Thursday, September 5, 2019

My Walker is an Open Invitation to Interrupt Me


When I was in grade school, there was a popular prank that involved putting a “Kick me” sign on someone’s back. You would cheerfully greet the person with a pat on the back, and surreptitiously stick on a piece of paper with the handwritten words and hope it would stay on for hours.

Hilarity would ensue.

These days, I feel like my walker serves as my personal “Kick me” sign, an invitation that says: 

“Hey, why don’t you stop this disabled stranger (or get in her way) and ask her questions, quiz her about her walker, tell her about your mother, grandfather, aunt, uncle, etc. who has a walker/cane/wheelchair, ask what is wrong with her, tell her all your health problems or those of your mother, grandfather, aunt, uncle, etc?”

That has to be the reason why complete strangers, when they see me using my walker, feel compelled to approach me. And comment. Or holler.

And in one case, almost knock me over.

I didn’t experience any of this when I used a wheelchair, but I’ve been using a walker for more than 10 years now and it’s been an endless stream of uninvited interactions. Because I have limited mobility, I can’t just walk away quickly or pretend like I didn’t hear them. So I am drawn into many conversations.

And because I am very, very nice, I will patiently answer their questions or listen to their stories, even when I just want to go from point A to point B and not necessarily have a long chat.

I have used a walker for about 14 years, ever since cancer ravaged my brain and abilities. My rare type of non-Hodgkins lymphoma is gone. (Woo hoo!) But the disability remains.

And I have a fleet of walkers  of various types to help me walk. Each has its own function. There’s one I use indoors at home, another outdoors at home and still another awaits me when I go upstairs. There’s one I use in my exercise class and a lightweight one that folds up and is easy to put in my shopping cart. There’s a different lightweight one that I use when walking longer stretches and there’s the tri-wheeled one I used for long distances or uneven terrain. There is another one which incorporates a seat but it is too bulky to take in the car and doesn't really work for someone like me who cannot balance by myself. 

I am always in search of the perfect walker. I’ve even advised two different college students who wanted to design one as part of their studies. But alas, I haven’t yet heard of The Perfect One. (Some of my criteria: lightweight but sturdy, foldable and portable, wheels that swivel, brakes that work, a fashionable look and affordable.)

Others are apparently on the hunt as well.

“Well, look at that!” they will say. “That’s different. I’ve never seen one of those! Maybe mom (etc. etc.) would like one of those. Let me have a look at it.” 

These comments are usually when I am either using one of my lightweight walkers or my tri-wheeled one. They fold up narrow while I am walking, which comes in handy when squeezing between tables in restaurants or aisles in stores. I am happy to share information about the type of walkers they are. But often my patience is tested. 

I was using one of my lightweight walkers one day as I passed by a woman waiting in the courtesy area at the drug store pharmacy, behind the line so you don’t overhear the other customer’s business. I was just passing by, not in line for the pharmacist, when the lady exclaimed over my walker, came over and tried to yank it from me.

“Well that’s a nice one!” she said, and with both hands grabbed the handles of my walker, trying to take it for an immediate test drive.

I held on for dear life, saying, “I need this to walk! You can’t just take my walker away!”

Another time, I was in a nail salon waiting area and another lady — intrigued by my walker — told me about her mother who uses a mobility aid. She asked if she could take it for a test walk.

Yes, I said, because I was sitting down and didn’t need it. She wandered around the salon for a bit and returned it.

I have answered questions about the brand, where I got it, how much it cost, and my illness. I don’t mind as long as you are polite about it and the question doesn’t stretch into a long conversation.  I was on a sidewalk in Palm Desert on a mini-vacation when a woman walked up to me and loudly said: “Hip or knee?” 

“Pardon me?” I said. 

She repeated “Hip or knee? Which operation did you have?”

“Neither,” I said. “Brain cancer.” 

(And top of the morning to you, too, I wanted to say.)

Then, she stopped and told me her hip or knee and walker story and I told her a brief version of mine.

I’ve experienced some commenters who are brief and to the point, and some who are a bit rude like she was. No time for chit chat, they just want me to answer the questions of where I got my walker and what is wrong with me.

I was just sitting down in a darkened movie theater recently when a voice barked “Temporary?” My husband looked around to see a woman sitting alone in an aisle behind us. “Are you talking to us?”

“Yes, is that walker temporary or permanent?” 

