An unexpected holiday surprise - yet another fall

 ‘Twas the day before Christmas 2022 and all through the house, not a creature was stirring, not even a mouse.

But at 3 a.m. there arose such a clatter. Four strong creatures arrived - paramedics - to see what was the matter.

I had fallen getting out of bed to use the restroom, slamming my hip against my nightstand, knocking my shoes off, overturning my walker and splaying my legs beneath me. My husband, daughter and I spent an hour trying to get me up, then we decided to call for help. It took just a few seconds for three paramedics to get me upright and put me on the bed. 

The “I’ve fallen and I can’t get up” refrain from the old TV commercial has been an unspoken tagline of mine since I became disabled. While it was the subject of parodies and jokes back in the day, I no longer find the phrase amusing.

My disability knows no season or place. I can fall in the kitchen or on the street or in my bedroom no matter what the date or circumstances. I’ve taken at 16 spills since my non-Hodgkin’s lymphoma diagnosis nearly 18 years ago. They have resulted in trips to the ER, visits to urgent care, CT-scans and X-rays and several follow-up doctors’ appointments. Fortunately, since I finished my chemotherapy treatment and bone marrow transplant nearly 15 years ago, I’ve had no broken bones. Although I’ve had plenty of aches and pains and nasty bruises. The Christmas Eve tumble produced a bruise about the size and shape of Delaware, 

 

From the outside, I appear to be doing well after a near-miraculous recovery from cancer and a bone marrow transplant and for that I am forever grateful. But the truth is I struggle daily just to stay upright. I can lose my balance just standing around or when I go to take a step. I have neuropathy  (tingling, numbness and pain) in both lower legs and it has gotten worse the past few years. Also the strength in said legs has been diminishing. I have given up driving, I often need help getting up from a chair, and steps I could manage before are too high for me to ascend unassisted.

It’s not like I haven’t done my best to improve or maintain my strength, stamina and balance. Over the last decade-and-a-half I have sought help through medicine, regular exercise, aqua-therapy, acupuncture and multiple rounds of gait-and-balance physical therapy. 

I can imagine the shape I’d be in if I didn’t work so hard to improve my muscles and balance. My latest physical therapy sessions were ordered in 2021 after I had taken three falls in five months. 

The first spill was in at a darkened hotel room in Tucson, where I missed sitting on the bed and instead fell to the ground, managing to slam my head against the door and collapsed on a metal part of my tri-wheeled walker, gouging a bloody chunk out of my lower leg. 

The second was at a truck stop bathroom along Interstate 5 in central California as I was turning from the sink to the paper towel dispenser. It was a nice, clean restroom (a good place to fall, as public bathrooms go). A woman asked if I needed help and she corralled a man from the hallway to assist her in raising me up. I cut my elbow but didn’t hit my head.

The third was a doozy. I was standing on the asphalt at the LA Farmers Market, waiting while my husband bought something a short distance away. I had locked the brakes on what I called my all-terrain walker and shifted my stance to get more stable. It had the opposite effect and I dropped backward, falling like a tree, hitting my head hard on the pavement. I declined an offer of an ambulance and went directly to urgent care, where I learned I hadn’t caused any major injuries.

And so I went to six months of twice-a-week physical therapy sessions, trying to build my muscles and improve my balance. On the last day, the therapist assessed my progress, measuring my strength, timing my walk and making calculations. 

I asked what the results showed. 

“Well, you didn’t get any worse,” she said. 

Quite the endorsement for all that effort. 

A few days before my Christmas Eve fall, I had mentioned proudly to a friend that it had been eight or nine months since I had taken a tumble. I joked about putting up a sign like those in businesses that say “X number of days without an accident.” Way to jinx myself, some would say.

Ever the optimist, I seek the silver lining in each of these cloudy stumbles. I try to look at each fall as a learning opportunity, something I won’t do again. I have realized my disabled self cannot just walk like a normal person. My legs and feet don’t work like they should.

Lesson 1.  Concentrate on deliberately walking (heel, pad, toe) and lifting your feet. Any distraction, such as pointing out a lovely flower or bird while outside can make me lose my balance. That happened on a Santa Barbara sidewalk when I crashed to the ground a couple of years ago. My husband and a young man who happened to be walking in the crosswalk toward us helped me up. 

