Happy New Year - 2020

It’s time for an update! It doesn’t feel like much has changed since I last wrote, but there have been a few significant revisions in body and home. 

First, the fun stuff.

It’s been two years since we got our wonderful wheelchair van - it has made travel so much easier and safer and better for us. It’s a 2014 Toyota Sienna with a ramp that deploys, and it even kneels like a bus when I’m on a flat surface, so the ramp isn’t at such a sharp angle. It was a steep learning curve - so many whistles and bells on these new vehicles! There are still a lot of things it will do that I haven’t learned yet, but I have the basics down. The reality is, I don’t drive a lot; my scooter gets me around to most places I need to go (grateful for small carbon footprint), but when I need it, it feels like such a blessing. 

Another wonderful change is my remodeled accessible kitchen in the cottage. It makes cooking so much easier and fun, with lowered counter, roll-in niches, and pull-out shelves. It has created a ton more space in the cottage, so moving around isn’t so challenging. Sometimes I just wheel round and round because I can!!  

I was also gifted with a much smaller wheelchair for use indoors - so much easier to maneuver than the big red beast! Laurie chose yellow for this one and calls it Bumblebee. I don’t run into door frames and cupboards or unintentionally tow things behind me nearly as much now. Again, much gratitude for our friends who are so so generous. 

We had a rubberized surface put down on the pathway between the front porch ramp and the cottage gate. It’s been wonderful for the rainy season - I’m not tracking in 20 pounds of mud and gravel when I come in the house. It's not the most glamorous aesthetically, but we chose function over form for this one. 

Health news

I’ve now heard several doctors refer to radiation as “the gift that keeps on giving,” and not in a good way. My mobility continues to deteriorate; I’m not able to take more than a step or two without assistance. I can still stand but have to hold on to something (hence lots of grab bars in the house), and the pain continues. Someone asked me the other day what my feet feel like when I stand. “Like boat anchors,” I said. They feel heavy and almost unmovable and pretty much useless. There are other things in the nether regions that are affected more and more as well - my bladder for one. Just yesterday my urologist attached a mesh sling to my bladder to - hopefully - keep the urine from sneaking out before I’m ready for it. Fingers crossed this will work because I’m really sick of the whole business.

I’m so curious about the radiation question, as it took my neurologist a long time to come up with a diagnosis after a lengthy process of elimination. Now it seems that doctors are more aware of it, so it must be more common. The length of time between radiation and symptoms is long (5-10 years!), so diagnosis is tricky. My guess is that the percentage of long-term survivors has increased in the last decade or so; therefore, more later term effects of treatments are showing up.

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I've had a lot of fun drawing this year.

In September I had a nasty bout of cellulitis (infection under the skin) in one of my legs. With an excruciating headache, I was concerned about a blood clot, but I was probably on the verge of a systemic sepsis, so a midnight ambulance run was the excitement du jour. I was in the hospital for three days with IV antibiotics and some really awesome nursing care. It was a wake-up call for me to do better self-care - diet, movement, attention to wounds - and I’ve made some progress along those lines. I’m determined to continue on the path to self-care. Stay tuned!

Is it accessible?

[Caveat 1: I know there are other disabilities people struggle with that need to be addressed, but this is the one I know, so this is what you get!] 

[Caveat 2: I realize I've written about this before, but it's an ongoing issue and I still need to kvetch about it and remind people about it. Plus, here are some solutions!]

I sound like a broken record: "Is the venue accessible?" I ask every time I plan to attend a concert, workshop, meeting, party. Some people have gotten that question from me multiple times; now I just say, "You know what I'm going to ask." I admit to occasionally asking even knowing I probably wouldn't attend; it's my self-imposed mission to remind people that it's important to consider their venue choices in terms of access. I know it's not always easy to find a place that everyone can access; and I know that people often try and don't always succeed.


But I will tell you this: it feels rotten to be excluded from an event that I want to attend. 

I don't expect access to be the first consideration when people are planning events, but I do hope it occurs to them at some point, and even that it's fairly high on the priority list. 

Things have come such a long way from pre-ADA days. I can't imagine what it was like for people in wheelchairs before curb cuts and mandated accessible bathrooms and entrances to public buildings. But we still need to do better.

One of the reasons I'm not singing with my choir now (Aurora Chorus) is because of access. The rehearsal room is manageable, but certainly not ideal (and this is a State university building!). The room entrance is at the top tier of the choir risers/steps, and so I'd be stuck there, unable to get to a lower level to see and hear better and participate fully. It worked, sort of, when I was using a walker, though I'm amazed I didn't fall, hauling and bumping the walker up and down the steps. The concert venue they have used for the past six years or so - a church - is abysmal for people with disabilities, both for audience members and for performers. The stage is difficult at best and impossible at worst to access with a wheelchair. But thanks to the persistent efforts of the board and concert committee, the choir is changing venues, and they tell me that this one is accessible, so I may be returning in the fall. 

Something that will make that possibility even more doable is the wonderful wheelchair van we now have! I no longer have to wrestle with getting the scooter on and off the power lift, and I can now take the wheelchair out and about, not just the scooter. (More on this in the next post, coming soon.)

Having an event? Check it out!

Below is a checklist I devised of some things to consider when planning an event. Some of these will be N/A if your event is in a private home (but if there are too many N/As, consider changing venues!). These apply to wheelchair users but are also appropriate considerations for people using walkers or canes.

