Recovery notes, 1

This is one of five messy journal pages called Hospital Stays 1 & 2, 2025. I had four major surgeries in 2024 and many hospital stays. Unfortunately, 2025 started with two. I am committed to doing anything possible to avoid any invasive procedures or hospitalizations for the rest of 2025! Let's hope my body cooperates.

At this point, I feel I have significant medical trauma to work through. Medical trauma does not only occur from abusive or inappropriate medical incidences. It also applies to the incredible physical and emotional trauma you go through when you have a major illness and medical intervention for treatment.

While, most of my healthcare providers were wonderful, there were a handful that caused emotional and physical harm. It only takes a few people working 12 hour shifts to impact your hospital experience. But, luckily, these people were few and far between.

An overriding, soul wrenching experience in 2024 was the unbearable PAIN. The pain I was living with on a daily basis had become literally too much to bear. Multiple Percocets a day did not extinguish it, and I was reduced to barely moving at all. I could only be on my feet a couple hours a day and then had to lie flat in pain. I would not wish this on anyone. Along with your loss of daily functioning, you have to deal with unrelenting pain in multiple places in your body. Much of it was nerve pain, which is it's own version of hell.

I don't wanna revisit these terrible times too much in this post. I still live with pain on a daily basis, but it is not as extreme, and I look forward to it disappearing. I am also regaining much of my abilities such as using my dominant hand to write and eat with.  I am also gaining in my ability to be on my feet longer, and I am relearning to walk. I have a year to work on this and I'm hoping for a full recovery. 

I am also going back to some of my rheumatoid arthritis medication. I was off them for five months and boy did I feel it! I am still not cleared for my biologic injections of Enbrel, but I got to start my hydroxychloroquine and sulfasalazine last week. Hopefully the side effects from these medications will pale in comparison to the relief I will get in my many painful joints. I had to be taken off all my RA medication because medication for autoimmune illnesses suppress your immune system and I could not have that while I was undergoing sensitive surgical recoveries.

I feel such gratitude to my spinal neurosurgeons, nurses and anesthesiologists. Dealing with severe spinal compression is so delicate and complex. I am overwhelmed with appreciation for the people that went down this long educational tract to be able to save people like me from paralysis and death. Thank you, thank you, thank you. My neurosurgeons had to go through medical school, then go years for a specialty in neurology, and then had to go years in a specialty of spinal neurosurgery. It is one of the longest physician trainings.

This journal page is messy on purpose. It is chaotic and violent.  "Fall risk "was a label assigned to me in medical settings. This told personnel that I needed their hands on help for everything. I literally had alarms set on my bed and chair, prohibiting the slightest move towards independence. I do understand that this was for my safety. But the hospital definitely aired on the side of caution. As a fall risk, I had to fight with healthcare staff to give  me any privacy. The hospital's fear of liability in case I would fall kept me dependent in ways I did not need. The most private of actions had to be in full view and hands-on with 1 to 3 people. To say that I was impatient and crabby to be left alone is an understatement. The brick walls represent my struggle to breakthrough pain and demoralization to embrace recovery. The fiery colors reference  my pain and blood.

My rehabilitation is difficult.  It is a daily challenge that sees growth in very small increments. And my body is still not 100%. I am chronically anemic, my rheumatoid arthritis is flaring in several joints and my cervical and thoracic regions are still limited in movement and painful. This rehabilitation requires patience, which is a virtue I find lacking. I intuitively know that I must be grateful and hopeful to continue recovering. Cheers to that.

 Here's to a 2025 that is healthier, hospital-free and full of creative projects. Wish me well.

The time is now

 

This is a large self portrait I did a couple years ago. It is pencil on paper.  I am standing in front of a poster for an art exhibit called Retratos, that featured Latino self portraits. I love this self portrait of mine because it shows me laughing with wild abandon. Just really enjoying myself fully and in the moment.

And that is how I am consciously trying to live my life now. One thing that chronic illness has taught me is that you never know when an ability or self sufficiency will be taken away from you. So as long as I remain kicking and making a ruckus in this world; I am living with the intent of "the time is now".