Lesson 2. Put your brakes on if your walker has them or have someone hold on to your walker as you navigate a step or slanted terrain. My worse fall occurred in 2012 when I was headed out my front door with a friend to go to lunch. I lifted my tri-wheeled walker over the threshold and it rolled out ahead of me. I slammed my face into the concrete, breaking my glasses, cutting my face and leaving a large lump and horrible bruises.

Shortly after my porch fall

A few days later 

Lesson 3:  Keep your phone with you at all times. I figured this out when I fell in our small half bath turning from the sink to the towel rack. Fortunately I had put the house phone in my walker pouch because my sons were due from an out-of-town trip that night and carried it in case they called. The towel rack and I crashed to the ground. I maneuvered around a tight space to reach my phone, and summoned my husband to help me up. I later learned to pack my walker with more in case I fall again.

Lesson 4: Injuries may not be immediately apparent, so be vigilant. What I’ve come to call the Spanx Incident occurred during my first (and last) attempt to put on Spanx shapewear. With the torturously-tight stockings almost on, I walked gingerly to my dresser to fetch another article of clothing. I tumbled, brought down a computer desk and a stereo system. After a friend helped me up and gathered the debris, I didn’t see or feel any physical damage and finished getting ready. Off we went to a festive book club holiday luncheon. That night when I took off my shoes, I discovered a very bloody and very swollen left big toe. When I went to the doctor the next day to see if it was broken, he said it was not, just smashed. And he told me, “The good news is you can’t feel your toe. The bad news is you can’t feel your toe.” A year after that spill, I managed to break another fall in the kitchen with my right hand. I did a jungle crawl to reach my phone and called my husband for assistance. I had no visible injuries so we proceeded with our neighbors to what I thought was a dinner for the four of us. It turned out to be a surprise party planned by my husband to celebrate my fifth birthday, post stem-cell transplant. I spent much of the rest of the day in tears and in a kind of shock, seeing a room full of family and friends who had traveled from all over to celebrate with me. It wasn’t until the next day that I woke up to find my right hand swollen to baseball glove size and unusable.

Hugging a friend at my surprise party 
oblivious that I had injured my right
hand 

Lesson 5: A smart watch is a necessity. It provides a nice alternative to the device the “I’ve fallen and I can’t get up” commercial was trying to sell. I can send messages or make calls on my Apple Watch just using my voice. And because it is waterproof, I can (and must) wear it in the shower. I learned that rule after a ceiling-to-floor caddy collapsed on me mid-shower, opening the door, spraying water all over the bathroom. I was trapped on my shower bench, unable to reach the faucet. Fortunately, my husband was home and I was able to holler loud enough for help. Now, I don’t take a shower unless someone is home with me and I am wearing my charged Apple Watch. 

Lesson 6: Always wear non-slip socks to bed in case you have to get up in the middle of the night to use the bathroom. Add a grabber by your bedside so you can move too-far shoes closer. On Christmas Eve at 2 a.m., I sat up in bed and tried to slip into my shoes.  It wasn’t dark. I made sure I had a nightlight on, particularly after the Tucson fall. But one shoe moved further away the more I tried to get it on. When I stood up to try to reach it, my sock slipped on the bedside rubber mat (which I use to help me get in my bed and to prevent slipping on the floors). I crashed hard against the nightstand. My body was in such a position that my two helpers couldn’t raise me up and we couldn’t get a foot underneath me on the mat to help me stand. What I needed was a couple more strong people. (My husband had recently hurt his back so I didn’t want to make it worse by wrenching me up.) We could have called friends or neighbors but I didn’t want to wake them up at 2 a.m. Christmas Eve. Thus, the 911 call. 

I didn’t break anything, as a later visit to urgent care proved. I have had osteoporosis since I was 49 - caused by massive amounts of prednisone beginning early in my treatment - and my oncologist says I could easily break a hip with a minor fall. Multiple falls later, I have not broken a bone. Perpetual knocks on wood. And some credit should go to Prolia, the high-dollar bone-buildingmedicine injected into my arm every six months. The drug is currently causing me other problems, but that’s a topic for another day.

Back on Christmas Eve, when the firemen had taken my vitals, filled out the paperwork, and finished their job, we thanked them profusely.

“Merry Christmas,” one of them said, cheerfully.

