Just call me "Share a Smile, Becky"

In 1997, Mattel released a Barbie in a wheelchair called Share a Smile, Becky. This was seven years after the passage of the Americans with Disability Act (ADA). A girl with cerebral palsy wrote Mattel when she realized that the Share a Smile Becky would not fit in Barbi’s Dreamhouse elevator. Instead of redesigning the Dreamhouse, Mattel discontinued the doll.

I share this because I had a Share a Smile Becky experience last week.

For the holidays, I wanted to share fun holiday experiences with close friends. With one I went to a Board and Brush event and made this Victorian Christmas tray. And for another, I bought tickets to a holiday event at the Bonnet House. This historical home in Fort Lauderdale was built around 1900. The man who built it was a rich artist eccentric in the early 20th century. This house was decorated fabulously for the holidays and every night of the week featured wonderful performances and decorations and liquor for an evening. I chose to buy tickets for a wonderful evening of jazz and champagne, plus a walking tour of the home.

Knowing I would be on my feet walking for hours, I knew I would need my wheelchair that evening. I contacted the event organizer and asked if the home was wheelchair accessible. She told me that it was, but that the parking lot was not. I made arrangements for a tram to pick me up in the parking lot. So it was all set and it was a surprise treat for my friend.

We get to the event and indeed the tram was fine; although it felt like I was on Mr. Toad's Wild Ride from Disney World. After loading my wheelchair, we were seated in the back of a deluxe golf cart, and the driver went so fast that my glasses actually flew off my face! I painfully felt every pothole and dip in the one and a half mile trek to the home. The ride back to my car was much better.

Life has a way to humble you; and I had to draw on my sense of humor to enjoy the evening because  I had purchased tickets to the wrong night.  I thought I bought an evening of jazz and champagne. But it was actually an evening with an Elvis impersonator and Old Fashioneds. Wow, what a difference; luckily my friend knew lots of Elvis songs and was having a fun time with it.

So I get to the first room to walk through and I realize it is not wheelchair accessible. I'm a little annoyed that I can't see this room but I move on. My friend was able to enjoy all the rooms. I could not wheel into room one, room two, room three. This historic home was not wheelchair accessible! 

I made a video in front the fourth room that I could not enter. 

All the rooms have a large concrete step and a wooden beam to maneuver to enter and exit. Just then, a staff person overhears me while I am recording and comes to me saying 'oh don't worry I will call maintenance and get the ramp'. After a very loud metal ramp is laid down and a lot of people are not able to enter the room and creating a bottleneck around me, she smiles and tells me now I can enter. But the ramp does not clear the entrance and I am still not able to get in.

At that point, she says they will carry me into the room, bring my wheelchair and carry me out. No way am I up for being a further spectacle. I said "no thank you, I do not want to be carried" She kept insisting and badgering me and now there's a large circle of other attendees trying to get into the room and wondering what the holdup is. I felt very exposed and vulnerable and at one point I have to just say "please leave me alone! I do not want to be carried. I will just make do."

What I was able to maneuver was the courtyard surrounding the entrances to the rooms. They were decorated with wonderfully crafted wreaths and garland donated by design firms in the community as well as artists. Luckily, there was one room that did not have a stair, nor a beam and I was able to go into it. Yay! It was the artist's studio! Exactly the room I wanted to see most. As a painter, I love seeing how others work in their studios and this was no disappointment. 100+ years later and I'm looking at the artist's palettes, drawings and paintings. The docents were full of wonderful anecdotes. 

By then I was on my second old-fashioned and being a cheap drunk, I was feeling good. My friend roamed the house and I was parked, talking to the staff, and having a good time now. I made it work. But I left with a feeling of being left out, especially when I was assured the home was wheelchair accessible. 27 years after Share a Smile Becky and I am also not able to visit this dream house.

I do not think the event organizer meant to lie to me. But it is absolutely not OK that I was expected to call maintenance for every room and have that person bring a metal ramp. And the worst error was that the ramp was not even put in place beforehand to see if it cleared the doorway. It did not.

If someone has to call for help to enter a room, then it is not accessible. Accessible would mean every room would have a ramp, installed permanently, that allowed a wheelchair to easily enter and leave.

