No Bruce for you! How this disabled fan overcame inept, unhelpful employees to see the Boss

It was the best of venues, it was the worst of venues.

Not long ago I went to two amazing concerts within four days. I saw Melissa Etheridge at a local community college and Bruce Springsteen at a larger out-of-town venue. 

One place went overboard in making sure the event was accessible to me with my walker and the other one could not have been worse. And to top it off, our ride from the hotel to the concert at the out-of-town show was a shuttle bus from hell. Not for the other passengers, but definitely for me and my friend. 

The first venue was the College of the Canyons Performing Arts Center (PAC). The staff and volunteers at the PAC an intimate venue with nearly 900 seats, have always done a wonderful job accommodating disabled patrons. I gave them a shout out in a blog post in 2012 for being a place that went out of their way to be accommodating. 

 Since then, it has gotten even better. Upon entrance to the lobby, I was ushered by a volunteer to a woman who was the accessibility concierge, standing at a podium a few steps away. Did I know where I was sitting? Did I need any assistance? I showed them my ticket and said that first I needed to use the restroom. Did I know where that was? Yes, I said, as I proceeded that direction with a friend. It was as if every attendant had been trained to look for disabled guests and to rush to their assistance. I was helped to my seat, assisted with fitting into a crowded row and was told they would take my walker away but to give them a wave if I needed it during the show. I did not. At the end of the show, a few helpers showed up immediately and assisted me in standing up and getting to my walker. 

 

Melissa killed it.

 I knew the Springsteen concert at the Kia Forum in Inglewood would be a challenge - involving a drive, overnight accommodations, transportation to and from the concert and getting to an accessible seat in the venue itself. And the Forum is pretty big - it can hold more than 17,000 fans - so just finding my way to the show was going to be a challenge. I always plan ahead and make advance phone calls to make sure things will be as easy for me as possible. I have used a walker for nearly 19 years since cancer  ravaged my body and brain and have seen varying degrees of accessibility over the years - although ADA compliance should be an indisputable standard. 

 The first obstacle was in securing tickets for the event. I had done my online research and learned that if I could only buy inaccessible tickets they could be exchanged by the venue for accessible seats. In the frenzy for post-COVID Springsteen tour tickets, I was thrilled to score two regular seats - nosebleeds - and the instructions were to call the Forum a day after tickets went on sale to speak to a person in the disabled assistance office. When I did that, I was told exchanging my tickets for accessible ones only applied to the day of the concert. Yeah, right, I’m going to book a hotel, travel more than an hour on the off chance there is an accessible and companion seat available. Then she asked “Do you want to buy accessible tickets?” Um, yes. She sold me two, even though Ticketmaster didn’t have any the day before. They would be available at will-call the day of the show. I sold my original seats to an able-bodied Springsteen fan.

 I called the hotel ahead of time to ask if it had a shuttle bus to take us to the Forum. The concierge said the hotel did not have one, but told me about a tour bus service available to take us to and from the concert. Perfect! My husband had driven us to the hotel and would pick us up the next morning. 

 Ever the planner, I called LA VIP Tours to see if their vans were accessible. One aftereffect of my cancer battle is neuropathy and weakness in both legs. They’ve been getting worse the last few years. I cannot walk long distances or go up stairs unless they are very low. Even a ramp is tough for me to navigate. “Do you need a wheelchair lift?” asked the gentleman at LA VIP.  That would work, I said. “We’ll get you up there.” Perfect. For $45 each round- trip, the van would take us to and from the show. I selected a 5 p.m. pickup time - the show was at 7:30. 

 Armed with maps of the concert venue and seating chart, I made some calls to ensure the experience would go smoothly. Because my accessible tickets were available at will-call, which I noticed was “at the top of the ramp”, I called the Forum’s disability service number the day before the show. Was there any way they could email me the tickets? No. Was there any way my friend could pick up the tickets using my ID and credit card so I wouldn’t have to go up the ramp? No. And I asked where I could be dropped off. At any of the entrances, she said. 