“Permanent,” my husband and I both answered.

“Well, have you seen the walkers that are upright with the high handles. My sister uses one of those and she really likes it……yada yada yada………”

I told her I had checked those out and they were too heavy for me to use in my car and too expensive. And, I wanted to say, can I just get ready to watch the movie?

Then there are folks who see me and tell longer stories. One time I was at car wash, sitting on the bench waiting for the signal my vehicle was ready. A guy next to me struck up a conversation about disabilities in general… and how he is a minister of some sort and they have a lot of disabled people come to the services…..yada yada yada. And on and on. 

Another time I was at a concert and was heading to the restroom during a break and a man came up to me and said his wife used a walker, too, after surgery and she’s sitting over there….yada yada yada…Did I mention I was on my way to the restroom? And didn’t have extra time to chat? 

After show, he met up with me again in the line to buy merchandise from the band. And his wife was there so I got to meet her and hear about her prior surgeries and another upcoming one and…yada yada yada… until somebody protested that we were holding up the line. 

Some days, I just want to make a clean getaway. On a hot day a few weeks ago, I had left my local Walgreen’s and was in the driver’s seat of my car folding up my walker to put it inside when I heard a loud voice. “I’ve been there!” A woman was heading my way, came over to the driver's side, said she used a walker for a while when she had some sort of operation or injury. And she proceeded to fire questions at me:

"Why do you use the walker?"

Cancer.

"What kind of cancer?"

Non-hodgkin's lymphoma. Mostly in my brain.

"Where do you live?"

Here in Castaic.

"Where in Castaic?"

Thinking does she want my address?, I gave her the general neighborhood where I live.

"I’m pretty sure it’s the water. Everything here has been poisoned from munitions plants."

Well, I got sick right after I moved here, so don’t think it’s from that.

"You should check it out. The water tables have been poisoned.

Who is your doctor?"

He’s from UCLA.

"Hmmm."

Ok, I kinda gotta go.

"Have you heard of_____?"

No.

"Well, it’s when you walk in nature and commune with the earth and the spirits. I live in (a mountainous area about 20 miles away) and go on them all the time and I will pray for you next time I’m on one."

OK. Thank you… I kinda gotta go.


All of these people are well-meaning. But imagine if you were interrupted all the time when you are just trying to get around and do your shopping, get your nails done, get in your car or watch a movie. These meddlers are lucky I’m so nice.

Wednesday, August 1, 2018

Saying Goodbye to My Hospital Bed Feels Good


I feel like a little kid graduating from a crib to a big girl bed.

After 12-and-a-half years of sleeping in a hospital bed in our family room, I have moved on. To a regular bed in an actual bedroom.

I am elated and proud. And a tiny bit wary.

The hospital bed has been disassembled and soon will be picked up by trash collectors. Taking its place are a couple of new couches -- replacing the sectional we owned for nearly 30 years.

It’s a big win for the world of home decorating and for me. I’ve been sleeping in the out-in-the-open bed for a long, long time.

When I first got sick in 2005, doctors were unable to diagnose me for months. They suspected I had cancer, but they couldn’t find the specific cells (after numerous scans and blood tests, a splenectomy, grueling bone marrow biopsies and spinal taps). Meanwhile, I got sicker and sicker, lost more and more neurological function. I lost my speech, the sight in one eye and the use of one, then the other leg.

So I was in my home hospital bed months before I was hospitalized. I was too weak to climb the stairs to my bedroom.

The bed has been my home for more than sleeping for years. I am cancer-free (YAY!), but the non-Hodgkins lymphoma (eventually located after a brain biopsy) has left me disabled and weak and in nearly constant pain. Multiple compression fractures in my back make it impossible for me to sit up, walk or stand for long periods of time.

The only thing that makes the pain go away is to lie down flat. I would use my hospital bed many, many times a day for this. And for the occasional nap.

 A few years ago, a friend took a fall and broke her ankle. While recovering, she could not go back to her condominium because it required going up stairs. She was looking for a place to stay after spending time in a convalescent facility, but she hesitated about asking friends to use their home. “It’s not like they can put a hospital bed in their living room.”

Yes, I told her. They can.
Well-worn Bunny on my in-home hospital bed

On one hand, it was embarrassing to have a hospital bed in our family room. Other times, it was a godsend. I learned to get over the embarrassment, as I had to do to with other aspects of my sickness. 
When I first got out of the hospital after spending 4-and-half-months in institutions’ hospital beds, it was wonderful to have one at home. My own sheets, my own TV, a button to raise the head or foot of the bed, railings to prevent me from falling out and to help me sit up.

