MY VIRTUAL VACAY

I see palm trees. I see white sand. I see water so sparkling clear that when the sun's rays bounce off of it I am momentarily blinded by its intensity. Sitting in my beach wheelchair I am close enough to the water's edge to feel the cool water lap at my does and the squishy sand between them. Bliss.

Healthline Medical

I am sipping a Margarita and eating sushi.  A Mariachi band is playing in the distance. I watch the sunset in hues of purple with a hint of pink, orange, and gold. It is God's masterpiece.

 The most handsome man I have ever seen sits at the table where I am sitting sipping my drink. (He'll realize his mistake in a minute. He will make a clumsy attempt to apologize for his error before retreating never to be seen again.)

He seems not to notice my disability/powerchair. He also does not notice that I am sipping my cocktail through a straw. Or, if he has seen it, it does not seem to bother him. 

What is wrong with this dude?  Any other man would have bailed the minute he saw me. 

A powerchair does not attract. A powerchair repels.

www.tripsavvy/com  

 We begin chatting. We discover that we share many of the same interests. Movies.  Music. Art.  We both have great admiration for the artist Frida Kahlo. I tell him that It has been a dream of mine to visit La Casa Azul.  "That is the main reason I have traveled to Mexico, " I tell him.

"I have a friend who works as a tour guide at La Casa  Azul. I could arrange a private tour for you if you like. Tomorrow?" he asks. (I knew that he was a local because of his accent and how handsome he was. Muy, muy guapo. Omg. I hope my mouth didn't fall open when he asked.)

"That"s very kind of you, " I said. I get so nervous by his offer that I start to cough. My words sputter out between coughs. Nothing is more attractive than watching a disabled woman choke on her own spit. He'll surely head for the hills now.

He waits until my coughing fit ends before saying, "I would be happy to make the arrangements for you. I have one request, however, (I knew there would be a catch.) May I  join you on your tour of the museum?"

Wait. What did he just say?  I silently promise myself that I will look into getting that hearing aid. I must've misunderstood him.  He repeats his question. No need for that hearing aid. I understood him perfectly the first time.

A million thoughts run through my mind. The one at the forefront is What will my PCA Trish say? Trish has given me my freedom on this trip. However, allowing a man I know nothing about to accompany us to the museum would test her limits.

"Why?" I ask bluntly.

"Por queue?" he asks.

"We've just met. I am guessing you saw me sitting alone and thought you'd be kind to the woman with the disability. Do your good deed for the day. Am I right?" I can feel my anger growing. This has happened too many times in my life. I let my guard down. In return, I got a massive broken heart.

"You could not be more wrong. I saw a beautiful woman sitting alone. She looked like someone I would like to get to know. I was wrong. Even though we have a lot in common, you are too angry. You are too negative.  I like positivity. Your disability is a non-issue as far as I am concerned. I was taught not to judge people on outward appearances. To see the person first. My name is Diego. Rodriguez. I  manage the main restaurant in this hotel. Mucho gusto," he said, shaking my hand and then dropping his business card in my lap to prove he was telling the truth. 

"Nice to meet you," I reply. I tell him my name. My head is down. I avert his eyes. My voice comes out in a whispered embarrassed tone.

"If you'll excuse me my break is over/ I must return to my duties at the restaurant." Diego begins walking away.

"Diego wait. I would be honored to have you join me on my tour of La Casa Azul," I tell him.

I finish my Margarita. Hit the joystick of my powerchair and begin the walk back to my room where Trish I waiting to help me get ready for bed. How was I going to explain my evening to her?

It took all night to convince Trish I had not lost my mind. She kept repeating that question over and over.  It was five in the morning before Trish gave in and we finally got to sleep.  Diego and I had agreed to meet at the museum at ten o'clock.  There would be no time for an extra few minutes of sleep this morning. Wake up, do my morning routine, and head to the museum. 

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Wikimedia Commons Peter Anderson

 Diego was standing at the accessible entrance waiting for us when we arrived at the museum. I introduced Trish to Diego. I could see her stern demeanor soften as she shook his hand.  Diego introduced his friend, our tour guide, to us.

I loved La Casa Azul with its vibrant colorful kitchen. The rooms were left as they were when Frida Kahlo lived there. I  definitely felt her presence.