 I also wanted to know the location of  the stage, so I could know which exit or entrance to use. The seating map clearly showed it on one side and I knew my seats were ground level - across the room from the stage. This question seemed to flummox the aid. “The stage is in the middle,” she said. Um, no it’s not, I responded. The seating chart clearly shows the stage is on one side of the arena.

 I placed another call to the shuttle office. Did I have to request a van with a wheelchair lift? Do you use a wheelchair? the woman on the phone asked. No, I use a walker but I can’t go up stairs and the lift would work fine. “You’ll be able to go up these stairs,” she said. “They are very small steps.” 

 The day of the show, we made it to our hotel about an hour before pick-up. In keeping with the comedy-of-errors theme of our trip, the lady at the front desk said our room was not accessible even though we had reserved one. I had brought my emergency non-accessible room aids - a step stool and a toilet topper - because it wasn’t the first time a hotel messed up on accessible quarters. 

 They gave us keys to the room and, surprise: it was accessible. My husband took a photo of my friend, Norma, and me in the hotel room happily looking forward to the show….little did we know we would face obstacle after obstacle before a note was played.

 Outside the lobby, the van arrived right on schedule and I nearly cried when I saw how high the steps were to climb on board - higher than any stairs I had ever seen. My husband went to the room to get the step stool and with the help of three people, I was able to get up Mount Everest, I mean the VIP van stairs. We decided to leave the stool with the van driver Jesus for my return trip. After a four-mile ride, our driver pulled over not at one of the entrances, but at least 1/4 mile away across a nearly vacant parking lot. You are kidding, I said. We asked Jesus if he could just drive me closer after the other Boss fans in the van had disembarked. No, he said. Norma talked to a nearby Forum employee tending to the lot. Did they have a golf cart to get people with mobility issues closer? No, he said. 

 Jesus gave us a flyer showing where we were dropped off (the yellow star in the middle) and where we would be picked up (the other yellow star after we exited using the red arrow pathways).

The walk to the van after the show would be twice as long as the one I took upon drop off. It was across two busy streets at what would be nearly 11:30 at night. I walk at a turtle’s pace, so I would need super powers to get across those streets containing thousands of giddy fans heading home. If I didn’t survive the trek, arrangements could be made right away, because the van would pick us up between a cemetery and a flower shop. Usually, I replace my walker with a wheelchair if I know I have to walk a long distance - but my calls led me to believe I could be dropped off close to the entrance. 

 Trudge, trudge, trudge. We thought maybe we were in a Punk’d episode when we interacted with uninformed employee after uninformed employee. We asked directions to will-call and were pointed in one direction. Turtle-step after turtle-step, we didn’t see a clear path to the booth. We asked a second employee and they literally pointed the opposite direction toward the area where we had just walked. Turtle-step after turtle-step, we reversed our course and began to doubt the second employee’s guidance. We asked a third person and they sent us the opposite direction again. We were to keep going until we saw a black tent. That would be the will-call. 

 Trudge, trudge, trudge, crowded line after crowded line. We had been dropped off at the Kareem Court lot, on the exact opposite side of the box office. We finally got to the will-call booth under the black tent. It was the wrong will-call booth, only for VIPs. The correct one was up the dreaded ramp. 

 I found a solitary bench up the ramp where I sat after we retrieved our tickets. The arena doors were not yet opened, but fortunately there was a patio where we could buy food and drinks and relax before we got inside. We didn’t see any chairs. The guard at the entrance told Norma it would not be a problem to grab our food and then sit on the will-call bench to eat it. I went inside to select our fare, left Norma there to wait in line, then I tried to go outside the gate to the solo bench. The guards at the gate said I very definitely could NOT do that. No leaving the patio area once you are in. 

 I summoned Norma and told her the bench plans were no more. We set our tacos on a ledge next to the trash bins and I had to stand and lean against the ledge to balance while I ate my taco.