In those early months, my home nurse and my family caregivers used it as leverage to lift me into a wheelchair or a commode, and as a place to bathe and feed me. My physical therapist used it as a beginning site for my exercises, slowly getting my muscles to work again.

It was my anchor for celebrations. My husband, so happy I was home after many months away, threw a neighborhood party for me in June 2006. I was thin, weak, barely hungry and horizontal for most of the evening, but I loved seeing so many people. I was ecstatic I was home. 

On my 50th birthday that same year, dear friends and family came to help celebrate my milestone. I managed to open presents, cut the cake (and eat it, too) while in bed.

At smaller get-togethers over the years, I would try to sit up and be sociable, but would have to lie flat after awhile, so I wouldn’t be in pain. As I gradually gained strength, the home nurse and physical therapist quit visiting. More than a year of intense chemotherapy, involving a week in the hospital and three at home, made me appreciate the ease of sleeping and recovering in the bed. Then, when the cancer returned and I underwent a bone marrow transplant, the bed helped as I again slowly regained my strength.

Later, the bed proved invaluable for my two separate carpal tunnel surgeries and months of recovery when I couldn’t use my hand to grip my walker. The button to raise myself up helped lift me to use my walker with a special elbow-steering attachment. 

But there were downsides to sleeping in an open room all the time. Every time someone came to the lower level of our home late at night or early in the morning, I was awakened.

And the two cats we had over the years considered me part of the furniture. Day or night first Allie (RIP) and then Albert would jump onto the covers, snuggle up at or on my  feet, or sit on my chest and breathe in my face or give me a quick couple of licks to make sure I was awake.

When my bed’s motor finally gave out a few months ago, it was stuck in the nearly-flat position.  This was a great angle for my back, but bad for getting up or seeing the TV, particularly with Albert on my chest. Medical equipment companies said they would not repair it but would replace it. At a cost of about $2,000 with insurance, I declined. (When the bed was first sent it to me, it was on a rental basis. After a year or so, it was declared ours. We never paid a cent for it, because our medical bills routinely exceeded the maximum insurance limits.)

We instead decided to buy a sofa set that was easier to get in and out of than our previous one. And I could use a relocated lower bed in the adjoining room to sleep. (I couldn’t get in the previous one due to its height -- and the fact that steroids use during my sickness left me with osteoporosis and 2-and-a-half inches shorter.)
New furniture!

Bunny -- my cancer buddy who was a fixture on the hospital bed -- found a new home in the regular bed in the bedroom. 

This new arrangement is working out fine. I’m definitely getting more sleep, uninterrupted. I’m adapting with a bit of difficulty to not having the bars on the side -- which I depended on to get up or turn in bed. And I’ve moved my rolling tray table -- which at times was piled high with medications or supplies -- into the downstairs bedroom so the area looks less like a MASH unit. I lie down on the new love seat when I need some flat time or move to the bedroom for long spells of back relief. 

Our family room looks like a family room, for the first time in more than a dozen years. But I’ve learned that a family room isn’t just what’s pictured in furniture ads. It’s the good, bad and the ugly things that happen there. It’s life and how you adapt to it.

Goodbye, hospital bed. I could not have done it without you.



































Sunday, January 7, 2018

California Cracks Down on Disabled Parking Cheaters (Finally!)



California laws changed the first of the year to make it more difficult to obtain and renew disabled parking placards.

Hallelujah.

I wish I could jump for joy. But I can’t because I’m disabled. And I don’t have the time to even try. I’m too busy looking for a handicapped parking space while sneering at able-bodied folks using the spots.

Often they are just shoppers or restaurant patrons, but these dastardly motorists include Uber drivers, construction workers, delivery people and armored truck drivers (all of whom have blocked some of the handicapped spots where I have tried to park).


Since cancer left me disabled nearly 13 years ago, I’ve been growling at cheaters and ranting about them in my blog and social media. I’ve appealed directly to my local law enforcement officers, praised the occasional sting operation and investigated ways to report the crimes (There's nothing really effective. Parking Mobility has hopeful merits but it's not for me, when I'm driving alone.)

