Twenty Years - My Long Strange Trip Battling Cancer - Spoiler Alert: It has a Good Ending

Three weeks ago, I marked the 20th anniversary of my cancer diagnosis.

I remember July 14th, 2005 well. 

A weak, fatigued 48-year-old, I was severely anemic and had lost a lot of weight. I had a months-long never-ending fever of more than 102 degrees and had suffered drenching night sweats. I had endured scan after scan, numerous blood tests, a colonoscopy and a bone marrow biopsy to find the cause of my deteriorating health - to no avail. My primary care doctor had referred me to the top infectious disease physician in the LA area - Jeffrey Galpin - who took what must have been gallons of blood from me to find the cause of my deteriorating health. My friend Mary had flown from Northern California to accompany me to that important follow-up appointment. My husband, Matt, could not join me that day. Because I thought I might get a troubling diagnosis, I wanted someone with me.

But Galpin had no answers. He referred me to hematologist/oncologist Dennis Casciato (RIP) a noted expert on cancer. He literally wrote the book on oncology care for medical school students and physicians. 

Casciato’s notes from that day described me as “beyond pale” when I came into his examining room. I was alone. For the appointment with Casciato, my husband was out of the country, due to return later that day. 

The doctor looked at all my records - and I had plenty of them - and the notes from my infectious disease doc. He told me he was 99 percent sure I had stage 4 lymphoma. I began to cry. He took my hands in his and said my type of cancer was very treatable and possibly curable. He told me not to look up lymphoma on the internet because there are dozens of types of the disease and I might not have the one that I find.

I promised I would not do that. I didn’t have the strength to sit up and get on the computer, so it was pretty easy to comply.

My husband was in mid-flight at the time. I called my friend, Mary, in tears on the way home, telling her she had come to the wrong appointment.

When Matt returned later that day, I filled him in on the devastating details. Next up would be another bone marrow biopsy which we hoped would yield answers. Doctors said they need to find lymphoma cells to know specifically how to treat the cancer.

That answer wouldn’t come for another nine months. 

And in that timespan, I had been treated at three different hospitals, been in several levels of intensive care units, had my enlarged spleen removed in hopes of finding cancer cells. My team of doctors sent it to another top hospital in LA and to a spleen whisperer physician in the Midwest. 

I had a few transfusions, a number of spinal taps, another bone marrow biopsy and a procedure called plasmapheresis - in which they drained my blood, froze it and then returned it to my body.

None of these yielded any cancer cells or any improvement in my health. During that time, I was on such a high dose of prednisone that one veteran doctor said he had never seen such a case. And that was just my daily regimen. I had a nurse come to my home once a month to give me a mega-mega prednisone infusion. The docs agreed it was necessary to keep me alive.  Unfortunately, it also caused osteoporosis - my once strong bones became brittle. And each time I fell, I suffered compression fractures in my back. (I also have prednisone to credit for cataracts in both eyes.)

My team of doctors watched me become sicker and sicker while they debated whether to perform a brain biopsy. The argument for it - hopefully it would reveal cancer cells. Against -  it was very invasive and could cause brain damage or the incision might not be in the correct part of the brain to provide answers.

Meanwhile, my illness left me paraplegic for a spell, unable to speak for awhile and essentially blind in one eye.

One of my doctors was in touch with Memorial Sloan Kettering Cancer in New York to see if they could shed light in my case. One said I might have a new type of cancer, another said it might be an unknown ailment AKA Laura’s Disease. My oncologist said he would wake up at night and go to his computer to try to figure out my case.

Finally, they decided to proceed with a brain biopsy, which revealed the elusive cancer cells - large cell B non-Hodgkin lymphoma. It was a rare strain which required more than a year of in-patient chemotherapy - enough to kill an elephant, one of my doctors said. I began physical therapy in the hospital which brought me to tears each day: it was humbling and humiliating.

After four-and-a-half months, split among two hospitals and three rehab places, I was cleared to come home. For nearly a year, I went back to the hospital one week a month for my super-toxic chemo and stayed until it had been flushed from my body.

During this time I had an in-home visiting physical therapist, who helped me get out of a wheelchair and learn to walk using a walker.

A year later, my cancer returned throughout my body. I needed a bone marrow transplant which involved more chemotherapy - more than seven times the amount I had the first time. This time I did check the internet to see what my recovery chances were if my type of cancer returned. There was no data at the time because few people had survived my type the first time around. 

Pre-transplant with red marker on my arm. I couldn’t take a shower for days so the ink wouldn’t wear off.