What this means for me is to enjoy and explore what I have as far as physical, mental and emotional gifts. And to not deny myself of many "do-able" things I want. My special form of self sabotage manifests as guilt for wanting pampering and TLC, putting off things I want for an undefinable future. 

Now, I live modestly and I am not talking about giving myself a green light to buy exorbitant or expensive items that are not wise investments. I am talking about relatively small things. For example, not wearing underwear or PJ's until they're quite literally falling apart. It is OK to splurge on new underwear or loungewear to wear around my house! It means going to the nursery with my friend DL to buy nursery plants to put on my porch because I want that beauty around me when I sit outside.  "The time is now" means hanging my art around my home and buying frames for pictures I want to display.  Spending a little on making my home more homey. "The time is now" means letting myself bring things into my life that I have longed for and are totally within my budget. Not postpone or deny myself.

These type of indulgences may seem small and no big deal.   The psychological aspect of denying myself things I want for silly reasons like guilt or " should not's" was deeply in entrenched. I am not sure where this came from; I was given everything I needed and then some growing up in my parents home. I suspect my immature political consciousness contributed to my self denial. Perhaps it is because I never really had a lucrative career; so I was always on a tight budget. And I chose to work with marginalized communities that literally were wanting of the basic necessities.  So I often compared myself to them.

This denial was not just related to tangible objects, but also activities and interests.  It's taken decades for me to realize that I can choose to work towards a beautiful world while also enjoying a beautiful life that fuels my soul.  I am calling in the bounty of the tarot's Empress major arcanum. I am encouraging daily time to make art. I am giving myself a little treats that boost my morale while I'm dealing with a lot of pain in my chronic illness and I'm letting go of any guilt.

Are there things you have denied yourself for self sabotaging reasons? 

Know your rights

This is a print gifted to me by my friend DL. I love it. He gave it to me when we were getting to know each other more deeply and he heard stories of my growing up with immigrant parents. 

The orange one (our new president) is rabidly anti-immigrant, when it comes to immigrants of color. He is fine with the good type of immigrants like his wife.

So we need to protect immigrants of color from the harsher immigration laws that are coming into effect. 

This is taken directly from Flimmigrant om Instagram:

Know Your Rights! Change is coming.

Everyone, regardless of their immigration status, has rights. It’s important to stay informed and empowered! Swipe through these graphics to learn about your rights in different situations.

Need assistance or have questions? Call our FLIC Hotline 📞 at 1-888-600-5762. We’re here to support you. 💛

 If approached by immigration in Fl, know your rights.

Conozca sus derechos! Este 20 de enero llegarán cambios. Hay que estar preparados.

Todos, independientemente de su estatus migratorio, tiene derechos. ¡Es importante mantenerse informado y empoderado! Estos gráficos te ayudan a conocer tus derechos en diferentes situaciones.

¿Necesitas ayuda o tiene preguntas? Llama a nuestra línea de asistencia 📞 al 1-888-600-5762. Estamos aquí para apoyarte. 💛

Conozca sus derechos

Activists I love series, Sonja Wilde de Vries

I have not been able to create much art this past year. Due to neurological damage, my hands were not working. After my cervical surgery, I regained much use of my right (dominant) hand. I feel blessed. At the time of my surgery, I told the my neurosurgeons to first and foremost, 'save my hands'. I was willing to be more impaired with my legs, but I needed my hands so I could make art. And my prayers were answered. So I have been sitting at my art table, doodling and dabbling and generally having fun. I am starting a series called "Activists I Love" that feature portraits of my activist friends as well as other activists that touch me on a personal level

 

I like to tell stories. And I want to shine a light on some of the countless heroes among us that have worked consistently and anonymously for social justice. I want to tell their stories.

My first portrait in this series is of my friend Sonja Wilde de Vries ( 9" X 12" acrylic )

Sonja grew up in Holland and is the daughter of a fierce Dutch activist mother and a progressive US father. She was given to her grandmother (Oma) when she was a baby and she went to live in Holland. Her childhood in Holland was spent living with several different family members. Her Oma has been the biggest influence on her political activism. She recalls many stories her Oma told her about her work with the Dutch resistance to Nazi occupation. She was deeply touched to hear how her grandmother hid people under her floorboards. Several of her family members were sent to concentration camps. This awareness, at an early age, of the need to fight fascism, instilled in her a deep life commitment to work for justice. Sonja is a staunch supporter for a free Palestine and has been involved in that movement since her young years with her mother in Holland.  

