Next steps (warning: puns ahead)

I decided to resurrect this blog since some new challenges have come up in the last six months or so, and I feel drawn to again share what’s going on in my little corner of the world. I knew it had been a while since I posted here, but didn’t realize that 3 ½ years had passed! Time flies.

I’ve learned a lot in the last few years about disability, access, acceptance, letting go, grief, love… some are lessons I’d rather not have to learn, but some are deep blessings and lessons in grace.

Berkeley Breathed

The most prominent pending change these days is my need for a power wheelchair in the very near future. Like most next steps for me, I’ve been dragging my feet (oh, so many pun opportunities!). I started talking about this over a year ago; then more serious talk, leading to a home evaluation by a PT and a vendor to learn the process for Medicare coverage (power chairs do not come cheap!) The ball was in my court, and I let it lie there for a while – I kept imagining what it would be like to wheel around the house. It felt so irrevocable, like the last nail in the coffin, the final act of giving in to the damn disability.

But walking, even with the walker, has become increasingly difficult and painful. I’ve had a few falls, and the thought of breaking a bone – or even spraining an ankle - is distressing. So I have an appointment with a PT next month who will evaluate the necessity for a chair, and then we can get the ball rolling. There are a series of hoops to jump through to satisfy Medicare that it’s a necessity. I’ve been told that because I am partially ambulatory, it might be difficult to convince them (so I have to wait until I’m flat on my back to qualify??) – but I’ve had such good experiences with the previous hoops I’ve jumped through, I have confidence it will be a slam dunk. (Have you noticed how athletic the words are for action plans??)

Meantime, we are examining the changes we might need to make in the house to accommodate a chair (we already had a ramp built last spring). I’ve been using my scooter more and more and have a better sense of how my days will roll with a chair. I’m starting to look forward to it now, because it’s so damned exhausting to walk from point A to point B and I’d rather spend my energy doing something more fun and productive. 

I have quite a few ideas for more blog posts, so stay tuned! 

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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