And now, on the heels of a scathing state audit that showed California’s administration of the disabled plates and placard system embarrassingly sloppy, the state implemented a law January 1 that begins to address the problem.

I think the law should have been harsher (given the magnitude of disabled parking fraud), but it’s a start.

Consider some horrifying statistics from the audit:

— As of June 30, 2016, DMV records showed there were 26,000 drivers aged 100 and above with active placards or plates. That same year, there were 8,000 centenarians in the state. 

— Additionally, some 35,000 dead people still had active placards/plates. 

— Of 2.9 million placard/plate owners in the state (about one in 10 drivers), auditors estimate that in a three -year-period, 1.1 million placards/plates were issued without proper medical documentation (required to obtain a card).

— During that same time, 260,000 applications were approved with questionable medical signatures.

The problem, the audit concluded, was multifold, but boiled down  to improper tracking and enforcement and lax rules that let cheaters get away with using placards they shouldn’t have.

The new law will put some tighter rules in place: making changes to the application process to require more detailed verification about what qualifies the person for a placard, a change in the automatic renewal process for permanent placard holders, and a limit on the number of replacement cards a holder can receive.

Previously, if you get the blue permanent placard, it would be good for two years. At the end of that period, a new one just appears in your mailbox, free of charge. As I wrote in a previous blog post, this just invites misuse. 


The new law mandates a renewal process requiring applicants to fill out a notice every six years, beginning with the placards expiring in 2023.

It's a step in the right direction, but not strict (or quick) enough. Why not require an occasional recertification by a doctor?  Some might find that burdensome, but I’m pretty sure disabled people see a medical professional fairly often, so it would be no big deal to get another signature every four or six years.

Another aspect of the new law is a limit on how many replacement placards a person could get. Before, you could get a replacement if yours was lost, stolen or damaged by filling out a form and giving it to the DMV. In nearly 14 years of using disabled placards, I only remember one time when I had to get a replacement (and I am constantly dropping and losing things). But the audit found with no limitations, people abused that option. Big surprise.

Nine people had requested and received 16 or more placards over a three-year-period and two had applied for and received 20 or more.

Now, the new law limits you to four replacement placards in a two-year period, without having to get a medical certification. Again, I don’t think this strict enough, but at least it’s something.

Other audit recommendations the DMV is adopting are improving record-keeping, matching its files with death records, working toward a system where a traffic enforcement officer can check a database of registered placard owners, and scheduling, monitoring and publicizing more stings.

All good ideas. 

And there’s another one that the DMV pledged to implement: a public awareness campaign (similar to the seat belt and texting ones) alerting the public that it’s NOT OK to park in a disabled spot or to use a placard illegally.

Seems like common sense, I know. But unfortunately, there are lots of folks out there who use someone else’s card, use them after their loved ones die, sell them on the internet or visit doctors who promise to sign a disabled plate certification for a fee. And that doesn’t include the flagrant violators who think it’s OK to park in the spots “just for a minute” (like to use an outdoor Redbox movie dispenser or pick up take-out food) or think their work (construction, Uber driving or delivery) trumps the law. 

While the enhanced rules and plans won’t solve all the violations I see on a regular basis, it has to help. With better scrutiny of the application process, an emphasis on improving enforcement and a public awareness campaign, maybe — just maybe — people who regularly break the disabled parking laws will curb their inconsiderate, illegal behavior.

That would be great news to those of us who depend on those spaces. 



















Wednesday, December 28, 2016

These Are a Few of My Favorite Things Because They Make My Disabled Life Easier


‘Tis the season to be thankful.

I’m thankful, as always, for my life, family and friends. But there are lots of other things -- innovations, products and services --  that I am grateful for on a regular basis. Each of these has made my new life (can I call it new if it’s been more than 10 years?) as a disabled person much easier.

1)  Downey Anti-Wrinkle Spray

One of my favorite inventions of recent history, this has been a godsend. I remember using it as far back as 2002, before cancer left me disabled, unable to walk up the stairs of my home or balance well enough to iron something.


I first picked it up as an easy way to spray away the wrinkles in clothes without having to haul out the ironing board and set it up. It was genius: you just spray the clothes, smooth it out a bit, then let it dry. Voila!