Sonja moved to the US in her early teens. Her activism in the US has been grounded in an anti-racist and anti-imperialist framework. She drew on her personal life as a queer woman to form an influential group called "Queers for Cuba". She has been involved with advocacy and support for political prisoners since her early adulthood. 

Sonja suffered traumas in her early life and she acted out by turning to alcohol at a very young age. Today, Sonja is 37 years sober and works with alcoholics to help them in their recoveries. Her recovery from alcohol gave her skills to also recover from past sexual violence. Today, she lives an out, queer, vibrant and unapologetic life; full of creativity, spunk and solidarity.

It is a cruel irony that Sonja is currently facing trumped up felony charges in a small eastern Kentucky town. Sonja is married to a black man who is serving time in their prison. During a visit with him, she was apprehended and falsely charged with carrying contraband. Despite x-rays that show she had nothing on or in her person, they are making an example of her. She is facing one to five years in prison and a felony charge. Besides imprisonment, if she is convicted, she will never be able to visit her husband nor any other prisoner again and she will not to be able to be a teacher (as is her vocation). 

Having been a lifelong activist that's lived in Cuba, been part of countless humanitarian brigades to Palestine, and visited and advocated for many political prisoners, we know US governmental agencies have had her in their sites for many years. Her marriage to a black man no doubt ruffles racist tendencies in that county. We believe these trumped up charges are an attempt to silence and discredit her. In these far right times, this railroading is becoming a sad reality for many activists in our country. Sonja lives modestly and is turning to community for help to pay for her defense. Please consider donating here. No amount is too small.

Today, Sonja lives in the South and while she continues her political work, she spends her free time hiking, baking and writing. She is a mother and grandmother. Her poetry and documentary films beautifully reflect her sensibilities, both personal and political.

You can purchase some of this print in my Etsy shop here

You can view some of her works through these links:

Poetry: 

Planting a Garden in Baghdad and The Hour of Departure

Anthology: The Junkie who Loved Horses

Documentary films:

Gay Cuba

Refuseniks

Out: The Making of a Revolutionary

Spinal surgery #2

I am definitely a frequent flyer for hospital stays.  I listen enviously when I hear friends tell me that they've never broken a bone, ever had a surgery or hospital stay. I've had many of the above. So much so, that during this most recent two week stay, I had several nurses that remembered me from previous hospital stays. It was a friendly reunion that I believe got me better bedside service. Sweet.

My doctors suspect that it was my rheumatoid arthritis that degenerated my spine so severely. As you may recall, on September 24, I had emergency cervical spinal surgery because I had serious cervical spinal compression. I was left almost paralyzed. Three months later, in true Deborah fashion, I entered the ER December 26 and ended up with emergency thoracic spinal surgery! 

At the time of my cervical surgery, my neurosurgeons told me that I would need to deal with my thoracic spinal compression 'next'. The MRI showed spinal compression there as well, but the cervical spinal compression was the most important to repair first. Neurosurgeons work from the top down. When the spine is injured, it is most important to repair the cervical first because it nourishes all the vertebrae below it. Then thoracic and then lumbar last.We thought that we had more time to plan treatment for my thoracic T10, T 11, T 12. 

I have been suffering with back pain and inability to walk properly for sometime now. The cervical corpectomy and ACDF helped a lot but it mainly helped my hands. I was still wearing my prescribed neck brace when I showed up December 26 to the emergency room for my right side numbness. 

I had an appointment January 8, 2025 with Dr S, my neurosurgeon, to go over surgical options for my thoracic spine; but I began losing more basic abilities at an accelerated rate in December, 2024. By December 23, the right side of my body from my mid back down was experiencing occasional numbness that would last for 20 minutes and then be OK. And my right leg would buckle with no notice. I contacted Dr S and his team  and they moved up my appointment to December 27.