The transplant process was grueling, involving a month-long hospital stay and my first radiation therapy: TBI for total body irradiation for four days. I remember crying during a prep for the radiation a few days before I was admitted -  the only time I consciously thought poor me. How the hell did I get here? Bald, essentially naked, fighting for my life lying on a cold capsule while the tech chatted about Pink Martini whose music was playing at the time. He drew lines with a red marker around my heart and lungs so those organs would be protected from radiation then took instant photos of me and my red marks. I had a fleeting thought that maybe he was a pervert who secretly kept a collection of red-circled breast pics for fun. I mean how tough is it to figure out where a patient’s heart and lungs are?

I was spared hair loss with my first round of chemo, but this new toxic cocktail caused most of my hair to fall within two weeks. I met with a doctor that Pink Martini day who said this hospital chemo would cause ALL the rest of my hair to fall out. It did. I was left with one eyebrow hair on one side and two hairs on the other. Oh and eight of my 10 toenails fell off.

Days before the transplant, I was hooked up to a miracle machine that harvested healthy baby blood cell

    

For my radiation appointments the following week, I was given medication to make them bearable.

In the transplant process, patients are brought close to death, Then baby blood cells are infused, either collected from the patient or a donor. In my case, I was able to donate my own, then they were frozen. On the morning of the transplant, the thawed cells were infused, then they were supposed to engraft and grow into healthy blood cells. Mine did, to a point. My blood numbers still aren’t where they are supposed to be, but they are close enough.

A journalist for nearly 30 years, I was encouraged by family and friends to write what I had experienced. I had plenty of material, but first need to heal and be able to sit up at the computer and write. (I rejected suggestions that I speak my words or type lying down. Neither of those worked for me). Three years later, I took an online class - one or two of my kids rolled their eyes at that one - on how to create a blog.

 On June 13, 2011, View From The Handicapped Space was born.

It came with a backstory and a target audience: “For people who find themselves in lives they hadn’t anticipated: seriously ill, disabled or caring for someone who is.”

My introduction:  “I’m in the middle of the age range of baby boomers. But I am way ahead of the rest of the pack when it comes to what we might face as we get older. Fellow boomers might not want to think about life-threatening illness, Depends, walkers, or handicapped parking. Neither did I. But I’ve been though it all and came through it OK. I am alive. And I am disabled. And I am full of opinions and observations that will help others prepare for and adjust to the world ahead of them.”

I am ever grateful for the invaluable love and support showed by Matt, my kids and other family and friends, for the medical team that literally saved my life, for anyone who donated to the cancer-related non-profits who funded research yielding protocols that contributed to my success. 

My life hasn’t been and isn’t easy. Since my diagnosis, I’ve fallen 21 times. I’m in constant pain. I take nearly 30 pills a day. I have seen and continue to see lots of physicians and undergo scans and tests.  I’ve lost 2 1/2 inches of height due to my steroid-caused osteoporosis. I quit driving when I couldn’t distinguish the gas pedal from the brake - due to neuropathy in both legs. I remain anemic and immunocompromised. My oncologist explains it this way: my blood cells aren’t doing what they are supposed to be doing. But they are doing enough to keep me alive. 

I’ll take it.

I’m an active 20-year survivor who has been cancer-free (since my transplant) for nearly 17 years. I’ve been able to enjoy two decades of precious time with people I love. I am physically limited in what I can do, but it’s a small price to pay. I tell people I can’t climb mountains, but could never do that when I was able-bodied. Now I have an excuse.

Me during the transplant. The sucker is to avoid the horrible taste that occurs when the baby cells enter your body

Several years ago, I spoke at a UCLA celebration of bone marrow transplant survivors. The school was celebrating its 50th year of its transplant program and I was marking my 10th year as a transplant survivor.  Many survivors, family and friend and medical professionals attended. A few current patients had been wheeled to the second floor with their IV poles to view the program in the courtyard. I told my story about when I first checked into my room on the transplant floor in 2008, a young woman stopped by. She was a bone marrow transplant survivor, and was returning a book to the unit and she asked if there were any new patients to the floor. She came to me to spark hope during desperate days. She said she had made it through just fine, despite many setbacks. I remember her beautiful long hair. “And this is my own hair!” she said. 

The encounter was memorable. 

And my transplant was a success - with zero setbacks. I told the patients I hope my story would encourage them.

I closed my short speech with my favorite summary of my life these past 20 years.

I’ve been to hell and back and hell and back with emphasis on the back.

Cheers to life

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.

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