Smile Therapy

😊 I have long been a bottom-line kind of guy, a value instilled in me early and often by my mother. Among her favorite aphorisms was “the operation was a success but the patient died.” I interpreted this to mean “don’t sugarcoat your failures.” You either reach your goals or you don’t, and you’re fooling yourself if you think there’s any in between. This is the way the world works, and the seriousness of the situation warrants treatment of the pretty scenery along the way as a dangerous and unwelcome distraction that may lead to never reaching your destination.

😊 In my school days, this meant ignoring my friends (“They’re not your friends, they’re your playmates!”) and their fads and fashions, and going my own way. Who cares if they fail, my only concern should be my own success.

😊 This type of goal-oriented worldview makes it difficult to focus on the present. From what I’ve read, “living in the moment” is essential for good mental health even in the best of circumstances. As hard as this has always been for me, a cancer diagnosis has made it nigh well impossible.

😊 I seem to be confused as to which stage of grief I should be in. My natural tendencies are to skip over all the denial and bargaining malarkey in favor of going straight to acceptance. I am always saying “it is what it is.” Facts are good.

😊 Except that the experts say this cannot be done. You have to do the steps. I may be engaging in an effort as futile as riding a self-actualization catapult to the apex of Maslow’s pyramid while perishing of hunger and thirst.

😊 This in no way inhibits my “acceptance” stage pull toward making arrangements. My wife and I recently made wills. I found the cemetery where I wish to be buried and talked with them about a traditional burial and the costs involved. I just want to go down there, sign the contract and hand over the money. I want it done.

😊 My wife accuses me of having given up, and I see her point. While that is not my intent, I don’t want any truck with dishonesty games either. The problem is that not all the facts are in yet. I am still undergoing tests. I plan to do whatever treatment is recommended. And the thought of being a cancer survivor brings a smile to my face. Indeed, the very act of smiling has begun to take on meaning of its own for me. This is no small thing, as my natural disposition might best be described as “grumpy.” Insert ghosts of Lemmon and Matthau here.

😊 So, at least at this point, I cannot agree with my wife’s assessment that I have given up. I pray daily and have others pray for me. And I practice what I have dubbed “smile therapy.” Eye roll, I know. I smile at myself in the mirror every day, just to remind myself that I still can. That anything is possible. Smiling as an act of defiance.

😊 Smile therapy has become particularly important to me in light of my twin bogeymen, pain and the narcotic medication being used to relieve it. My continued ability to work from home has been essential as well. As I explained to my boss the other day, work takes my mind off things.

😊 I thank God for small blessings. And I try not to fixate on those aspects of self-care that I could recently handle and that have become extremely difficult for me in a matter of just a few weeks. I refer to basic tasks such as lifting my right leg to climb into the car or into bed. Some days I can do it, but on others, my muscles go on strike and adamantly refuse. I would be totally out of luck if not for the assistance of my patient and long-suffering wife.

😊 I am tired all the time. Granted, I was never a high-energy person, even in my younger days. Now, however, I am learning to accept a new normal in which taking a shower uses up about every ounce of energy I possess. We ordered a shower chair, and I eagerly anticipate its arrival. I am able to work a full eight-hour day at my computer while seated in my armchair, getting up only to use the rest room. When 5:00 rolls around, I have just enough left in the tank to undress, get in bed, and be out like a light.

😊 Most of the layers of my onion have been peeled away. It makes for a much smaller world. I can only imagine that this will be exacerbated once I begin chemotherapy. I’ll just have to laugh while singing the “It’s a Small World” song from Disneyland (perhaps vomiting in between the repetitive verses).

😊 I do not believe that acceptance of all I have described means that I have “given up.” As I recently explained in decidedly terse terms, “it sucks, but it is what it is.” Denial would be pointless, and I certainly don’t have the energy to bargain as if this were some type of contract negotiation. No rageatar, por favor. For me, acceptance is where it’s at.

😊 But you know me. I need to have a goal. And I do. I want that Cancer Survivor shirt, size 4XL.

😊 Until I get it, I’ll keep right on smiling in the mirror.

😊 Just don’t tell anyone, please. I wouldn’t want to ruin my reputation.

Praying for Parking

Now that it’s late September, I drive to work in the pitch blackness of the pre-dawn morning. Soon, I’ll be driving home in the dark as well.

I’ve developed a routine. On the way home, it’s all about staying awake, particularly if I have been at work ten or eleven hours. That means only one thing: It’s karaoke time. I plug in my phone, blast my tunes and sing as loud as I can. Okay, I’m stretching the truth a bit here. I don’t believe that anyone in his or her right mind would characterize the caterwauling emanating from my mouth as singing. Is it possible to scream a song? Even a country song? I think it’s time for me to get into heavy metal in my old age.

My morning commute, however, is quite different. For one thing, I need to pray for a parking space. Dear Lord, lead me not into Natomas.

I work in Sacramento’s Twin Towers, where there is exactly one handicapped parking space for four thousand employees, never mind visitors. When I first obtained my blue handicapped parking permit years ago, I never imagined that I would have such a difficult time making use of it.