 When the arena doors finally opened, we had to use the restroom. The hallways were jam-packed and as we inched along, we faced a sea of humanity in line to use the ladies’ room. Usually I can politely make my way past, explaining that I’ll be using the disabled stall (which they should not be using) but it was too crowded to make any headway. 

 Then, the only nice staff member we met all night approached us and said there was another accessible restroom just down the hall and if we went to the guy in the suit, he would take care of us. Woo hoo! 

 Trudge, trudge, excuse me, sorry, trudge, trudge. 

 We passed a woman in a wheelchair complaining that the Forum needed to do a better job of accommodating disabled folks. 

 We finally got to the man in the suit. We told him we heard he could help us find the accessible restroom. He was visibly annoyed. We quickly realized he must have hated his job so much, there was no way he would voluntarily assist us in any way. Well, he said, you have to move there to the end of the line, which we did. And then, he told us to back in another inch and another inch. I expected him to say “NO BRUCE FOR YOU!” if we stepped across the imaginary line. When we finally got to the beginning of the line, he pointed to two accessible single-toilet restrooms. He gave Norma the third degree when she wanted to use the other toilet, like she was supposed to leave me there and get back in line for the first restroom we saw. 

 We took an elevator down to the floor level. Just as I’d feared, we had arrived at the opposite end of where our seats were in the arena. Trudge, trudge, trudge. We got to our floor level seats — on a slight platform with a wheelchair lift - 10 minutes before showtime at 7:30. We had left our hotel (I repeat: four miles away!) at 5 p.m. 

The wheelchair lift broke down about two hours into the show. I know because I had to use the restroom and it worked on the way down but when I came back it wouldn’t budge. It was quite a task to find someone who could fix it. Three guys who were using the lift as a bar top for their beers offered to carry me up the stairs. I declined. We finally were able to find an attendant who could jerry-rig it so I could get back to my seat. This was not an intermission. We were wasting valuable time, fussing with the lift rather than enjoying the concert.

  

The show was spectacular. 

 Before it was over, we decided we would not use the shuttle because it was just too far away and I dreaded going up the massive stairs again. And my legs were extremely tired. We planned to call an Uber, Lyft or taxi to take us the short trip back, eat the $45 and leave my handy step stool behind. We asked for assistance to find where the ride-shares or taxis picked up and we were met with another round of incompetent, unhelpful employees, pointing every which way. One even suggested we go out to the street and summon one from the sidewalk. We trudged to the opposite side of the building where there was Lot H, dedicated to ride-sharing services. We couldn’t book one for less than an hour wait. There was no place to sit. 

Just then a rogue car emerged from the lot with the driver’s window down, “Anyone need a ride?”

He was a freelance ride-share driver who charged us $80. He said other ride services would charge us a minimum of $150 after a big concert like this one. He said he is very aware of the needs of the disabled, because one of his legs was amputated above the knee. As I put my seatbelt on in the front seat, I silently hoped it wasn’t his right leg. He also showed me where I could scan to download a website so I could buy cosmetics from him! Ummm, no thanks. I just wanted to get back to our hotel. 

 He got lost along the way and when we eventually pulled up to our destination, he forced us to give him a crazy high tip. We were just happy he didn’t kidnap or kill us. All told, we spent close to $300 to be shuttled to and from our hotel to the Forum, including two tips to Jesus. 

Did I mention it was a FOUR MILE DRIVE? 

 There are three things I learned from this adventure:

1)  I will never go to the Kia Forum again. 

2) I will never book another trip with LA VIP Tours.

3) Venues should learn from the College of the Canyons PAC - whose event staff is mostly volunteers - when it comes to accommodating people with disabilities. A little bit of training is all it would take for event workers to be aware of and kindly help those of us who need it.

If Springsteen ever plays the College of the Canyons PAC, I will be there in a hungry heartbeat.

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. 

 

Beach wheelchairs are everywhere. Who knew?

I went to the beach this summer. I relaxed in the sand, just feet away from the water, watching children and adults and dogs having a wonderful time walking, playing, digging, relaxing, wading and swimming.

