between moving and prepping for a colonoscopy) but the internet has made it so much easier than it used to be. There’s Consumer Reports online to do some initial comparisons, all sorts of sites for professional and consumer reviews, and even some sites that will check inventories to find what you’re looking for within a specified mile radius (e.g. Edmunds) – just plug in the criteria and voila! From there you can contact the dealer directly via email and (believe me) they’ll get back to you with specifics. The price is locked in. You go test drive and decide. Oh, they still sit you in their extremely high stim waiting area (which makes me want to run screaming out the door) and try to sell you extended warranties and windshield glazing and security systems and on and on. But if you go in strong-willed, you can just say no thanks to the extras and off you go!

And off we went! With a 2008 Honda Element: a certified used car with good warranty, low miles, great condition - even a color we both love! It’s so much easier for me to get in and out of than our low-to-the-ground Saturn, there’s tons of storage, it’s very solid and safe, and Laurie has her own cup holder! (Big selling point.)


Next steps: I’ll take it to our mobility shop to outfit it with hand controls and figure out the best ramp system for the scooter.

Ready for a road trip!

It looks good in front of our house!

She needs a name - suggestions are welcome!

The Search for the Perfect Car

For a number of reasons, the time has come for a new car. I’ve been driving my little ’93 Saturn for almost 10 years, and it has served me so well (thank you Dad and Jackie!!!). But we need a car that will be able to haul the scooter and the walker, one in which we can install a ramp or lift for the scooter, one that isn’t so low to the ground that I need a shoe horn to get in and out. And, well, my little Saturn is almost 20 years old.

I never dreamed I’d be looking at any vehicle that resembled an SUV – all those disparaging remarks I’ve made in the past are coming back to haunt me. But the small SUVs are really more like glorified station wagons; some websites call them “crossovers.”

Right now we’re considering, in order of preference:

• Honda Element
• Subaru Forester
• Ford Escape
• Honda CRV
• Toyota RAV4
• Hummer H3

(OK, kidding on that last one, just wanted to see if you were paying attention.)

I've heard great things about the Element, but haven’t been in one or seen it in action yet. According to reviews, it’s more truck-like than the others and noisier, but it is hands down the best for people with disabilities because of the way the doors open (low in the back, full double door on the side). I've had a crush on the RAVs since they first came out. Subarus and Hondas are so dependable. The Escape is a hybrid, which I've sworn would be my next car, but I’m not sure now it would be such a great choice, since I drive so little.

It's been many years since I've had to go car shopping, and I do NOT look forward to the process of dealing with car dealers. I refuse to play the games. Fortunately now you can do a lot of the work before setting foot on the car lot by locking in a quote online, even choosing a specific car on a dealer's lot. That's my kind of shopping.




Do you have opinions or suggestions?  Buy new or used? A favorite car dealer in the Portland area?  I would love for this to be a done deal in the next couple of weeks!

On the Bus

Another adventure in the exciting world of mobility travels! Today I got on the bus with the scooter for the first time, and it was so easy and kind of fun. Laurie said she was nervous, but I found it mostly entertaining, and we had great help. The woman in the photo, left, was a sort of greeter and helped me get the scooter situated, explained about the special stop signal that lets the driver know we'll need the ramp to get off and was a Portland-friendly kind of person. She figured out we were on our way to the Hollywood Farmers Market - markets are a popular topic of conversation in our city and she suggested a couple of others we could try out via bus.

Getting around the crowded market has been a huge challenge for me in the past, so we pretty much stopped going. The walker was helpful, but it was sometimes difficult on the uneven pavement. The scooter wasn't without its challenges - I had to be careful not to run over people's toes, and some of the stalls are pretty tight for maneuvering - but it was so much easier and way more fun. Plus I got to be on eye level with lots of yummy food and with little people in wagons and strollers, who are almost always fascinated to see a big person at the same level they are. (One of our three year old friends, on seeing some people being pushed in wheelchairs last week, asked her mom why all those old people were in strollers.) I try to engage with them and put them at ease, have a little fun, like asking if they want to race.

So now we have added back in another of our favorite activities. And we had enough energy left over to stop at Trader Joe's, go to a garage sale and visit with a neighbor on the way home.  Look out world, here we come!

SSDI Comes Through!

Feel free to pop the sparkling cider and celebrate with us tonight!

I was so bummed that I hadn't gotten a letter from SSI in today's mail giving me the official yea or nay. Decided to check my bank balance and there was a nice surprise, deposited right into my checking account. Thank you Social Security! Thank you tax payers! We'll do our part to stimulate the economy now.