My favorite area was the courtyard and garden. I imagine Frida sitting in the garden alone enjoying the quiet while her beloved monkeys and birds keep her company. I imagined her entertaining guests in the courtyard. Enjoying relaxed conversation in the same way Diego, Trish, and I were doing now.

Our tour ended much too soon. I promised myself I'd find a way to return to The Blue House someday. Diego said he had to get back to work. He invited Trish and me to dinner at his restaurant that night, our last night in Mexico. Tomorrow we would board our flight home. The magic of Mexico would end.

"Thank you for the invitation, but I am tired. I have to pack. You two enjoy the evening without me," Trish told us. I give her a grateful look.

"I will reserve a table for us, he says, nodding to me. I told him that I would be sitting at the table where we met at six o'clock. "We will have cocktails on the patio. Then I will escort you inside to our table," Diego tells me.

Our last evening together was better than anything I could have imagined. The sun was setting as we sipped our drinks. My final sunset in Mexico did not disappoint.  

We went inside to find the chef had prepared a feast for us. Everything from taquitos,, and fish tacos to a vegetarian stew. For dessert, flan, and churros with a rich chocolate sauce for dipping.

We learned about one another in the two days we spent together. The most surprising thing for us was how much we would miss each other. We promised to email and video chat with each other. Diego promised to visit me.  We had no idea what the future would bring. Life was not about guarantees.  

We finished dinner, and the patio was illuminated by tiny white lights strung through the trees. We sat in silence. I knew it was getting late. We had an early flight in the morning.  "I should go," I told him.

. 

Diego was wearing a pin on his lapel of the flag of Mexico. He removed it from his lapel, placing it in my hand. We kissed. Then he was gone leaving me staring down at the pin in my hand wondering if the past few days had been real or only a dream.

"Feet, what do I need them for. If I have wings to fly.” ― Frida Kahlo  

Artist Louise Gustafson 

 

A ROCKER CHICK WANNABE

My mom offered to purchase floor seats, first row, in the section reserved for wheelchairs for one of Cher's Farewell Tour stops in STL. The offer was one time only for a once-in-a-lifetime experience. Any diehard Cher fan would have jumped (Pun intended) at this offer. They would have been crazy not to. Call me crazy. I declined, but not before I thought about it. A lot.

Why did I turn down my mom's offer?  My startle response. I was afraid Cher would see me holding my ears (and singing at the top of my lungs clad in the new concert tee-shirt that I had just purchased. The new shirt was worn over a previous concert tour shirt. I was a vision.) because of how loud the concert was, or that she would notice me startle. I did not want her to see me and think I was not enjoying myself. I did not want her to think I was a mental case who'd been given a pass for the evening.to attend the concert, but had to be back on lockdown by midnight or else she would turn into a pumpkin. 

My mom asked, "Why do you care what Cher would think?" My mom just wanted to give me the chance to see Cher up close. Not just on the big jumbotron screens. I did care. I did not want to look foolish. I was an idiot.

 

A friend and his band are going to rock out at a local cafe this afternoon. It's the band's first gig in two years. It's their first-afternoon gig. I wanted to go. They play loud hard rock. I thought about how I could lessen some of the noise. The only thing I came up with was headphones or earmuffs. The earmuffs would be sequined, of course, but still. No diehard rocker chick would be caught dead wearing anything with sequins. They would not want to miss one note of the rockfest.

Fear is a major factor as well. Fear of embarrassing myself or my friends. Fear of being laughed at. Fear of strangers asking themselves, "What is her Problem?"

I have been blessed with CP. I have been cursed with CP.

Have an awesome show.

Rock on.

Check this out:

Gene Simmons and Cher. She is the fan caller.

 

 

FILE THIS UNDER MISCELLANEOUS

 Dogs/pets are not allowed inside the house unless they've been approved. This rule does not bother my housemates. It bothers me. Knowing  that I share some of the blame for this rule makes me feel even worse

I learned a cold, hard truth. Not everyone was raised like I was. A person either has empathy or they don't. I have to accept that fact.

The staff here does not have to talk to me, answer me, look up from their phone when I speak to them, or allow me access to their personal property. (puppy)  I was hurt and shocked.  I get it now

All the staff is required to do is provide care. They do an amazing job. (The staff deserves hazard pay during winter storms They show up no matter what.). That's all I can ask for. I apologize to the staff member for not respecting her wishes. It won't happen again. In the nursing home, the staff talked to me and my fellow residents. Feeling connected is so important. I hate being treated like I am just a body with no feelings or emotions. That's what I am here  That's another bitter pill for me to swallow.

