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.  


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. 


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. 


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. 


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.


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.


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


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.