On Death and Dying

Yesterday I was privileged to take part in a support group for women with ovarian cancer. The discussion was about end of life – decisions, fears, thoughts, emotions. It’s not an easy conversation topic, but these 12 women bravely shared their innermost feelings and supported each other through this discussion.

It made me aware of how far we’ve come in our culture regarding death and dying, thanks to people like Elizabeth Kubler-Ross, Stephen Levine and my friend Jan Selliken, who led the discussion yesterday. Jan worked for years as a midwife and OB nurse. When she was introduced to hospice work, she found a new calling and became aware of the similarities between the birth and death processes. (Jan's book, The True Work of Dying, is available from Amazon.)

When I was growing up, death was rarely discussed. Dying people were sequestered in nursing homes and hospitals, the dead were whisked away as soon as the event occurred, funerals were macabre affairs that had little to do with the deceased person. We owe a debt of gratitude to hospice and palliative care organizations for working to shift attitudes about death and dying.

Being almost ten years out as a survivor, dying is not a subject that’s quite as in my face as it is for the women in this support group (the issues of long-term survival are for another blog post), but one topic seemed to be common for all of us – the fear that our wishes about our dying and death wouldn’t be honored. Those things included:

• Having decisions made for us by those who are certain of what we want
• Having people around us during the dying process who we want to be there
• Honoring our wishes about what is done with our bodies after death and about the kinds of memorials or celebrations we want to have happen

Jan shared some great resources, including an example of Personal Care Directives. Similar to Advance Directives (which everyone should have on file), this specifies things like support people in the last weeks and days of life, people NOT desired at time of dying, pets to be nearby, comfort measures (that special quilt, music, readings, etc.), rituals before death. These are the kinds of things we rarely think about until the time comes, and the dying person may not be able to communicate these needs then.

Jan also made us aware of the Physician Orders for Life-Sustaining Treatment, or POLST, which is like Advance Directives on steroids. It doesn’t replace Advance Directives, but complements them by being more specific about the kind of life sustaining care you do or do not want administered.

My role in this amazing group yesterday after the discussion was to facilitate the creation of SoulCollage cards. I provided materials, gave them a quick demo of how to put a card together and in an hour, they had each created a remarkable piece of art. As our closing, each woman talked about the process and the product, and as you can imagine, the results were profound. Thank you all for sharing your hearts and spirits!
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On another note: I'm still waiting for the final word from SSDI. According to my online file, a final decision has been made and I’ll be hearing via mail soon. Maybe tomorrow? Fingers crossed!

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Pins and Needles

We’re waiting on pins and needles – which describes how my feet and legs feel a lot of the time, but now means something quite different. I’ve applied for Social Security Disability at the urging of a number of people in the know. It never occurred to me that I might be eligible, since I’ve already retired and am drawing on my retirement pension, but that doesn’t matter for eligibility. If one is deemed disabled and unable to work, one is potentially eligible for SSDI.

So we filled out a lot of paperwork, no small task. I had two different 8-page forms to fill out in addition to the online forms, and Laurie, since she is witness to my disability, filled out an 8-page form (she’s convinced that the teardrop stains on the form will get me approved). We expected to have to wait for up to four months to hear back. And we expected to hear that I would not be approved, because that apparently is the norm for most people who apply. There are a lot of avenues for appeal, and I fully expected to be going through appeals processes for a long time.

Last week I received a notice stating that I “meet the medical requirements for disability payments.” Wow. Knock me over with a feather (which is not hard to do, actually). But the next paragraph says “We have not yet made a decision about whether you meet the nonmedical requirements, but we will make that decision soon.” OK. So what are the nonmedical requirements?? From what I’ve been able to gather, it’s simply verifying my date of birth, my work history, SS contributions and marital status. That can’t be too difficult.

So we are just a bit short of celebrating – I can’t imagine the nonmedical requirements are a problem, but until that final letter is in my hands, I’ll hold off on the confetti and sparkling cider.

And then there is this: It is a validation of disability, which is a double-edged sword. It is good that physicians and government investigators agree that my physical difficulties are debilitating enough to deem me officially disabled: I get the stamp of approval. And now I come to terms emotionally with the fact that I’m declared officially disabled. It’s not that I didn’t know that, but now the government acknowledges it and will likely compensate me for it. What do I do with that? What emotional compartment does that fit into?

