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PRECIOUS GIFTS….

With every ache and pain you utter softly  “Oh, God” how much, how much longer, how many places?  The chronic pain becomes common place, and the opiates you consume seem a common ritual.  Five pain pills in the morning, five pain pills in the evening, three in the afternoon when the pain prevents you from transferring from the wheelchair to the bed. Then, you wrap yourself in three pain patches, a choice of two different pain gels for various body parts, and  an  electronic gadget to attack muscular pain, and pack a joint or two in ice cubes! Some days aren’t so bad, yet, some are worse.  Some days you question God, you don’t like those days.  

On the days that you question God, for half a second at a time, you want to give up. You are afraid that God is waiting to take you, and your’e pleading with God for more time. More time to get better, do better and get better help.  You feel your breath slipping away, gasping for hope wincing with pain from simple movements for some, huge ones for you. The  tears start to flow, the panic sets in, and your  short future flashes before your eyes. How many days have you felt this way, or better, how many years? How many more days or how many more years?  You know, and I  know it serves no purpose to continue to talk about the negativity in your life that you can not change. But we have to cry out a little every now and then, or a little  every night, just to flush out the hopelessness.  To rid ourselves of the self pity, to make way for a new day, a day with hope.

Every morning, moments before I open my eyes, I experience a re-lived exuberance. I lay there quietly, relatively peaceful and hopeful. There are birds singing, coffee brewing, the promise of little kid’s laughter in the backyard and the anticipation of a great productive day ahead. I think of what I’d like to accomplish today. Maybe I’ll gather the family and we’ll go to the beach, oh heck, it’s so close maybe we should all walk to the beach. Maybe a day of shopping for all the little bits of things I neglected to buy earlier. Or just take advantage of the time and energy and clean the closets. Then I move …….  Damn, the bubble is burst! The dream is over, and I’m back!  The pain and immobility tell me loud and clear, you aren’t going anywhere!

But we go on, every day we go on.  And how ? By remembering to pepper our life with the little gifts that we are offered. The seconds of laughter from a bad joke, or the belly laugh from a good one, the small boy who opens the door at the store for you, or while fumbling for change with your twisted fingers, someone offers to pay the cashier, the car that insists you cross the street and he/she waits patiently for you.  Or when having a sad look on your face and your seven year old grand daughter gives you a small bowl of ice cream with animal crackers propped up in parade.  These are the precious gifts we receive that help us through the pain.  So  look for those gifts, they aren’t always easy to find, and appreciate them for what they are  “little doses of God’s work”.

VACATION EXPRESS…..

Oh vacation, glorious vacation. The time away from home that feeds the soul.  A nice break in the routine, a chance to experience new things and possibly new cultures. A promise of fun times and no dishes to wash, yeah!  I chose a destination, inquired about all the necessary disability concerns I have.  accessibility, distance, bathroom, facilities etc. I pack and get ready to go. The hotel is beautiful, one of those hotels which pride themselves for the luxurious, at home feeling. I was handed the key to my room just in time, I couldn’t wait to get some rest. I looked around the well decorated handicap accessible room, sporting a nice blend of naturals. Then I enter the bedroom.  What  the hell????? The bed is  4 1/2′ tall!  I’m in a wheelchair, I can’t walk or stand or lift my body weight with my biceps like an olympian. Now how am I going to get into bed? 

I’m a bit tired, my body is weak from the long ride on the bumpy roads and mentally this problem is a bit too much for me to comprehend.  I pull myself together, and start my course of action.  I purvey the room and realize I need a notepad to write everything down. My journey started in the bathroom.  I requested a roll-in shower versus a tub, but I neglected to request a seat in the shower.  There are no guard rails  around/near the toilet. The livingroom area has a loveseat and a club chair.  Both are too soft and low to the ground for me to transfer and enjoy watching television. The kitchenette area is nice boasting that it is equipped with everything you would need. The counter reaches  close to my neck.  The faucet is a long goosed neck faucet with tiny handles to release the water, barely in reach. The paper towels , soap dispenser and sponge, also out of reach.  The microwave is within reach however to place a plate inside would prove impossible. The cabinets which housed the dishes, champagne  flutes,  and cutlery, all out of reach.  The controls on the stove, all on the back panel, out of my reach.  The refrigerator I can access, the freezer to get ice, no. 