And to all a good night, I thought. I am hoping for a more stable new year. It’s been 44 days without a fall. 

 

Toenail Joy is Essential in Sickness or Pandemic

A few weeks ago, before salons were shut back down again due to COVID-19, I got a pedicure for the first time in months. Because I almost always wear closed-toe shoes, very few people get to see my neatly-trimmed peachy-pink toenails.

But I do.  

And they make me happy.

I learned the importance of toenail joy during my grueling three-year battle with cancer.

At times, I had multiple lines coming out of my body and tubes in my nose and mouth. At one point, my arms were swollen and the color of eggplant. My hands had to be restrained so I wouldn't pull out my tubes. After a brain biopsy, the quarter of my head that was shaved sported a nasty scar. Paralyzed from the waist down, I couldn’t control my feet, even to hold them upright as I lay in bed. Machines massaged my legs to prevent blood clots and my feet were attached to braces to keep them in place and prevent them from flopping to the sides.

But through it all, my toenails looked fabulous.

That made me happy.

My friend Mary came up with the idea, bringing a portable pedicure kit with her from Northern California to my hospital bedside. I remember worrying for a second that the strong nail polish aroma would annoy my roommate. (But it was only for a second, because she had been complicit in smuggling in several kittens into our room, so she had already tested the hospital roommate etiquette limits.)

Months later on a return trip to a different hospital, Mary gave me another pedicure. Because I was in a hospital bed at various facilities for four-and-a-half months unable to walk, my frame of vision was limited. I couldn’t see or do much, but I could see my toes. If they had resembled toenails a la Howard Hughes, it would have depressed me more than I already was. After months in the hospital, I learned health aides will help you with a lot, but pedicures was not on their list of services.

My peachy-pink toenails today

When I was released from the hospital to my home, I had a home nurse who was a godsend. Skilled, trustworthy and kind, she would help me with all sorts of things. When I learned she could transfer me into my wheelchair and help me into the car to take me to my doctor’s appointments, I had another idea.

Sure enough, she was able to take me to my local nail salon for periodic pedicures. I couldn’t get in the spa chairs which are part of the luxury package. I sat in my wheelchair and put my feet in a tub of water. It seemed luxurious to me.

For about a year after being released from that lengthy hospital stay, I had to return one week a month for more intensive chemotherapy. One time, a female doctor came in to check on me. She chatted with me, listened to my heart and lungs and checked my extremities. When she got to my feet, she said, “Nice color.” 

“Thanks,” I said proudly. “I always like a peachy-pink or coral.”

She looked confused.

“I was talking about the color of your feet. It shows that your circulation is good.”

I guess that was good news.

Three years after my non-Hodgkins lymphoma diagnosis, my cancer returned. I needed a bone marrow transplant.

 Ugh.

I could finally walk (with a walker), my hair had grown back and I was getting back to my new normal life when I got this news. I knew nothing about transplants and didn't know anyone who had ever had one. I learned it would entail stronger chemotherapy sessions (seven times the amount I had before), total body irradiation and a month in the hospital feeling the sickest I had ever felt.

I was given a thick booklet to explain the lengthy carefully-orchestrated process.  And I was assigned a transplant coordinator nurse to answer all my questions. 

I dutifully read through all the information. I was nervous about all of it, including the description of the hospital stay, the restricted diet while in and out of the hospital and a no -contact-with-pets rule. But if it meant saving my life (and it did), it was necessary. But there was one requirement that annoyed me.

Nail polish was prohibited. 

When my transplant coordinator called on the phone to answer any questions I might have, I asked her about the nail polish rule. Even on toes? 

Yes, she explained. Doctors could tell a lot about your health by looking at your nails.

What about clear nail polish? I asked.

Well, she said. That would be OK.

So during my transplant, I lost every hair on my body, I had excruciating mouth sores that made it nearly impossible to eat and I had an allergic reaction to an intravenous antibiotic that created itchy red welts all over my swollen face and body (my Jabba the Hutt phase). I was too weak to read or focus on a TV show. I threw up many, many times, and I became crazed and hallucinatory after frantically pushing the button of my self-administered morphine pump. 

But my toenails looked fabulous.

And that made me happy.

Also, the transplant -- almost 12 years ago -- saved my life.

That makes me very happy.

  

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.

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.