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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