I plan on writing the organizer and sharing my bad experience as well as what I enjoyed about the evening. I do not want my money back. I know how hard it is for nonprofits and I want these old historic homes to thrive with attendance. Just do better.

Presenté!

 

I am happy to announce that my "We Won't Go Back" small painting is now permanently displayed in a Miami Planned Parenthood reception area. I specifically asked that it reside in a center that has a large Latina population. It is hanging in the Golden Glades Health Center.

Seeing how small it is on those large empty walls, I wish I had done a much larger piece.

Planned Parenthood is one of the nation’s leading providers of affordable health care, and the nation’s largest provider of sex education. With or without insurance, you can always get services from them. 

Despite Trump's win, we can take pride knowing that millions of people turned out in support of abortion access. Now, more than ever, we need to keep our grassroots efforts strong. We need to support our organizations that represent our interests in their services, outreach and education. Please, consider donating to Planned Parenthood so that they can continue their work in ensuring reproductive freedom and justice.

Despite Trump's winThis loss doesn’t change the fact that millions of This loss doesn’t change the fact that millions of Americans turned out to support abortion access and reproductive rights champions.Americans turned out to support abortion access and reproductive rights champions. 

We know we are the majority, and we aren’t going anywhere.

This loss doesn’t change the fact that millions of Americans turned out to support abortion access and reproductive rights champions. 

We know we are the majority, and we aren’t going anywhere.

Throat chakra healing

This beautiful painting is by the artist, Rakia. She titled it "Open and Flow" and it refers to the throat chakra. That chakra is located in the center of the neck. In Eastern traditions, the throat chakra is associated with expression, creativity and speaking one's  truth. 

I am going through tremendous healing in my throat chakra right now. I have had healing spurts at different times in my life relating to opening up my throat chakra.

As a child, I used to have a recurring nightmare in which I was choking and could not breathe. It was not until my 20s that I finally dreamt about unblocking what was in my throat. In that dream, it started off as the usual nightmare in which I'm choking and clutching at my throat. When, to my horror, I started coughing up and vomiting all sorts of things like black spiders, crabs and slippery eels. It was disgusting. And then the dream ended abruptly. I easily interpreted it to be about me speaking my truth as a young lesbian and my activism. Little did I know that this cleaning out of my throat chakra blockages would take many years, decades even. But that was a good start. I've had other growth spurts, but none other so dramatic as the one I had this year with my cervical spinal decompression surgery.

This unflattering picture (what I do for a blog posts!) shows the trauma I've been enduring around my throat chakra. It culminated in the last several months. My cervical vertebrae were so damaged that they had compressed my spinal cord to the point of spinal damage. I had to have an urgent surgery in which they completely removed my C4 and replaced it with titanium, and then also had two cervical fusions.The surgeon went through the front of my throat to reach my vertebrae. The scar lies directly over my throat chakra! Poor baby.

Now, I am not saying that my spinal compression in my neck is due solely to not being able to express myself, but I do believe chronic trauma to energy centers in our body can contribute to illness in those areas. I believe my throat chakra has been blocked due to years of verbal abuse, constant criticism and silencing. I do not tolerate any of that in my life anymore.

I am using daily visualizations to gently wash away psychic debris throughout my whole body, but especially in my throat and neck area. And I am taking concrete steps to speak my truths and express myself.

Some of the healing involves speaking my truth when it's uncomfortable. This morning I broke through my fear of rejection to let a couple people I love dearly know how they had hurt me this past week. I was very afraid of their potential reactions but I felt I needed to say something. It was an overall positive step in my relationship with them. I hope they feel similarly. And while some parts of it were hard, I feel good about how it was left. 

I don't expect I'll ever reach a day when I have nothing to work on in myself. But it's such a good feeling to continue to grow and evolve in ways that leave me and my community more at peace.

 

Squiggly lines

 

I have not painted in months. The last thing I painted was a simple design. As you can see from this photo, my hands were not able to hold the brush with any authority and I was not able to make smooth lines or circles. When I saw this, I was so devastated for my lack of physical abilities. I put away my brush for several months.

My sister, M, and my friend S, gave me great advice: Accept where I am right now with my abilities and make that part of my creative expression. Create a new style of art that incorporates my squiggly lines.  It was affirming and brilliant, but I find it hard to get on board with it. Sigh.