I called the front desk about my dissatisfaction and amazement.  How can a handicap accessible room be designed with so many things inaccessible to the handicapped person? How does this happen? I found out that for an establishment to  be given authority to use the phrase “handicap accessible”, a wheelchair has to fit in the doorway. When inquiring about accessibility, the entire establishment does not have to be accessible,  in order for them to say they are handicap accessible.  I call the front desk and request the mattress be removed from the frame to lower it.  The hotel listened to my concerns about the inadequate room, yet there was little they could do.  They offered to bring a small chair to use in the shower, that I didn’t think was safe, and to place articles on the counter from the cabinet for my use. I asked if anyone else had requested changes or assistance with the room, and I was told no.

This would lead me to think several things:People requesting the room, are not severely limited in their mobility, or extremely limited to the point they must be carried for their transfers etc. or just accepting the room for what it is.  I also believe there is a sizable portion of the handicap/elderly community that believes that travel is impossible for them and they just don’t.  I was in the last sector.  I do feel that handicap/elderly people should be afforded the same joys and privileges  as anyone. Where is it written that because you no longer fit into a certain criteria that you should no longer enjoy life or partake in all it offers?  The world is a changed place and if something doesn’t work, speak up!  I have found the majority of people are willing to  help accommodate anyone in need, if they know the assistance is needed.  I took a trip to Washington, D.C. that was eye-opening! Keep watching my blogs for that story.

A more extensive report about ADA definition and practical use will follow this article.

NAKED CONSULT…..

Many years after divorce and an empty nest, I wanted to whip myself into shape.  I dieted, joined a gym and even though I had positive signs to the “new” me, decided to take a short cut (If only I could see the public humiliation waiting for me). While watching television my eye captured an advertisement.  A new clinic downtown was promoting liposuction procedures.  They promised to reshape a problem area and produce with little effort the body you always wanted. (Don’t judge, this was years ago when these types of procedures were new and exciting, and we were stupid, or lets say, uninformed.) It was located in a well-known medical building and that was all the research I had to do.  I had a consultation appointment.

It was a beautiful suite of offices which made me feel I was under dressed. I should have worn heels, jewelry and a  church suit.  In the waiting room I’m asked if I would be interested in an assortment of beverages or light snacks, I accept an exotic coffee and wait patiently for the doctor.  I gaze around the room and I start to feel out-of-place.  Am I in the wrong office?  Huge photographs of beautiful women adorn the walls, some highlighting before and after pics.  I look closely at the before photos and I think if I looked that good I wouldn’t be here.  There are a few ladies in the suite with me, women who look like they needn’t lose a pound.  I’m really starting to second guess my decision.  The well dressed receptionist receives a call, it’s the doctor summoning me to his office.  The office is plush as well.  The doctor is very well dressed, dark gray pinstripe suit, coral shirt, matching striped tie and pocket hankie. We have a quick talk about why I’m there and into the exam room. I’m instructed to remove all of my clothing and cover myself with a small blue paper square.  (it was too small to be called a sheet and covered  my pubic area only.)

The doctor quickly informed me that I was too large of a person for liposuction.  He explained that he would have to remove an exorbitant amount of fat and there was no way he could predict how I would look. My procedure was referred to re-shifting a bag of potatoes. (how nice of him). I asked if you knew all of this why did I come into the exam room.  Surely he could determine my size with clothes on. He excused himself and said he had another doctor that he would like me to see, if that was ok.  I said yes. I sit there for a long while, cold with my little paper square hoping this other doctor was going to bring some hope.  Knock , knock the door slowly opened. To my amazement the room quickly filled with easily 2 dozen well dressed doctors in heels and suits.  Some of them had to find a place behind my exam table to allow the door to close.