When I tucked a bottle in my suitcase for a trip to London, it turned out to be invaluable. Traveling in a group of five women with limited knowledge of hotel room amenities or outlet compatibility, my miracle spray came in super-handy. I left it with a friend who was studying in England. Downey spray hadn’t yet hit the stores there. It took a while for it to be widely available here, but now you can find the product (or an imitator) easily at grocery or drug stores. It even comes in travel sizes. 

After lymphoma left me permanently disabled and requiring a walker, the spray has become a favorite product in my home. I can’t climb the stairs to do laundry or fluff up items in my dryer, but I can easily spray clothing items while they hang on my bathroom towel rack and leave them to de-wrinkle overnight.

2) Dream Dinners 

This company has franchises in 24 states and is a “make-it-yourself” meal mecca. Again, I first discovered Dream Dinners before I got sick. It was an easy, fun way to assemble delicious meals -- with my friend or daughter in tow -- in advance to have several pre-prepared selections to choose from. When I was diagnosed with lymphoma and was essentially unable to help in the cooking at my house, my friends and relatives sent me gift cards to my Dream Dinners. For a small fee, you could order them assembled and then anyone could pick them up, bring them home and follow directions to make an easy, nutritious meal. It was more affordable and healthier than having to rely on fast food. 

More than 11 years after my cancer diagnosis and eight years after my bone marrow transplant, I still am a Dream Dinners loyal customer. If I order regularly, the assembly fee costs nothing and I just pick up many meals for the month directly from the store and put them in my freezer. It still takes some work in the kitchen to cook a meal, but thankfully I can do more of that now. I still avoid the planning, shopping, chopping, and measuring. For someone who can’t stand long or balance well, it’s a lifesaver. 


3) Mimi’s Cafe’s take-out holiday feasts

Once I discovered Mimi’s Cafe’s Thanksgiving dinner, it’s been hard to imagine the annual holiday without it. For (this year) about $90, the Mimi’s to-go meal feeds 8-10, is well-packaged, easy to heat up and delicious. You still need helpers at home to get it to the table.

Here’s the rundown of what’s in the Thanksgiving feast: 1 whole herb butter basted turkey, 2.5 lbs of buttered cornbread stuffing, 2 lbs of candied pecan sweet potatoes, 3 lbs of whipped mashed potatoes, 2.5 lbs of green bean casserole, 12 oz. of apple cranberry orange relish, 32 oz. of turkey gravy, 2 carrot nut loaves and 1 whole brown sugar pumpkin pie. 

The restaurant also offers similar dinners for other holidays.

If you just want an easy-to-make meal with plenty of leftovers, it’s worth checking out. But if -- like me -- you are disabled or not able to operate like you once did in the kitchen, it’s a gift. 

4) Banking on my smartphone

I love being able to deposit checks on my iPhone.


In the olden days, you used to have to bring a check with you to the bank, take it to a teller, fill out a deposit slip and stand there while it was deposited to your account. Sometimes you would have to show ID, if the teller didn’t recognize you. 

Then progress and technology allowed people to deposit checks by using a pneumatic tube at the drive-though window. You could chat with the teller at the window via a microphone. In time, the tubes and employees were replaced by ATMs: both walk-up and drive-through versions.

This is all well and good, but not really ideal for disabled customers like me. It’s a pain to get out of the car and use a walk-up ATM. Making a deposit requires balance to insert the check or cash.  I feel vulnerable, practically advertising while making a monetary transaction that I am not able to walk without assistance. Or run after any robber. 

Even at the drive-though ATMs, I have difficulties. At some terminals, my arm isn’t long enough and I can’t get close enough. The height of the buttons aren’t quite right. I have to open my door, put one leg out (if it will fit between my car and the curb) and turn and really stretch to insert my card, plug in my numbers, deposit checks and/or retrieve cash and get the receipt. Then I strain to free my leg, place it back in the car, put on my seat-belt, etc.  This is all time-consuming, which folks in cars behind me do not appreciate. (Yeah, that’s me also holding up the line at drive-through car washes, postal mailboxes and pharmacies, drop-off library book containers and ticket-issuing parking garages.) 

Once I got my smartphone and downloaded my bank’s app, my banking life became easier. Following step-by-step instructions even I can understand, I can deposit a check without leaving my house. I can also transfer money and pay bills. I still have concerns about getting cash out of an ATM (someone could grab my money and sprint away in a flash), but thankfully there’s an alternative to that. 


5) The cash-back feature when using a debit card at the grocery store

Woo hoo.