• Assistant: Is there someone - not the host - who can be a point person? Someone to connect with the wheelchair user to show them best access and check with them through the event? I have appreciated this so much when it happens; for example, Artichoke Music does it right! I felt downright pampered there when I attended a concert. 
• Location: Is the venue easy to get to by car or mass transit? How's the parking for a van with a ramp? Is it possible to save a parking spot or spots for wheelchair users or people who can't walk far? 
• Entrance: Are there steps? Even one step can make entrance impossible. If so, is there an alternate entrance? Make sure it's clearly marked and easy to get to. Another option: some mobility stores have ramps to rent.
• Seating: Will there be designated wheelchair seating? Some users are fine sitting in their chairs, others prefer to transfer to a "real" chair. Paths to seating need to be kept clear - free of equipment, cables, chairs, etc. 
• Bathroom/s: Are they accessible? This can mean a lot of things: doors need to be wide enough for a wheelchair; grab bars are mandatory in places that claim to be ADA compliant. If this is a private home, do the best you can to make it accessible. I can walk a short distance if I have sturdy things to hold on to, but not every wheelchair user can. If your bathroom isn't fully accessible, be sure to make that known.
• General flow: Is the event on more than one level? If so, is there an elevator? Are aisles and access routes clear and wide enough for a wheelchair or walker? If there are food tables and products for sale keep access open for wheelchairs and keep the table height low enough for a wheelchair user to see and reach the items - especially the chocolate! For a banquet-type setup with multiple tables, often the tables and chairs are too close together to allow a walker or wheelchair through. Do the best you can to create pathways so the user isn't confined to the perimeter. You may have to remind other participants to keep pathways clear.
• Signage: Have some good, legible signs to indicate where bathrooms, alternate entrances/exits, food and drink are. Make sure they're posted at a level that someone in a wheelchair can see easily.
• Emergency exit: It's not a bad idea to have a plan if it's necessary to evacuate someone who can't walk, especially if the event is on an upper level and the elevator isn't usable. Designate a few strong people who could potentially help someone down the stairs if necessary.

If you are the wheelchair user, it's always a good idea to call ahead of time to find out the particulars and to give the event host a heads-up to expect you and your chair. If they need to make any changes, they will appreciate having advance notice.

Well, that's one way to see the stage!

Big thanks to those of you who are already aware and doing much of this. Do you have ideas to add to this checklist? Please leave me a comment below or email me at ladyluck AT teleport DOT com. This is a team effort! Thanks!

Revenge of the Mobility Machines

I have been wrangling an electric scooter for some years now. It isn’t difficult, and it has allowed me to greatly expand my world from four walls to my neighborhood … and beyond.

Last year it became evident that I needed indoor mobility assistance as well. I jumped through all the necessary hoops and I untangled red tape with Medicare, and they sprang for one. They didn’t give me a choice or let me try out any of the buggies, nor did they give me much in the way of driving lessons when it was delivered. They just said, “Here’s your chair,” and left me to figure it out.

I have wrestled with this chair for a year and a half. The nice thing about the scooter is it has a short wheelbase and I usually have plenty of space to maneuver it. The Chair has a very long wheelbase (three sets of wheels!) and, though it turns on a dime, it takes a damn big dime to turn on. And it seems like anything that is within 50 feet of it will get caught under one of the wheels and dragged across the room until I notice that I’m trailing a grocery bag or a dog toy or a throw rug. Or that I've knocked something off of a table.

One of the hardest lessons to learn with the Chair has been to remember to turn it off, or at least put it in neutral when I’m doing something that requires bending over the front of the chair. If it’s on and I lean on the joystick, The Chair will go places I do not want it to go. Often I’m close to a cupboard or piece of furniture and the forward motion will bang me into it. Fortunately, so far, it hasn’t involved running over children or pets or flying off of a porch.

The other day I was attempting to do a juggling act with both mobility devices. I had taken Liza for her scoot and needed to exchange the scooter for The Chair to go back in the house. Because the cottage remodel has begun, there is construction material in the courtyard. And we just had a million inches of rain, so there was a great deal of mud in the area.

I moved The Chair to get my scooter into its parking spot. I tossed the rain cover onto The Chair and it landed on the joystick – off goes The Chair, all on its own, headed for the mud and the visqueen and the new construction. Luckily, it got stuck on a metal border and sat there spinning all six of its wheels.

In the meantime, I had been moving the scooter by holding the accelerator and handlebars and walking beside it. I must have startled when The Chair took off; I didn’t let go of the scooter (which would have stopped it) and it flung me into the mud and onto a pile of wooden stakes (pointy side down, whew!). I sat there for a minute, checking my extremities and hips, then started yelling for Laurie to “Help!”  (No, don’t say it!)  “Laurie, I’ve fallen….  (No!) … and I can’t (No! No! No!) get up!” (Aaaaarrrrgghh!) The truth is, I hadn’t tried, but I was in such a state I convinced myself that I couldn’t.

After a couple of minutes, I heard a man’s voice: “I’m coming!” Our neighbor Chris is a pretty amazing guy, always willing and able to help. He came over and lifted me up (not an easy task!), checked for injuries (he’s also a nurse), and then rescued The Chair that was still on the loose (but still stuck on the border). After he was sure I was basically OK, he finished the wrangling of the machines, and I was merrily on my way. 

Laurie (who hadn’t heard my pleas for help) asked me, after she made sure I was OK, “Where was your phone?”  “In my pocket.” It hadn’t occurred to me to call her, not that she could have dropped three babies to come to my rescue. But she could have shouted words of encouragement!

I was not seriously injured, but have some lovely bruises and not so lovely sore muscles. 

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Well, here’s some really good news!  We are the recipients of a very generous gift from some dear friends – money for a van that will be equipped with a ramp so I can wheel right into it. This will make areas of our lives so much less complicated. I’m chuffed! And extremely grateful to amazing friends!

Not this one ... but I like the color!

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.