The invited doctors asked questions to each other, I was rendered invisible.  Why do you think so much fat has accumulated on her body?  Do you think she has tried to do anything?  How old is she?  Has she given birth to children?  Were they live births? I felt so humiliated and for some reason, I could do nothing.  I felt my eyes starting to swell with tears.  I was directed to stand.  I was virtually naked, just folds of flesh is all I  was, no beating heart, no blood coursing through my veins, no nerve endings on my skin.  One of the doctors put his hand on my shoulder and asked if I wore panties.  I don’t think I responded.  He pressed down on my shoulder and back and turned me around.   They all wanted a good look at the “sideshow freak”. A tear broke free of the tear duct, and slowly ran down my warm cheek. I felt hands and fingers touching me, and whisperings of amazement and disgust. They exchanged words, thank you, this has been an experience, sounds of pure disbelief and they left. I was told I could put on my clothes.

Still not able to speak I did as I was told. I used the paper napkin they presented as a dressing gown, to wipe my tears, that were now flowing free. Without making a sound I dressed slowly and left in silence.

 

FALLING DOWN…..

Going to a local drugstore chain is something most of us do, mostly for the convenience. We can get anything from medicine to dinner or a hot latte. This is one reason so many people visit them.  However, you don’t expect to be targets for the local thugs, robbed and assaulted and in a wheelchair!  

An early summer afternoon Ted gazes out of his apartment window.  The weather is good today, and he hasn’t been out for a while.  Normally using hydraulic transportation, he decided to venture out to a local store just to get some air and a few things. Being in the square, he decided to visit a few stores, the weather was so good.  Getting late and feeling good, he thought to get an iced mocha from a local donut shop.  On his way back home, mocha in hand,  he didn’t see the two teenage boys walking behind him.

The first boy approached him demanding his money. He panicked, not knowing what to do or what to think. He said nothing.  The second boy yelled at him demanding money again and knocking his drink to the ground. Ted knew he was in trouble.  He looked around quickly for a passerby offering help.  Oh there were passersby , just passing by.  On a busy street, a dozen or so people were in his view, yet not one was coming to his aid. Afraid, he quietly said to the boys I don’t have any money, they didn’t believe him. They yelled obscenities   and with closed fists proceeded to beat him in his face and torso. He struggled to raise his arms to protect himself and the beating worsened. They tugged at his packages and kicked the wheelchair over.  On the ground they ripped away at his clothes until they found his wallet and some loose bills and change. They continued with the assault punching and kicking him, the pain was unreal.  Ted thought he was going to die, beaten to death on the street like a dog.  He didn’t want to die.  He tried screaming, yet he had no voice.  The boys humiliated him calling him names, and taunting him to do something, anything.

Oddly, the boys acted in a manner as if no one was around, yet people watched!  They stood and watched, they watched as they walked by, and watched as they drove by and not one person came to his aid.  A whole community  of passersby on foot, and in cars, afraid of two teenage boys.  They left Ted bleeding, broken and bruised, defenseless on the city street.  Most of his packages gone, no money, no identification, and no keys to his apartment.  As soon as Ted realized he was alive and the boys were walking away, he had the quickness of mind to realize they knew where he lived! Ted laid there dripping in his own blood, giving up.  It seemed hopeless.  He didn’t even have a way to get into the wheelchair.

After the boys (thugs) turned the corner and were out of sight, a spattering of people came to assist.  They called the police, helped Ted into his wheelchair, dusted him off etc.  Ted was terribly embarrassed by the whole ordeal and refused medical attention.  The police arrived, took a statement, but thinking that these boys had his address, Ted said very little. A store offered to sell him new locks on credit and a police officer walked him home since they couldn’t transport him in the wheelchair. Once arrived the officer checked out the apartment, volunteered to change the locks, and stayed a few minutes to calm him.