When I was going through cancer treatments, I read something about the terminology we use that can empower or defeat us. I tried never to use the term “my cancer,” since I was treating the tumor as an intruder in my body. It was important to me to not define myself by the cancer. Now I’m trying to figure out the terminology for disability. Am I a disabled person or a person with disabilities? The latter feels more appropriate to me. To say “I am disabled” defines me only in those terms. “I have disabilities” says that’s only part of the person I am.

These are big, ongoing issues I will be grappling with for a long time. I'd love to hear your feedback. Meantime, keep the cider chilled - I'll let you know when to uncork it.

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Let Me Count the Ways

I love my scooter.  For so many reasons.

1. I can go places I haven't been able to go for a very long time.
2. I don't have to drive the car to do my neighborhood errands.
3. Liza can walk with me at a speed she loves.
4. I don't have to concentrate on the ground under my feet for every step - I can actually look up at the world around me. Trees. Flowers. Cats. Beautiful houses. People. Art. 
5. People on Hawthorne who ask for money or signatures generally ignore me.
6. I'm eye level with children and often get a smile or at least an interested stare.
7. In general, people seem rather delighted by the scooter and are willing to help with doors or to reach something on a shelf in the store -- much more so than when I'm using a cane or walker. (I'm mulling the psychology of this - any ideas?)
8. I get to go meandering in Laurelhurst Park with my pals. I wouldn't have been able to get to this bench under the mighty oak without my scooter. 

If you or anyone you know have been debating whether or not to take the plunge and get a scooter, I will tell you what I said the first time I used it: "Why did I wait so long??"

I Love to Go A'Wandering

Today we’re celebrating Liza Day (2 years ago today, Liza came to live with us) – so we went for a hike! OK, a walk. OK, Laurie and Liza and our friend Emma walked, and I scootered. Still. It was a milestone since I haven’t done anything like this for a very long time. Getting out in nature is something I miss a lot, and it was nearly impossible B.S. (before scooter). Now we have to scout around for trails that are fully accessible (paved is best, gravel is OK, dirt won’t do at all if there’s any mud or mushy parts), but they are out there!

The Banks-Vernonia State Trail is part of Rails-to-Trails Conservancy, “a nonprofit organization based in Washington, D.C., whose mission it is to create a nationwide network of trails from former rail lines and connecting corridors to build healthier places for healthier people.” It’s a beautiful trail, relatively flat, cutting through farm land, wild flowers and forest for 21 miles (we did about 4), about 8 feet wide and paved with asphalt. It’s a great trail for family bicycling, walking and scootering.

I did have to make a few phone calls and had an email exchange last week with the parks ADA liaison because the rules specifically stated that electric scooters weren’t allowed on the trail - but motorized wheelchairs were - which made no sense to me. I got it sorted out - got permission to use it there and the manager said he'd get everyone on board with the policy. I’m quickly learning to advocate for disability issues and for myself.

Liza is doing a pretty good job of walking with the scooter. I thought we might need some special training, but she does well at avoiding the wheels and often trots right along beside me. Other times, she makes like a sled dog and “pulls” me down the trail.




If you have suggestions about accessible trails in the tri-county area, would you let us know please? We'd love to do more meandering this summer and fall!

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Doffing the Mask

Lest you all think that life as a person with disabilities has been a bunch of giggles, I have to tell you that sometimes it really SUCKS. I’ve gotten pretty good at putting on the mask of happiness and well adjustment in public – and mostly it’s genuine when I'm doing things I love to do  – but it’s been a damn bumpy road a good deal of the time. There have been frequent adjustments to our lives, from how often we go out, to having to make major – and expensive - accessibility changes to the house, to cancelling vacation plans.

Because my nerves are sending incorrect messages to the muscles in my legs and feet, the muscles are activated all the time (twitching and spasms), so I get fatigued easily. (Imagine if your legs never rested.)  Lately, because of muscle weakness and lack of coordination, I have difficulty even walking across the room. I’m often in a lot of pain (nerve and muscle pain). I fight depression almost daily.

There are many things I can’t do anymore, like work in the yard or do much around the house, which means Laurie bears a much bigger burden and I constantly fight guilt. She doesn't get as much of me as she used to. This isn’t what she signed up for – not that we can ever predict how that’s going to turn out, but we were hoping for a couple decades of more fun and less distress.

I can’t stand anymore when I sing, which feels unnatural! I will need hand controls for the car in the near future because I can’t always tell where my feet are. I have to sit on a stool when I’m cooking. If I want to do yoga - previously one of my favorite activities - I have to do it sitting in a chair. I used to pride myself on my balance poses.