There is a silver lining. Dog are allowed outside of the house. If when you visit, you feel so inclined, bring your fur baby during the spring and summer. 

I fell off the wagon. (Calm down. I did not literally fall off a wagon. I thought all of you knew me better. Me, on a wagon?  Please how undignified.)  I had dessert. Chocolate pie. A  cocktail too. Gasp!  The weird thing is I did not enjoy the cocktail that much. The dessert, however, was a whole other story. I am back at it until April. Although, I really enjoy vegan meals. I may just continue to eat that way.

Thanks to Hulu I  have become obsessed with the MTV show Catfish. Nev and Max were a  great team. Funny too.  I am bummed that he left the show.  What's fascinating to me is the way the stories unravel   This has no relevance to anything. I just threw it in. 

Sometimes a blog post is just a blog post of my wacky introspective thoughts. Sometimes, my alter-ego, Prudencia comes out too.

File this under Miscellaneous.

DOG SPELLED BACKWARD

 

The word dog spelled backward is God. Dogs are angels on Earth  God is not physically with us. Dogs are.

Dogs are not property. They are living, loving beings. All they ask for is unconditional love. If you give them love, a dog will give it back to you tenfold.

There is scientific evidence that petting a dog can lower a person's heart rate and blood pressure. Petting a dog is calming. Being around a dog can brighten someone's day  That's why many LTC communities have pet therapy programs Some even have pets in residence.

A staff member has been bringing her Yorkie to work with her for the past few days. The puppy is so sweet and loving. Having him visit makes my day.

I know she does not have to allow me access to her puppy. Each day she allows me to pet her puppy is a gift to me. I hope she knows how much I appreciate it.

If I anger her she does not allow me to pet her dog. 

That's just about the worst thing you can do to me. Forbidding me to show love to a dog.

Some people think a dog is just an animal.  Lucie, as well as the dogs who came before her, were a part of our family. Lucie had her own Christmas stocking and she got a little ice cream on her birthday.

I hope she realizes what a gift her puppy is. How loyal he will be to her. How she will never be alone when he is around.  There is no better comfort than snuggling a dog when you are sad or do not feel well.

Please do not ever treat him like your property.

Take care of the angel you've been entrusted with. Look into his eyes. You'll see his soul.

YOU ARE GOLDEN

 

Dear Joanne,

I  am your past. I am the person you were in the year 2022. I am about to turn Sixty-five. For you, the year is 2027. You are about to turn seventy years old I think that's the age our grandmother was when we were born. 

Unbelievable Isn't it, Grandma? Oh, don't get your panties in a wad. Just a little humor.

What advice can I give you?   Let's see...

When you were my age you said you would rather be in a long-term care facility or in a hospital. You said you'd rather be in Hospice than live in a group home. You know that's a sin, right,? Don't wish your life away. 

At the same time, I get it. 

My hope is that by 2027 you will be in a facility that employs people who get it.  People who get you. People who will care for you with kindness  If you are not in a nursing home I hope that means you've accepted your living situation.     I want you to be happy. I want you to be cared for by people who are caregivers because it's their calling. Corny I know, but I have to believe caregivers like that exist. I hope there is a small private patio you can roll out to from your room as well.

That's why I wanted to be on Hospice. I saw first-hand how kind and caring those ladies were to Mom. Remember the Hospice worker at the nursing home? She always took the time to talk with me. She always took the time to give me a hug. I was not one of her residents. She just did it. 

I am so over having caregivers, aren't you?  More strangers have seen our butt. Can you relate to this scenario? " This is your new staff member. (whose name I am told, but two seconds later, I have forgotten.) She is going to observe your shower." (Whether you like it or not.) I inwardly groan. It's such a pain, but we just have to suck it up and go with it.

I hope that Alzheimer's did not steal your mind from you. I get confused sometimes. I can't remember things as quickly as I used to. I pray at seventy, you are still engaged, and that. you are interested in books, art, and all the other things you love.

You wonder what your life would have been like if God had not chosen to give you CP.  You'll never know. Instead, think of all the lives you have touched because God chose you.