Fast-forward several months and I am one and a half months post cervical spinal surgery. While I am dealing with a possible surgical complication, I have great improvement in my hand, dexterity and grip with my right hand. My left hand is still suffering with burning neuropathy and numbness, but since I am right handed, I am happy to report that the decrease in symptoms has allowed me to pick up a brush again.

I wanted to start with something not too challenging so I decided to design my own pumpkin for Halloween. I chose to create floating circles and on another one, floating shapes. My hands are still not totally normal in their dexterity, but I was able to draw pretty good circles with my right hand! I am thrilled.

I still have neuropathy, especially harsh in my left hand, and I do not know if that will ever go away. So my lines still are not as smooth as before. But I will work on accepting my art as a reflection of me as I am. My evolving artistic style may still incorporate squiggly lines . 

What is your version of squiggly lines?  Here's to everyone that has to accept less than perfect things about themselves.

Secret admirers and allies

I had a lovely surprise last night. My housemate, DL, answered an evening door knock, thinking it was a trick-or-treater. A nervous young woman handed him a note and said she was going to leave it on our car window, but decided to hand it to us in person. She wanted to thank us for our yard sign and flag, which were both supporting womens and abortion rights and Yes on 4 (a Florida prop on the ballot that would repeal the abortion ban throughout all of Florida).

I usually have one of 3 yard flags in front of my house (a free Palestine flag, an overall progressive flag, and an women's/abortion rights flag) For election time I have focused on women's rights and reproductive justice so I have my pink flag and a yes on four  yard sign.

Apparently, abortion rights is dear to her heart. I wonder if she feels the same way around free Palestine and other progressive issues. 

I plan to drop off a fun note and try to establish a neighborhood friend. It was fun to get a shout out from a neighbor. Presenté! 

To the Black and Latino men in my life

If you know me, you know that I am politically engaged with a  progressive agenda (check out the young me from my college days, lol). No doubt you have heard me extol the dangers of another Trump presidency. I know you may be disgusted with politics and think both sides are lying and full of shit, but I am making a special appeal to you to listen to me now. If you love me as a woman, as Latina, as someone who has always worked to make this country a more fair democracy, please hear me out.

Trump is counting on his machismo to appeal to men of color. He is trying to split black and Latino communities along gender lines. Everyone knows the best predictor of future behavior is past behavior. His abysmal history of harming communities of color, his project 2025 or his position on reproductive freedom that would be dangerous for your daughters, your sisters and all women you love are all just the tip of a repressive iceberg.

His macho posturing and reputation for "getting things done" (however illegal or morally reprehensible), is appealing to many black and brown men. And sadly, plain old sexism within black and brown communities is causing some men to vote for Trump simply because he is a male. 

I want to make a special appeal to friends of mine who are disillusioned with politics and tell me they do not plan to vote. To you, I want to clarify one thing. Casting a vote for one candidate is not sending them a valentine. It is not a love note to that candidate nor does it represent your total support of their platform. Voting for a candidate is simply a strategic chess move to reduce the harms to our communities of color, as well as our country.

Please, vote for Kamala Harris. She is not good on everything but she does represent a better agenda for all  Americans. Show your support for the first woman of color running for president on a democratic platform. 

I am signing off today by declaring "I am Puerto Rico".

Breaking up with your doctor: my dear John letter

My previous two posts detail a harrowing medical emergency. I mentioned how previous doctors dismissed my symptoms and if it had not been for my own personal tenacity, I would've ended up paralyzed or worse.

This is not the first time that I have experienced such medical dismissiveness. I realize that this medical gaslighting did not start happening until I became an older woman. See this past post. (And yes, I do acknowledge that I seem to often have medical emergencies. What can I say? I live with an auto immune illness that wreaks havoc on my body).

I remember when my mother had lung cancer and she kept getting misdiagnosed as having allergies or suffering the effects of a chest impact from a mild car accident. I kept taking her to emergency rooms and physicians for chest pain. Once when we were leaving an ER without any medication or referral, my mother turned to me and said "they just see me as an old immigrant woman; that is why they don't take me serious". She was right; and by the time they made the cancer diagnosis, it was beyond hope and she had suffered tremendous pain needlessly for nine months. Learning from this, I guess doctors just see me as an older, brown, overweight woman. All categories that get dismissed in our society.