Occasionally, I would close my eyes, take a deep breath and drink in the soothing sounds of the waves.

That might not seem like a big deal to many, but it was to me. I’ve lived in Southern California for nearly 20 years and I hadn’t been that close to the surf since 2014.


Because I am disabled and have depended on a walker since 2005, sand is not my friend. “A day at the beach” does not connote ease or relaxation. For me, that phrase signifies frustration and a bit of mourning for what I am no longer able to do.

But this summer, I discovered beach wheelchairs.

Hallelujah!

With an asterisk.

Yay to their availability and affordability.

Boo to the fact that their existence is news to many, including the people who can use them and some staff at the beaches. And another boo to the cumbersome borrowing process and difficulty of getting into an accessible restroom from the monster truck version of a wheelchair.

A California girl, I cherished the proximity of the ocean and have many fond memories of days at the beach in northern, central and southern parts of the coast.

When I became disabled after my horrifying battle with cancer, I realized my limitations and resigned myself to enjoying the view from a car or sitting on a bench near the sand.

I learned on Facebook about Sabrina Cohen, a woman in Miami Beach who was working to make beaches accessible for the mobility-impaired. I commented, “We could use you in California.”

In 2014, I had my last close-to-the-surf excursion. I was determined to explore the possibilities of using my walker at the beach. My husband, who has helped steer me through non-Hodgkins lymphoma, a stem cell transplant and disability, packed in the car two of my walkers, foldable beach chairs and a blanket. When we got to Zuma Beach in Malibu, he guided me as I trekked unsteadily through the sand, lifting my walker step-by-step. I worried sand would somehow ruin my mobility aid. When I got to a midpoint in the sand, I transferred to a beach chair for a few minutes and then lay down flat on the blanket blissfully.


I don’t remember how I got up, but my husband must have put forth a Herculean effort. In the ensuing years, my muscles have weakened so that I often need assistance just getting up from a regular chair (from two people if possible). So I’ve scratched lying in the sand from my to-do list.

I did make a mental note when I saw an article somewhere that said a beach in Ventura had accessible wheelchairs available. I never investigated it further until this summer after learning relatives and their grandchildren were planning as visit and they wanted to go to a beach. A quick computer search led me to the San Buenaventura State Beach website which explained how to reserve a wheelchair free of charge over the phone.

We planned a trial run on a weekday when crowds would be minimal. The day before our excursion, I called the number listed on the site and left a message. When no one called back, I phoned  later in the day. This time a lifeguard answered, said he couldn’t reserve one for me and I should call back the following morning. I called again the next day and again no one answered. I left a message saying we were on our way there (a 40 minute drive) and hopefully we would be able to borrow the chair.

We arrived there without knowing who to contact. While I waited in the car, my husband walked to a few administrative buildings before finding someone to help us. After a few more missteps, we got a larger-than-life beach wheelchair, which was one of four in a storage container, under lock and key.

I was able to sit in it fairly easily and my husband placed my portable fold-up walker on the rack below. Then he had to push me through the parking lot and paved trails to the boardwalk where we reached the sand - and about a 10-inch drop off. I was nervous about being tilted back in the chair and wary about going off the edge. My husband began kicking sand toward the edge of the threshold, trying to level the terrain. A woman out for a walk asked if she could help. No thanks, we said.

She continued her walk then came back to tell us there was a blue mat a bit further down the beach to facilitate the transition from wood to sand.

And voilà, there was. (It would have been nice if the lifeguards mentioned that when we checked out the chair.)

My husband pushed me down the trail to where the mat was and maneuvered me in the sand toward the shore. We took in the view and the sounds of the waves and had a relaxing, miniature hand-held picnic, my husband sitting on one of the enormous plastic wheels.




Notice the blue mat behind me





Before our trip back home, I needed to use an accessible restroom. My supersized wheelchair  would not fit in the door.