Why am I telling you all this? Not because I want pity or sympathy or cooing words of comfort, but because I need to be completely honest about what it’s like for me to become progressively disabled. I need my friends and family to know what it's like for Laurie and me on a daily basis. I love telling difficult stories with a healthy dose of humor because I think it’s so much easier to hear. But sometimes I just don’t feel very funny and I need that to be OK.

I need witnesses to the difficult times. I know not all of you are able to do that, and that’s OK. Perhaps I’ll code my posts with happy or sad masks so you’ll know whether or not to venture forth.

Maiden Voyage

This morning I hummed Pomp and Circumstance for my final unassisted ascent of the stairs. This afternoon it was Stairway to Heaven.

Ms. P joined me for the inaugural ride this afternoon:

And back up: 

And Laurie had to test it out: 

It was a full day today. The installers arrived around 10:30 and were done by 1pm. The toddlers were intrigued by the installation, and Moshe, the aspiring engineer, remembered all the instructions. The best part for them though? Boxes and bubble wrap.

The lift has dramatically changed the appearance of the stairs, of course, but also the sunroom at the top and bedroom at the bottom. It's not aesthetically pleasing.  I miss our lovely breadloaf handrail.What I won't miss is hauling myself up the stairs and feeling like I'm going to topple over at any moment on the descent. Life is a bunch of trade offs. 

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Up the Down Staircase

And now for the next phase in the continuing saga of getting from Point A to Point B. About a year ago I put the fear of Goddess into Laurie when I mentioned that I didn’t think I’d be able to continue using the stairs in our home for another 12 years (when she’s due to retire). I thought another 12 months would be stretching it. It’s a full stairway, 13 steps, with landing, from the main floor of the house down to our bedroom and (fully accessible) bathroom.

As Laurie does when there are obstacles to overcome, she obsessively thoroughly explored our options:

1. Since she needs to stay in this house to continue doing her work, moving to an accessible home would be next to impossible for 12 more years.
2. We could rent an apartment for me where she’d come and stay on weekends (didn't we already do that? Before we lived together?)
3. We could rearrange the house so that our bedroom is on the main floor – which completely defeats the purpose of the major remodel we did six years ago, creating new living space for us separate from the rest of the house.
4. We could spend a lot of money and get a stair lift installed.

It seemed as though #4 was the only viable option.

Of course, I can’t think of a stair lift without envisioning that scene from Gremlins:



Barring any naughty gremlins sneaking in to adjust the lift, this should solve the stair problem and make it possible for us to stay here until we’re ready for that retirement condo.

Tomorrow morning the lift will be installed. You can count on thorough documentation, with photos and maybe a video or two.

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My Big Fat Tool Kit

It started with falling. A lot. Falling down the back porch stairs. In grocery stores, coffee shops. One bad fall just before a concert in which I had a solo. Usually I'd land on my knees (which contributed to a very painful torn meniscus and surgery to repair it last summer) and occasionally on my bum (which once contributed to a very colorful hip and cheek - no photo included here). The falls were due to a combination of loss of balance from peripheral neuropathy and from foot drop. My toes would catch on the slightest bump and over I'd go, with no good recovery mechanism because of the balance issue.

I'm using the past tense here, not because the problems have gone away, but because I have some tools at my disposal and because I've become so mindful of my movements and out of necessity, walk very slowly (which usually isn't a bad thing at all). It’s been more than a year since I’ve fallen. I've had some close calls, but with physical supports and mindfulness, I’ve managed to avoid that most unpleasant feeling of taking a tumble without a net.

I started with a cane. Looking back, that was probably the most difficult decision to make, as it signified the first real acknowledgement of disability. At first I used it only when I was out and about. It offers me stability and, as a wise person pointed out to me, it’s a signal to others that I have a physical challenge that isn’t immediately obvious. It was becoming difficult to be in crowds – I get panicky when I feel trapped or when I’m being jostled and the risk of falling greatly increases. Soon I was using the cane most of the time, even in the house.