You'd better still be writing in 2027!!! Don't let your typing finger get lazy. Writing has been and will continue to be a good creative outlet for you. You can create any life you imagine for yourself  Just picture it in your mind and then write the movie that you see.  

However, no matter how much you love the world you create in your mind, don't forget to check in with reality from time to time. If you don't you might start getting a little blue pill before bedtime. Who wants a little blue pill? LOL

Speaking of blue, don't let a beautician use that hideous blue rinse on your hair. You are not meant to be an old blue-haired lady!

Keep posting on this blog.

You Are Golden.

Everything will be okay.

 

YOU'RE ENOUGH

Dear Joanne,

I am you in the future. The year is 2022. I am two months shy of turning Sixty-five. I know that this fact is blowing your mind. You are about to turn fifteen For you the year is 1972.

I want to tell you some things that I wish someone had told me at fifteen. The sad thing is I probably would not have listened. I hope you will.

A potential employer is not going to give a flying fig that you know the lyrics to all of Sonny and Cher's songs, have all of their albums, have seen every episode of their variety show, and that you've seen them in concert twice. Cool stats, but useless knowledge for a job interview.

I know you envision yourself to be the next Rona Barrett. It pains me to burst your bubble, it's just not going to happen for you, Find something that you are passionate about. Pay more attention to what's going on in the world 

Interviewers want to know how you'll be an asset to them as an employee. They'll ask you where you see yourself in five years. You'll finish school at twenty-five. when you are asked this question in a job interview don't sit there with your mouth open and tell the interviewer you do not know. Have a plan  Be ambitious. Be everything that I wasn't Don't spend your summers swimming and watching soap operas Volunteer somewhere. Maybe someone will see past your CP, maybe they won't. But you have to try. 

I do not mean to be so hard on you. You can still have fun, be the great person you are, just balance it out. You want people to see you are a smart, intelligent young woman who just happens to have a disability. Not just a pop culture airhead.

If I had done the things that I am advising you to do my future might have been different I might be in a group home right now. I don't want that for you.  

Mom needs you as much as you need her. She doesn't want to be alone. However, it will be good for both of you if you go away to school. You'll get used to strangers taking care of you. Don't leave all of your care up to Mom until she physically can't do it anymore. Give her a break.

What is the definition of a successful person? Most people base an individual's success on financial gain. If that's true, I am a failure. Success can be anything that brings someone personal fulfillment. That's what this blog gives me. It's not award-winning. It's the little blog that could.

Don't let anyone ever make you feel like there is something wrong with you. Something that needs to be fixed. You're enough. You're good enough.  Don't give up!

I am proud of you

Love,

Your Future Self

I APPRECIATE YOU

When you tell me to talk correctly.  I appreciate you. 

You do not know that I worry that the day will come when I will not be able to talk at all. 

When you stare at your phone when I am talking to you without answering me. You tell me you heard me without looking up from your screen. I appreciate you.

When you are assisting me, but you have your phone on speaker. You try to assist me using only one hand. I can hear you. I can also hear the person you are talking to. They can hear what is going on while you are assisting me. I appreciate you. 

When you ask me who I think I am?  I ask you to please put down your phone until you've finished assisting me. You get angry. You tell me I don't pay your phone bill. I don't sign your paycheck. I can not tell you what to do. You end by telling me that if this agency was a Black agency that they would not put up with me. I feel somewhat confused and a little offended by that statement. I appreciate you.

When you tell me you are not going to wait on me hand and foot. If I want a meal I should come to you. I appreciate you

As long as my needs are met that's all that matters I have been told that over and over since moving here.

Things will be good for a while. Then you'll be obsessed with your phone or you'll ignore me when I speak to you. Your behavior will annoy me until I say something. You'll get angry. I'll cry. The end. It's a little dance that we do. The Joanne/Caregiver Dance.

I know I am just a series of tasks to you. Tasks that you have to complete before the end of your shift You forget that I am a person. Or, maybe, you really don't care?.

I appreciate all of you. Wanna know why? Well, for one thing, you have made me realize how happy I am to no longer have a cellphone. But the main reason I appreciate all of you is you show up. You can't stay home if there is inclement weather. You sacrifice  And, at times, risk your lives to get here. I appreciate your dedication.

When I tell you to get home safely when your shift ends, those are not just words, I really mean it.

I appreciate all of you because you have a very important job. You are the reason I am able to live my life. 

Thank you!