Fortunately, my husband was able to grab my lightweight portable walker stored beneath the wheelchair and I was able to use that to get into the bathroom. Beachgoers who only use wheelchairs would need to be pushed to their parking space, swap the beach wheelchair for their personal wheelchair, travel back to the restroom and use the facilities, then repeat the process in reverse to get back in the beach wheelchair. (Which begs the question: what do you do with the giant beach device while you are using your wheelchair? Leave it unattended in the parking lot?)

Once we knew the basics of how to reserve a beach wheelchair and where to go on SanBuenaventura Beach, we were prepared for a return trip with our out-of-town guests. Again there was no answer when I tried to call ahead. This time we knew where to go for help and parked near where the blue mat was. Getting my chair and getting to the sand via the mat, was easier.

But our guests arrived before we did and asked a lifeguard where the blue mat was. His response: “We don’t do that anymore.”

Here is what I learned from dipping my toe into the world of accessible beach wheelchairs.

Who knew there are many beach wheelchairs available to borrow?

Certainly not me. When I became disabled nearly 16 years ago, nobody gave me a guidebook about how to live my new mobility-impaired life. It would have been nice to read though and see a mention of the availability of beach wheelchairs, instead of finding it out now. My research on the San Buenaventura State Beach website led to other helpful places where I learned they are available to borrow at many, many beaches. The California Coastal Commission lists 90 beaches in 15 counties where you can reserve a chair — a few have electric as well as manual. Los Angeles County publishes a Beach Wheelchair Information Sheet that shows 28 chairs are available at 16 beaches. While many of the state beaches require a reservation, none of the ones in LA County do. You must show an ID to borrow one and comply with any time limits imposed by the beach. Many of the wheelchairs are checked out and returned to a lifeguard, which the guides say may not be available due to other duties.

Using a beach wheelchair is not for introverts

You will attract a lot of attention. The wheelchair makes a lot of noise while it traverses parking lots or walkways. The oversized chair makes an over-the-top statement for its user: Yes, I’m disabled and I’m willing to use this somewhat wacky contraption so I can get on the sand! I’ve used a beach wheelchair twice for a total of about three hours and I got many smiles and stares and several questions. My husband was amused when a man asked him if he built it for me. My favorites were three state beach employees who I encountered near the accessible restroom. They acted amused and asked, “Where did you get that?” Here, we replied. They had no idea such a thing was available. One of them asked to take a picture of me in the chair. I said yes.

You will need an able-bodied, patient helper to help you manage the chair

It’s not easy to push a large awkward beach wheelchair. Or to make turns. Or to calm a newbie who might be apprehensive about being tilted back to get over bumps in the path. And your helper will have to do the running around, finding the right person to talk to and guard the beach wheelchair while you are in the restroom. I was able to sit in the chair fairly easily, with my hubby folding up my portable walker and storing it. But I can imagine it would not be easy to transfer to beach wheelchair from a regular wheelchair — the huge plastic wheels would get in the way. My friend who uses a wheelchair said she sat in a chair like the one I used at her daughter’s beach wedding in Hawaii 10 years ago. She doesn’t remember having trouble getting in it but she says she was stronger back then. Cory Lee, an experienced disability travel expert, offers this video to explain how he is lifted into the beach chair from his wheelchair in Florida. Not many wheelchair users have the help or equipment to accomplish this.

Do your homework before heading to a beach that offers wheelchairs

Some of the beach websites I’ve found give details like how many chairs are available, where the disabled parking is and whether the beach has mats to help get to the sand. Others just give a number to call. I would recommend that you give it a try like I did before arranging a beach outing, particularly one that involves other people. Because we figured out some of the kinks, my second visit went much better than the first. I wouldn’t want a mobility-challenged person to show up for an important gathering, only to find the chair won’t fit into the restroom or to learn they were the last of the first-come first-served wheelchair borrowers. And remember, not too many people know about the existence of the beach chairs. The local Ventura newspaper ran an article in May about the installation of a new mat at Harbor Cove Beach to allow people using chairs. The local Ventura newspaper ran an article in May about the installation of a new mat at Harbor Cove Beach to allow people using wheelchairs or pushing strollers an easier path to the water. The story says the mat will be pulled up in late fall and rolled out again in the spring. It calls the mat “the only one of its kind at a Ventura beach”.