The surefire way of snagging my parking space is to arrive at work by 5:30 a.m. As sensible a solution as this may be, the problem is that I am a lazy ass who prefers to sleep an extra hour. Arriving at work at 6:30 or 6:45 a.m. is a dicey proposition indeed. It’s a big game of chicken. Sometimes my parking space will still be available. (Thank you, Lord!) More likely than not, however, I will round the corner from Q Street onto Eighth, only to find a giant SUV sitting in the handicapped spot, jeering at me. The early bird does indeed get this particular worm.

So what now? I’ve often wished there were valet parking at work. Instead, most employees who don’t use the bus or light rail end up paying hefty monthly fees to park in a garage or lot and then have the pleasure of walking blocks to work in the heat, the wind and the rain. If you can’t make that walk, you’re pretty much out of luck.

I knew I had to come up with a strategy, replete with alternatives. They are as follows:

1. Pray. Thank God for his many blessings and ask for one more, that I arrive at the handicapped space five minutes before someone else tries to slide into it.

2. Hope that one of the metered parking spaces that line the block across the street is available. With my handicapped permit, I can park there all day without the need to run out every hour to feed quarters into the meter. All I have to do is wait for traffic to clear, then roll my lunch bag across Eighth and grab a pole (or the hood of another car) to haul myself up onto the opposite sidewalk.

3. If both of the above fail, park behind the handicapped spot in a “loading zone only” space and wait. Keep an eye out for someone dashing across the street (or up the street from the gym) in preparation for pulling out of a metered space across the street. This requires patience and more than a little luck. Like a cat, I may need to stalk my prey for an hour or more. My official start time at work is 8:00, so I generally have enough leeway to pull this off. However, all I have to do is lose focus for a moment, and another car will come careening around the corner, turn signal on to let the world know that, by golly, he is claiming the about-to-be vacated space for himself. Also, it happens from time to time that a 60 or even 90 minute wait will not yield a vacancy across the street. That real estate between the little white lines is valuable.

4. Stay parked in the “loading zone only” space that I’ve staked out and pray that Parking Enforcement doesn’t come around before 9:00, at which time the space becomes legal. Run out of work before 4 pm, when the space turns into a pumpkin again.

5. Go to Natomas, the nuclear option. This involves driving 20 minutes to the northern suburbs of Sacramento, leaving the car in a supermarket or department store parking lot, and getting on the Uber app to call for a car to take me back downtown. I get to pay for this privilege again when I leave work in the evening. So far, I have managed to avoid the Natomas option but, prayers notwithstanding, it seems just a matter of time.

6. Call into work and go home. Now you’re talkin’.

Grab Bar Follies

The Reno strip at night. The Eldorado, Silver Legacy and Circus Circus are all connected by interior walkways. In the background at left is the famous Reno sign (“biggest little city in the world”).

RENO, NEVADA

We recently returned from a quick weekend getaway to Reno. The idea was to relax in front of the video poker machines at Baldini’s, our favorite locals’ casino across the river in Sparks, Nevada (Rock Boulevard at Glendale Avenue). The buffet is long gone, but Baldini’s has a popular 24-hour café known as the Empire Diner (excellent food, large portions, great service, and half the price of the restaurants in the hotels on the Strip). They also have a taphouse with pub grub and a little sandwich place called The Brickyard on the casino floor. We love Baldini’s!

Alas, the Baldinko does not have an attached hotel, so we stayed at the Sands Regency just off the Strip. We have been here many times, mostly due to their promotions that keep things affordable. This time, we paid for Saturday night and got Friday night free. The Sands is an older hotel, badly in need of modernization. Hence, the promotions. The place is huge, with accommodations spanning three high-rise buildings.

The Sands at night, with a view of one of its restaurants, Mel’s Diner. I admit to enjoying the ability to chow down on oatmeal and fried potatoes at three in the morning while listening to the Flamingos and the Chiffons (shoo-bop, shoo-bop).

It had been a year since we last graced the Sands with our presence, and I had completely forgotten what you get for the cheap rooms: Horrible parking, pricey food, Saturday night crowds, and downright stupidity when it comes to reserving an “ADA room.”

Compliance with the federal Americans with Disabilities Act of 1990 requires most hotels to make a certain percentage of their rooms accessible to those with physical disabilities. This encompasses a wide variety of accommodations, from having fire alarms with visible strobes for the deaf, to making doorways wide enough for wheelchairs to fit through, to providing roll-in showers. While new hotels are built to ADA specs, older establishments like the Sands limp along on a few barely adequate retrofits.

I have learned from hard experience that about the best you can expect at the Sands in terms of accessible bathing is a tub with a grab bar. Well, if you happen to be in a wheelchair, then good luck to you. You’d better be traveling with someone strong enough to lift you in and out of the bathtub without injuring themselves. As for myself, so far unfettered by a wheelchair, the difference between being able to bathe or not frequently hinges on the height of the tub. I no longer have enough strength in my legs to lift them up high and swing them over the side of a tall tub. Most of us take this maneuver for granted, but it is an insurmountable obstacle for me. The Sands plan seems to be to reach into the tub, hang onto the grab bar for dear life, and haul yourself into the bath on the strength of your arm and back muscles. You’ve got to be kidding. I mean, really?