Like most women, I have found it difficult to stand up to "professionals"- people in professions that our culture tell us are experts. We were taught that respect=smiling acceptance. We were taught not to rock the boat. This definitely applies to physicians. But this latest episode of medical dismissiveness nearly cost me my life, so I am definitely going to speak out.

I have been pondering what action I would take regarding the first neurologist I saw. His final diagnosis was that I simply had neuropathy in my upper and lower extremities and all my other concerns could be explained as the result of having RA. Never mind that my rheumatologist had been the one to say my lack of balance was not RA related and he referred me to this neurologist. I remember that I brought a friend to that appointment and even he was shocked at how casual this neurologist was in my appointment. It was even in his posture: the doctor sat slouched, one leg extended and one hand propped up his head. It seemed as if he was tired and maybe even bored with our discussion.

So I have decided that I will write that doctor and tell him about my recent emergency hospitalization and surgery. I want him to hear that 11 days after he dismissed me I ended up almost paralyzed. I am posting here the letter I am sending him.  I do this for two reasons. The first is purely personal. Speaking up and telling a doctor that he was wrong is hard for me so I am doing so publicly as an act of empowerment. Secondly, I hope this inspires someone who may be experiencing the same to speak up for themselves.

Dear Dr X,

I first came to you on June 26, 2024 for balance impairment and possible carpal tunnel consult. You ordered upper and lower extremity testing and consults with a hand specialist and a brain neurologist specialist. I came back to go over the results, July 25, 2024 but it turned out the MRI done on my brain was not inclusive of the one you needed so you ordered another brain MRI and I did not come back for all my results until August 15, 2024.

I remember telling you how my hands were not functional. My fingers were numb and I had burning in my thumb and second finger. I felt crushing pain and rigidity up my forearms. My walking was very problematic and and I was falling fairly regularly. I had to use a walker. Your conclusion was that I had carpal tunnel causing my hand problems and the effects of rheumatoid arthritis was causing the rest. You did mention that perhaps I might consider getting spinal MRIs in the fall/ winter. 

I was stunned by your conclusion as I knew something was terribly wrong with me, and it was not just from my RA, which I had been living with for years and felt I knew well the symptoms. Also, my rheumatologist had referred me to you in the first place because he said my loss of balance was not related to my RA. I did not feel carpal tunnel explained the muscle crushing pain and rigidity up my arm. When I asked you why I was falling, you replied "maybe you have an inner ear infection; perhaps you'll want to consult an ENT”.  I was very disappointed and felt you were not taking me seriously.

I want to tell you what has happened to me since our last visit in the hope that it will lead you to reevaluate what I feel were dismissals of my symptoms and concerns.

I left your office dejected. I felt I was on a runaway train that was going to crash and nobody was helping me. My physical decline was happening so quickly that I feared what my condition would be by January 2025. I sought a second neurological opinion.

August 26, 2024, 11 days after my final consultation with you, I had a consultation with another neurologist. Upon an extensive physical examination, she summarized in her notes ”On neurological exam, patient has impaired proprioception and vibration on bilateral feet and hands, positive romberg and Lhermitte sign positive. Given the symptoms, gait abnormality could be multifactorial due to sensory neuropathy and spinal spondylosis due to RA. Will obtain MRI cervical and thoracic to rule out any structural/demyelinating causes.”

I had my cervical and lumbar MRIs on September 16, 2024 and my thoracic MRI on September 17, 2024. On September 18, 2024, I received a message from the ordering neurologist “Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery.” 

This ER visit on September 18, 2024 resulted in emergency hospitalization and spinal surgery. The neurologists and neurosurgeons all said it was a miracle that I came in that night; that if I had jerked my neck in anyway, I would've been paralyzed. They said my symptoms showed severe myelopathy and questioned why I had not sought help earlier!

I ended up having spinal surgery: ACDF of C3 and C4, corpectomy of C4 and ACDF of C4 and C5. The neurosurgeon says my spinal cord has been harmed, and I am left not knowing if any of my impairments will be reversed.

As I mentioned earlier, I am writing you this letter to highlight what I hope was a rare lapse in

professional judgment. But I can tell you as your patient I left your office feeling you did not take me serious and I  almost felt hopeless. I know you got into medicine to help people. My hopes are that my experience will benefit you in your treatment of future patients.