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.