Tuesday, September 27, 2016

Five Ways to Handle a Cancer Diagnosis

Here are a few things you can do to help navigate a devastating diagnosis:

Don't get mired in "Why me?"

It's OK to be angry and feel sorry for yourself. For a while. But focusing on the "Why me?" question will drive you crazy and get you stuck in misery. There is no good answer to this. So don't blame God or yourself. I even suggested this to a friend diagnosed with lung cancer. She was a lifelong smoker who felt completely responsible for her disease. But lots of heavy smokers never get lung cancer and other folks who have never smoked get it. It doesn't make sense and it isn't fair. While you are dealing with a life-changing event, it isn't worth the energy to ask why.


Say yes to help.

People don't know what to do when they hear about your diagnosis. But let them do something. You or someone close to you can help guide them. When I was at my lowest I really didn't want to chat with everyone I knew. But I loved getting cards and offers of help. I learned to be specific: when a friend offered to do my family's laundry, I told her we were OK with the laundry but what we could really use were meals. And I asked her to spread the word.

Say yes to emotional help, too.

One of my hospital roommates with a similar diagnosis as mine (non-Hodgkins lymphoma) was exceedingly depressed. Married with teenage children, she was angry and hopeless. But she declined when nurses or doctors suggested she see a therapist or try an antidepressant. I  told her to accept their offers. It might help and it certainly can't hurt, I told her. I, too, have a husband and children. I cried in the hospital every day, but not all the time. I would weep through grueling physical therapy sessions.  But I was open to any kind of suggestion to alleviate my emotional pain.  I said yes to antidepressants, counselors, any volunteer who would hold my hand and a visit from any denomination of clergy. They all helped me get through my darkest times.

Don't be a defeatist.

Your life is not over, it's just different. It really annoys me when people will bring up their illness or age to qualify whether they will be alive at any day in the future. An older relative was hesitant to commit to a wedding a year away. I, on the other hand, said I would definitely be there (and I was). Another friend who is a cancer survivor routinely qualifies her plans with "I don't know what my future holds." News flash: Nobody does.

Focus on the good things day to day.

When I was released to my home after spending nearly five months in a hospital bed, I remember being moved to tears at the colors and beauty around me. The decor of my house, the backyard flowers, the chirping of birds: All were extra sweet to me. I still try to pay closer attention to such things as I experience them. We spend so much time griping. Really take the time to recognize the happy moments. Comment on them out loud so others can join in your reverie.





Wednesday, May 4, 2016

On the Road: Misadventures in Disability


Around my hometown, I prefer to frequent handicapped-friendly establishments. Sure, they are all supposed to be ADA compliant, but some just don’t make sense or are extremely difficult to navigate. I know where it’s a pain to get a parking spot and where it’s tough to maneuver through the aisles or tables.

I’d rather go to a store or restaurant where I know it will be easy to get parking, where I can guide my walker easily while inside and where the bathrooms are accessible and easy to navigate.

But it’s a whole different story when I hit the road. 



Some recent trips to Phoenix, where I spent 20 years as an able-bodied resident, showed I am throwing caution to the wind when entering unfamiliar territory.

A few months ago, we went to Phoenix to attend a reunion of newspaper people I used to work with. It was at a Mexican cantina near the university in Tempe. I had been there before when I lived in Arizona, before cancer (lymphoma) left me disabled. I was looking forward to a festive get-together with former colleagues.

My heart dropped when the hostess pointed to a private room UPSTAIRS. I looked at several steep stairs -- the equivalent of climbing a mountain for me. Was there an elevator? we asked. No.

I almost cried. Almost. After driving nearly seven hours across the desert to see some people I hadn’t seen in decades, I didn’t want to greet them with puffy, red eyes. 

Was there an alternate route with a ramp? we asked.  No. Was there an easier way? Yes, I would have to go through one of the dining areas, squeeze through the kitchen and up the alternate entrance with only three steeper steps and no hand rails.  

Super.



I had to interrupt the kitchen staff and then find two people to help me up the stairs. (Fortunately, I had one -- my husband -- with me.)

Is there a restroom upstairs, I asked? No. There was only the one downstairs. 

Harrumph.

I thought I’d better use it before going upstairs. I would limit myself to one beverage   because I knew it would be a huge deal to get me down the stairs and back up. 

The ladies room had one disabled stall with a handwritten sign on it, saying “out of order.” I could not use any of the other non-accessible stalls.