For me, the bottom line is that if the side of the tub is more than a few inches high, no grab bar is going to help. At the Sands, I struggled mightily to lift myself into that tub by contorting my body any way that I could. The end result was that I pulled a muscle in my back, spent the remainder of the weekend hobbling about hunched over, and stank like a vagrant. You simply can’t clean your body very well with a washcloth, at least not without flooding the bathroom.

Next stop is Oregon for a Scrabble tournament. Why am I surprised that the host hotel has no walk-in/roll-in showers? This weekend, I will be shopping for a basin large enough to stand in while I’m giving myself daily sponge baths. And lots of deodorant.

As for any of my esteemed opponents bowled over by my nasty B.O., kindly keep it to yourselves. Just hold your tongue while you’re holding your nose over there across the board.

ADA or no, traveling will always be a challenge for those of us with disabilities. The best we can do is to keep the dialogue going and let hotel management know in no uncertain terms that our needs are not being met. We will be heard and we will be seen. And come what may, we will travel the world for work and for play. Our days of staying at home and hiding are over.

On Traveling with a Disability

The fact that traveling with a disability can be a challenge is nothing new to millions of people around the world. Some hotels will bend over backward to accommodate you, others will give you the stink eye, while still others will be utterly dismissive as if you are a nuisance and not a paying customer.

Where it gets really tricky is when you have a “hidden” disability. Hotels may not recognize that you have a disability unless you come right out and tell them. Even if you don’t feel embarrassed or uncomfortable doing so, you never know what type of reaction you will elicit. Some staff will think you’re trying to scam something for free or that you’re unfairly monopolizing the hotel’s resources.

For example, you’re a lot more likely to get what you need if you roll through the front entrance in a wheelchair than if you walk in on your own two feet and explain to the clerk that you have limited capacity for ambulation. Visible disabilities are one thing, but less obvious conditions may have to be explained. If your disability is not immediately apparent, there is a reasonable chance that you will be barely tolerated as some type of faking miscreant.

Granted, even the wheelchair-bound will be mistreated in some places. There will always be those who believe that we, the disabled, should just stay home and avoid appearing in public lest we make someone uncomfortable. After a while, you come up with techniques of suppressing your ire and politely expressing that you’re not looking for special treatment and certainly don’t want their misplaced sympathy. Just comply with the Americans with Disabilities Act, would ya?

When traveling with a disability, there is no substitute for advance planning. As a frequent business traveler, I enjoy the distinct advantage of the services of secretaries and other support staff at my place of employment who will patiently make my travel arrangements. When necessary, they will yell, threaten, cite the ADA and demand to speak to management. I am truly blessed to be insulated from this crap. Our support people are worth their weight in gold, and then some.

No amount of planning, however, will guarantee that what you reserved will actually be available when you reach your destination. You get out of the car and say a little prayer as you approach the lobby, hoping that everything will go smoothly and all you’ll have to think about is how to best explain that one tricky concept during your presentation tomorrow.

Some hotel chains are more reliable than others when it comes to accommodating disabilities, and after a while, you know which ones can be counted on and which ones cannot. Bill Marriott, wherever you are, take a bow for your hotels’ reliability and for your unfazed staff. Ditto for the Westin and Holiday Inn Express. Other places, not always so much. Names withheld to protect the guilty.

Most of us with disabilities have a pet peeve or two related to our particular limitations. In my case, it’s reserving an “accessible room” or “ADA room,” only to arrive and find a bathroom with a wide doorway that accommodates wheelchairs — and a shower inside a bathtub that is so far off the ground that there is no chance whatever of me being able to lift my legs high enough to get in. So what do I do now? Find another hotel at the last minute, or endure three days of sponge baths? I hope I brought along plenty of deodorant and Ammens powder. By the time I get to the third day, my poor trainees are going to be holding their noses and gagging. Is it too late to teach this class via Skype?

“But this is our only available accessible room,” the desk clerk will demur when you ask to be moved. “That’s what you reserved, right? Did you see that the shower has a grab bar?” You want to cuss a blue streak at everyone and everything, including the desk clerk standing before you, the secretary who made your reservation, and the bad luck that left you with a disability in the first place, even though none of them had anything remotely to do with your current predicament. Instead, you smile sweetly and squeak out the words “okay, I guess I’ll make it work.” You count your blessings, thanking the Lord that you’re not blind or a paraplegic. Take deep breaths. Perspective, dude.

Later, you may learn that the hotel has another room with a roll-in shower, but the staff failed to mention that fact when the room was being reserved because someone else had already booked it. And, sooner or later, you will reserve a room with a roll-in shower only to find that the hotel gave it away to someone else who arrived 15 minutes before you did.

You learn to grin and bear it. After all, horror stories are more than balanced out by the trips that achieve textbook perfection. And so today I raise my glass in a toast to those hotels that are scrupulously honest about what’s really available and what isn’t, that honor their commitments, and who treat those of us with disabilities of any type as valued customers and fellow human beings. You engender the undying loyalty of road warriors the world over.