Ummm. That is not correct. The mat where I used my beach wheelchair was at a Ventura beach 3 miles away.

So if you use a beach wheelchair and a mat to ease your path to the sand, or you see someone who does, spread the word. Not enough disabled beach-lovers know about them. And while finding and reserving a chair is a not always a smooth process, think of the payoff: A day at the beach.



Worth all the effort

My Blog is 10 Years Old. What it’s Meant, How it’s Going and How I’m Doing

My brother recently sent me a picture of my dad and me, taken in 2011. I am wearing a necklace given by a friend as a semi-gag gift. It’s a little pink computer on a chain, in celebration of the publication of my blog.

I’m not good with dates, and I couldn’t tell you if asked when I started this blog, but I knew I only wore that necklace on one trip and the picture was taken in 2011.

And that is when I realized my blog is 10 years old.

Wow.

My dad Frank Diamond and me in 2011

   

When I was going through torturous years fighting my rare non-Hodgkins lymphoma, friends suggested I write about my experiences.  Good idea, I said. But first I have to be able to sit up at the computer without being in horrible pain. I deflected all suggestions about writing while lying in bed or using a dictation program to compose. My three decades in journalism taught me to create while I type sitting up and I simply couldn’t break the habit.

So I took an online class on how to start a blog. Ha! my-tech-friendly kids said. You do not have to take a class to publish a blog. Well, I did. 

Our instructor made us sign up for Facebook and Twitter,  which I had been reluctant to do. She helped us customize our websites and focus on our missions. We had several writing assignments a week and we improved though feedback. So when we were ready to publish, we had several posts ready to share.

After six years of living my new disabled life, I had plenty of material. I had spent nearly five months straight in a hospital bed, finished a 15-month regimen of intense chemotherapy (enough, my doctor said, to kill an elephant), faced temporary paralysis and the inability to speak. I had lived with excruciating pain due to multiple compression fractures and dealt with steroid-caused osteoporosis and cataracts. I was released from the hospital and began intense home physical therapy to regain my ability to walk. Then the cancer came back a year later. In this round, I faced a terrifying bone marrow transplant, total body irradiation and chemotherapy that was seven times stronger than what I endured before. 

I began another slow journey of recovery.

I had enough experiences and opinions to fill a book.

Instead, I wrote my blog. Fifty-six posts in the last decade: 23 the first year, 14 the next and two or three in the subsequent years. In 2019 and 2020, I only published one. Last year, although I had two topics in my head for months, I didn’t write one. I was spurred on to compose recently after realizing theviewfromthehandicappedspace had turned 10 years old.

My excuse for not publishing more? I’ve been living my life.

Going to an exercise class twice a week, reading books, going to movies, celebrating happy occasions, mourning bad news. Meeting up with friends and family. Hugging and virtual hugging a lot. Attending book club meetings, going out to breakfasts, lunches and dinners and occasionally brunches or happy hours. Going on vacations, attending plays and concerts. Taking every opportunity to toast at every occasion, sometimes multiple times at a sitting. I am mindful of celebrating that I am still here with others whom I love.

I’ve also been busy seeing endless doctors, dentists, oral surgeons, physical therapists, acupuncturists and specialists I had never heard of. Test after test and appointment after appointment. 

After a decade, I’ve reached a point in my life where I think I am physically as good as I’m going to get. There has been a change for the worse in my ability to walk and balance. The neuropathy in my legs has intensified and I am weaker and more imbalanced than I have been in years.

While doctors order tests to find out if there is a medical reason for this and I attend regular physical therapy appointments, I am getting by doing all the things I used to do, but with rides and assistance from dear family and friends.

But I still plan on sharing through my blog. I know it has helped a lot of people already. 