Why did this happen to Ted and to countless numbers of handicap and elderly people? Number one being vulnerability!  Who is more vulnerable than a person in a wheelchair, using a cane or walker or someone not quick with his step.  Someone who is defenseless is a target to any bully walking on today’s streets.

Secondly, to me what is more unforgivable is the cowardly action or non action of the dozens of people who watched. Just watched a defenseless man, an elderly, disabled man, in a wheelchair against two teenage boys.  No one screamed at them, no one ran their car on the sidewalk, no one approached them and no one called the police UNTIL they left the scene. What has become of our society when it becomes so easy not to look into the face of people on the street, exchange a pleasantry  or two?  We cannot go on like this.  Every time I enter the van for disabled people, I say hello, good morning or something. You would be surprised how many people do not even acknowledge me. The vans only hold 8 people, hearing my voice is not an issue, they hear me. Upon exiting I bid farewell, wish them a good day, in a louder tone than before. No response.  I feel sorry for them. What a lonely existence to live society all alone.  How very sad. If you have had a similar experience, let me know, let our community know.  Sharing your pain  and fear will lessen it.

Ted by the way, physically is okay.  He was severely bruised for a while, afraid to leave his apartment or let his friends see him. But he is mending physically and mentally.

 

REMEMBER WHEN…..

Remember  the last snow storm when it snowed every week, and we were buried in snow? Or, do you remember the storm of 1968? I came home from a tropical vacation and couldn’t find my front door! Pick any one, any storm, any three flakes that hit the ground that made traveling an issue for you. 

One evening I enlisted the company of a housemate to accompany me to a local mall.  Oh yes, there was plenty of snow on the ground, and it was dark outside, but I was going inside to a mall. The ride there was uneventful I guess, typical New England weather and traffic. And now the story begins!  Where was the van going to lower the hydraulic lift to let me out? The ramp extends about 6-7′ I guess, we just needed a clear, flat surface to lower the lift.  The street corners were poorly shoveled and didn’t look like they could clear the width of the 3’wide ramp. For a while we drove around trying to find an entrance for the ramp.  Finally, a block away, we did.  Unfortunately, I would have to  drive my power chair on the very narrow, poorly shoveled. walkway to reach the mall entrance. Well, with the assistance of my housemate, who knocked  down little piles of snow and ice with his boots, clearing a path, I made it to the store.  Thank you God!  Thank you Len!  

We had about 40 minutes until the van arrived to take us home. Directly across the street was a nationally known paint store chain, and needing a can of paint for the kitchen ceiling, you see where this story is going?  Light bulb idea, let’s get the paint.  We wait outside for a while, and watched people venturing down the sidewalk and crossing at the curb.  Of course we were imagining what the sidewalks looked like over an embankment of snow.  Well, it  looked like a clear path.  The adventure begins.  We walk down two blocks to get off the sidewalk, cross the street, now we can’t get on the other sidewalk.  The entrance is about two feet tall and barely 12 inches wide, why didn’t I see this?  Now on the opposite side of the street, can’t get on the sidewalk, I travel another 3 blocks past the store, in the street.   Approaching the corner curb at the end of the long drive is a puddle of icy water.  Now I’m going down a dark side street and I spot a driveway to a business.  The appearance is sketchy, so Len pushes me through the snow and up on the driveway to access the sidewalk.  It had chunks of ice from melting snow, depressions, of course narrow, just a mess. We finally reach the store just before closing.  Get our paint, and refuse to leave the warm comfort of the store, and venture that trek all the way back.  But we did. I will  admit I was cursing the whole time. about people, not the snow.