Two years ago I was in the hospital for a surgery (which I may or may not discuss later). Apparently it became obvious to at least one nurse and by extension, my doctor, that a walker would be a good choice for me. A couple weeks later, the home health van pulled up and delivered one to me, which I was completely unaware of and unprepared for, emotionally. The walker sat for a week or two, me staring at it, feeling resentful and unwilling to take that step (so to speak). But when Laurie and I went for a walk and I was able to go farther than I had for months – maybe even years – I had a change of heart. I embraced it, decorated it (sock monkeys rule!) and began to have fun with it. What I love about these walkers is the built in seat – if I get fatigued or sore, I can turn around and voila! A chair! Waiting in line at the post office? No problem. At a party with limited seating? Thanks, I brought my own.

Ms. P and I "stroll" around the block

But the thing about a walker is, well, you still have to walk. And that’s become increasingly difficult and painful for me. I was having to drive everywhere, even just a few blocks to the grocery store or the library. So when Laurie’s brother and sister-in-law told us their friend was selling an electric scooter for a very good price, I decided to give it a whirl. Wow. Talk about getting my life back! Now I can zip all around the neighborhood, take Liza for long walks at her pace, go to the grocery store, the bank, the library and just MEANDER! I haven’t meandered for years! I feel like I’ve reclaimed my neighborhood. I’m taking photos again (my photo blog), now from the seat of the scooter – I call it “scootography.”

The point I'm trying to make in this long winded post is how difficult it is to accept disability - and nothing screams disability like canes, walkers and scooters - but once the hurdle is cleared, the tools available to us can improve the quality of life enormously. I could easily become a shut-in. But there's a lot of living to do out there in the world, and I'm so grateful for the tools available to help me do that. And to the people who've encouraged me to take advantage of them and who help make that happen.

Next up:  the biggest, fattest tool of all. We get a stair lift installed tomorrow!

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The Backstory

I know some  people are curious about why I have so much difficulty walking and standing but are too polite or nervous to ask. The assumption is usually MS, since that's what my walking resembles. I wish I had a definitive answer - what I have is a 95% sure guess by my neurologist: radiation-induced lumbosacral plexopathy. Here's the story:

In 2001 I was diagnosed with colo-rectal cancer. (More detail about that surreal time in another post.) I went through the standard western medicine protocol - radiation, chemo, surgery, more chemo, more surgery - plus some alternatives and not a little woo-woo. And I'm here to tell you that it all worked! In September it will be ten years (I don't know why they mark survival rate from the day of diagnosis, but there it is). I think we should have a party!

Mostly, things went well for the first five years - after all the treatments and surgeries were over, I was left with a body that worked pretty much like it did pre-cancer, with the exception of my guts, which required far more time and attention than I wanted to pay to them - the message being something about dealing with my shit. Then right at the five-year mark, I started experiencing severe tingling and numbness in my feet. My primary care doc tested my Vitamin B12 level which, as it turned out, was extremely low.

Warning! If you have abdominal surgery, INSIST that your doctor do routine checks of your B12 level for several years. According to Northwestern Hospital, Chicago: "For vitamin B12 to be sufficiently absorbed by the body, it must bind to intrinsic factor, a protein released by cells in the stomach. The combination of vitamin B12 bound to intrinsic factor is absorbed in the final part of the small intestine.Causes of vitamin B12 deficiency include: Abdominal or intestinal surgery that affects intrinsic factor production or absorption." And - it can take years for the deficiency to start showing up since your body stores B12 for a long time.

So. I started B12 injections and gradually the numbers rose into the normal range. But my symptoms were getting progressively worse. Then came the visits to the neurologist. More than any other physician,  neurologists love to do tests. I had every kind of blood test imaginable, body scans, electrical conduction tests, imaging -- and most everything came back normal, except the nerve conduction tests, which showed sensory and motor nerve damage.

I started experiencing balance problems, foot drop, an awkward gait and fatigue. I was also dealing with more gut and bladder issues - which led a few doctors to the conclusion that a bundle of nerves in my pelvis was in the line of (friendly) fire during the radiation treatments. My colorectal surgeon flippantly remarked that radiation was "the gift that keeps on giving," but then didn't offer much of an explanation or encouragement. My neurologist gave it a fancy title: radiation plexopathy. It's another condition that can take years to start presenting problems.

It's a pretty rare condition, from what I've been able to determine. I have no idea what to expect in the future in terms of my ability to walk. So, guess what - I get to take it one day at a time!  We are starting to see more and more long term effects of cancer treatments as people are outliving the disease for longer periods of time - or are there just more people diagnosed with cancer?

I decided to start this blog to journal about some of my experiences, to share resources and ideas, jokes and successes, to ask and answer questions and to celebrate the life I'm so blessed to have. I'm happy you're on this journey with me.

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