In 2011, I chose the title for my blog and I wrote its purpose: For people who find themselves in lives they hadn't anticipated: seriously ill, disabled or caring for someone who is. I wrote a paragraph about the blog and I wrote a backstory, giving a short summary of how cancer had upended (and almost ended) my life. I wrote about everything I experienced. I criticized the layout of disabled bathrooms, lamented the poor choices of walkers and raged at rude able-bodied folks who park illegally in disabled parking spaces or rush by me to occupy the only handicapped stall in a public restroom. I talked about staying in one of the worst nursing homes and putting up with nutty (and possibly dangerous) hospital roommates. I lashed out at a concert ticketing system that is not friendly to disabled people.

I also celebrated the good things I have found over the years: the kindness of strangers, the establishments that have gone out of their way to assure accessibility, the comfort provided by my stuffed bunny and the joy of graduating to a real bed after more than a d0zen years in a hospital bed in my family room. I basked in the support of my family and friends, particularly at an amazing surprise fifth stem cell  transplant birthday party.

My most popular post by far was the one about disabled parking. I heard from lots of people in many states and a few other countries struggling to understand the rules. Some wanted to fight a parking ticket when they forgot to put up the disabled placard in a car, some wanted to know if their placard would be recognized in other states or countries (generally, it is), others sought to understand the requirements where they lived. And some wanted to rant against the lowlifes who park in the disabled spots with fake or improperly used placards.

While I don’t preach about my experiences with cancer or my blog, I am quick to offer support when I hear of someone with a new diagnosis or preparing for a bone marrow transplant.  I’ll email my go-to blog posts: one about hearing the initial news and the other a summary of important things I learned. I offer any other help they need. 

Dreading chemotherapy-induced hair loss? I’ll send the post I wrote about the hairy truth.

Facing a bone marrow transplant? I’ll send my post about that and will counsel  you by phone, as some have requested.

Many people have expressed gratitude for this advice. And two bone marrow transplant recipients have personally thanked me (via phone calls) for helping them through the process. One person had his wife call me from his hospital bedside to ask the name of the drug I had recommended to ask for if the nausea got too bad. (It was intravenous Ativan.)

All is not easy in my life these days. I have a compromised immune system so keeping safe through COVID-19 is vital to me. Also, my recent spills have been particularly troubling. I had three serious falls within a five-month period in 2021. (I’ve had more than a dozen since getting sick, but these were extra concerning due to their frequency.) Two required visits to urgent care to make sure I hadn’t  damaged my bones or brain when I slammed my head against a door one time and the asphalt the last.  I did not, meaning my Prolia is helping with my osteoporosis and my head is pretty hard.

I believe I’ve accomplished what I intended when I first started the blog: to make folks more aware of what living in a disabled world is really like and providing a glimpse into the inequities I and others face on a regular basis. I am ever grateful that I survived and beyond touched by the support of my family and friends. I am thrilled when I hear from friends whose eyes have been opened to the needs of the disabled: someone who teaches her children it’s not OK to use the handicapped stall, another who tells me how I would love a particular place because it is very accessible, and one who visited a restaurant ahead of time before we went to lunch there to investigate the layout and the ladies room. Another friend, when deciding on an office for her psychology practice in an historic building, made sure there was an accessible room for disabled patients to use. She was asked did she have any disabled clients? No, she replied, but I might. And others who rented offices in the same building might. The same friend made her remodeled bathroom accessible for when I come to visit.  Still another added a grab bar in the shower for when I am a guest. Others bought a portable ramp I can use when stepping into their home.

After I found myself in tears hearing the Tom Petty song “I Won’t Back Down” the first time I slowly navigated a Relay for Life survivors’ lap, I adopted it as my theme song for life. “You can stand me up at the gates of hell”- I might be leaning against a wall and desperately clinging to my walker - “but I won’t back down.”

My New Year’s resolution? To keep living my life and writing a blog post or two.

Happy 2022.

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.