I made my way back to the front of the restaurant and told the hostess that the disabled stall in the ladies room was out of order. Was there another bathroom in the place that I could use? 

Umm. She didn’t think so. She seemed thrown for a loop that I was even asking a question, any question. This one seemed to mystify her.  She asked another worker, who was equally perplexed. Then they brought out a manager, who told me there was no alternative restroom for ladies, but I could use the men’s room. 

Super.

He checked to see that that bathroom was empty, then waited outside while I used the handicapped stall. When I got out, I thanked the man for his help. He said to let him know if I needed to use the restroom again.

Yeah, right.

As the day progressed, the place would be more filled with beer-guzzling college guys who I’m sure would be thrilled to find their bathroom closed while I slowly used the only available handicapped stall in the joint. 

Upstairs, it was a wonderful reunion: filled with hugs and memories, pride in what we had accomplished and an undercurrent of sadness at how the newspaper business is in a painful decline. Of the roughly 100 people in attendance, several were older than me. Some had faced medical challenges, like I had. But no one else attending the event had limited mobility and faced the same roadblocks as I had.

Lucky them. If there had been anyone who used a wheelchair, they would not have been able to attend the party.

When the affair ended, two people helped me down the steps and my husband and I walked to my car. We decided to stop for dinner at a tiny, single-level restaurant near where we used to live.

Thankfully, the disabled parking spot was right in front and the restrooms were a few steps away from our seat. But when I finally got to use the single ladies room, I discovered it was not handicapped accessible. 

Really.

More recently, I attended a wedding in Phoenix. We stayed at a nice hotel in an accessible room. But the disabled parking spots were nowhere near my room. Of 40 spaces outside our building, not one was designated for a disabled person. And there were no curb cuts -- the slanted pavement where someone in a wheelchair or walker can transition from the lot to the sidewalk.

So even though there were plenty of empty spaces, if someone parked close to my room to let me in or out of a vehicle, I could not get up or down from the sidewalk. 

The nearest handicapped spots and curb cuts were at the end of my building, quite a journey for me as I pushed my walker under the Arizona sun. 

The wedding venue was a lovely outdoor restaurant/garden property that had two disabled parking spots close to where the event was taking place.

Yay.

Two large port-a-potties were available for guests to use. There were stairs leading to them, so they were inaccessible to me.  My friend (the mother of the groom) had checked out the venue in advance because I had previously told her about a lack of accessibility at another part of the facility.  A staff member showed her a single unisex permanent restroom that I could use. The staffer said it was accessible.

I found out the day of the wedding that it was not. 

It was a huge effort for me to get inside the small bathroom. I  knocked over decorations as I moved around the tiny room, squeezing the handles of my walker to make it narrower. (A mobility aid without this feature simply would not have fit in the room.) And the toilet was extra low to the ground with no grab bars to help someone like me get on or off the commode. I might still be stuck on the seat if I hadn’t planned ahead and brought a small portable toilet topper, discreetly carried in a fashionable zipped-up tote. But it was still a major effort to simply get up off the toilet with my weak legs.

Although the wedding and reception were absolutely lovely and lots of fun, I had to leave early because getting to and from the restroom (and on and off the toilet) was simply too difficult for me. I was worn out.

On one of our drives home, we stopped at a rest stop in California. The ladies’ room was temporarily closed for cleaning. We were directed to a back-up single room bathroom. It was available and handicapped accessible.

Yay. 

There were two large storage buckets in front of the sink and paper towel dispenser. 

Boo.

The door wouldn’t lock so my husband stood by, making sure no one entered while I was inside. While I maneuvered around the buckets to use the toilet, and contorted myself to wash my hands and dry them, a few ladies were gathering outside. I could hear them talking, anxious to use the only available public restroom.

Finally finished, I tried to open the door. It was stuck. Fortunately, my husband was right outside. I hollered at him through the door that I couldn’t get out. He tried to push while I pulled. It didn’t open.

I had a moment of panic and a brief vision of me stuck for hours in the hot bucket room with a mob of angry women outside, trying not to wet themselves.  

We pushed and pulled with more force and eventually got the door unstuck. If I had been in a wheelchair or on my own, I would not have been able to use the room.

Once freed, I made my way to our vehicle and we headed for home sweet home -- where I know the locations of the best accessible establishments. Yay.