I wanted to get through Noche Buena (December 24th) and Christmas at home. I had been in close contact with Dr S's physician assistant (PA) by phone.  He told me not to white knuckle it, trying to make it to my appointment on December 27. With any new symptoms I was to go to ER immediately. He agreed with me that pretty much the ER would just stabilize and keep me in observation until I saw neurosurgeons on the 26th. I planned to go to the ER early the 26th, as my right side numbness was extending into my groin area and was more constant

Upon entering the ER, I was immediately admitted to the hospital. I saw Dr S's PA and spoke with Dr S on the 27th. They were scheduling me for surgery the following day. It was a Saturday, so I was the only operation happening that day. It was weird to be wheeled into an OR so empty as many physicians were on holiday. My anesthesiologist had to serve as surgical assist (instead of the Neurosurgeon Fellow).

Dr S told me that this was a "major, major surgery". The spinal compression was so extensive that instead of a 1 - 2 inch scar; I ended up with a 6 inch incision. I awoke with a wound VAC and two drains. I had a complication, called a dorsal dural bleb. As far as surgical complications go, I think having a "bleb" is so funny as that name conjures up a friendly, colorful, cartoon character. This is what I think a 'bleb' looks like.

Post op recovery was extremely painful, and despite having had numerous major operations, this was the first time I actually hallucinated. I told my nurse about it and she said "oh, that's the Dilaudid you were given post op that mixed with the anesthesia that was still in your system.”

My hallucination was innocuous and kind of funny. To understand it in context, I have to tell you its backstory. 9 hours earlier, my friend , DL, was trying to alleviate my pre-op anxiety and was talking about a cheesecake recipe he wanted to try.  It was called orange cheesecake dump pie. It contains orange cake mix, two packages of cream cheese and piecrust, among other things. I said firmly "No way, anything with 'dump' in the title sounds yucky!" Now, I often shoot down DL's proposed dishes because he has a way more adventurous palate than me. Also, he eats healthier and chooses ingredients that I do not think taste good. This eating difference has been a source of hurt feelings for him and frustration for me.  So he playfully teased me about not being open to new foods. When I was being wheeled into surgery and we had to say goodbye,  I looked at him and said "Hey D, make the dump pie. I'll eat a slice." He looked at me and said "Aw, you do love me" and I gave him a full face smile. We had a moment. Nice memory.

So my first post-op night in the hospital, I was semi conscious in my hospital bed, when I repeatedly heard a woman saying "$27, 27$!" Painfully, I raised the head of my bed, and lo and behold, I see a woman sitting near my feet. She had lime green light emanating out of her. Kool. . . And she was talking to someone that wasn't there. She was very angry with the cheesecake she had paid $27 for.  I told her that I thought she had gotten what is called a dump cheesecake pie, but she could not hear me. She was on an endless loop saying and doing the same thing.  I was in so much pain and loopy that I went back to sleep. That was an added perk to my hospital stay.

I was in the hospital for two weeks and I want to give a shout out to all the wonderful healthcare providers that helped me. Much appreciation to the dedicated nurses and techs of three tower two. I was thrilled that one of the PAs to my Neurosurgeon was a young black woman and I told her that I was proud of her for being a young woman of color in such a demanding, male dominated field. She appreciated it. My two surgeons were men of color, and I'm sure I had transference of my father.

Of course there were a few healthcare workers that I felt should retire. They were jaded, exuded indifference, and brought in a black cloud every time they were in my room. But they were the minority.

This story about my second spinal surgery is pretty cut and dry. But know that the emotional challenges that brought me to this point, and that I am now facing, were and are profound. I feel I do not have the words to describe how I felt slowly losing the ability to use my hands and to move and walk. Not to mention the misery of constant pain.

The chronic back and leg pain started close to four years ago and got worse to where it was unbearable all 2024. My invisible spinal deterioration began to manifest outwardly visible in the last two years.  Although living with chronic  24/7pain was the worst; dealing with living in a disabled body was a close second. I now have a long neurological rehab in order for me to regain as much of my abilities as I can. The road ahead is going to be fraught with other emotional ups and downs. No doubt I will write more about this later.

But for now, I am entering 2025 hopeful. Send me your good vibes.

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.