When are property owners (commercial and residential  alike) going to get it through their heads two words, LAW SUIT! I can’t even say the word should be responsibility to your fellow human being. ANYONE who injures themselves on your property through your negligence by not maintaining a clear path, is a law suit waiting to happen. They neither realize nor care about the difficulty we endure venturing out in the winter. And no, we can’t stay inside until late spring or early summer. Walking with an unsteady frame, or with a cane, walker or any other device your focus is on the ground. Every step you take could be the fatal step to 911 can you help me?  Laws are in place, however, they aren’t enforced. If you have had an experience such as mine, or worse let me know.  Especially if you name a place of business that is notorious for unkept property, let me know.  If enough of us speak up, legislators will have to turn up and do something to help us.  I’m  anxiously waiting to hear from you.  Together!

HOLDING HANDS ……

I remember the tender moment, the first time Nelson held my hand. A little faint of heart, a little weak at  the knees, a little giddie with my friends.  My hands, a little shaky  a few droplets of sweat threatening to release the light grasp, but I did it, I held hands for the first time.

Our memory cells are dotted with “our first memories of”.   And for the most part they are tender, sweet, fond remembrances of younger years, easier times or close friends.  The first time I experienced “first base” was a little dangerous. I thought for sure my mother was watching me from some imaginary space in the sky.  At that age, I thought she was everywhere, and she liked it like that. I read a lot about “3rd base,” hitting that “home run”because I heard the horror stories about sex.  I thought about the intimacy , the sexuality and sensuality, I wanted to be prepared for my first time. Remember? Do you remember the intensity of emotions, confusion, the breathlessness? Do you want that feeling back?

For the lucky few, the experiences continue with a mate or partner.  For some they secretly resort to the computer, entering into the sometimes treacherous world of “online dating”. Knowing, or not knowing what to expect, or what to do, but knowing with the hormones circulating throughout their veins they must do something. Sexuality and sex are delicate and controversial  subjects in the disabled and elder communities. Too often you’ll hear younger, able persons question why you are still thinking about it.  Of course when you’re 29 years old you think people who are 50 years old  should have one foot in the grave already. It is my personal opinion that the majority of health care professionals just don’t know how to address the issue properly.  So what happens?

There is a sizable community of disabled and older adults whose bodies haven’t caught up with what their minds can do, and they suffer, they really suffer. One woman I personally know, can no longer allow romantic television viewing in her home.  Other than the news, documentaries and children’s programs she will only allow zombie related movies. She will not even watch vampire type movies in her home, why? They all have either sex scenes, prelude to sex or intense kissing scenes that will make your toes curl.  By the way, vampire movies are very sexy… This woman looks at least 10 years younger, and mentally feels 30 years  younger than her “cracked” body supports. Another woman I know longs for the companionship, the tender, sensual side of a relationship.  Because of her disability, having intercourse is not possible. But does one not want to feel loved, and touched and thought of? Does anyone deserve not to feel love?

Sometimes discussing these issues with your doctor is pointless.  Patients have been encouraged to suppress their feelings, married couples in difficulty have been advised to physically separate, patients (non cardiac) have been advised that sex is dangerous to their health, all the while not solving or supporting the need for sexuality in their life.  What’s missing is the human component.  Touch is an underrated word and emotion, and humans thrive on it and love.  I challenge you to simply touch someone’s hand and note the reaction, not just theirs, yours.  Note the warmth, softness, roughness, the size, and your emotion.

If you have found yourself anywhere in this story of real talk and pain, please let me know. Rant a little, I don’t mind. Share your experience with me, you’re not alone in this. Disabled and older people experience real experiences that should be addressed, if with no one else but with us, each other.  For too long we have lived in isolation, so for once, let’s talk openly.

Statistics found on disabled/older people and sexuality was disturbing. What I found was muddled information with most of it negative. I was so struck by what I found that I promise to do extensive research and report back to you at a later date. 

THE CHERRY ON TOP….

The beautiful rugged, yet delicate Crocus breaking through the ice to appear. Imagine the ground, so cold and firm, full of ice pockets daring nature to emerge.  And there stands the Crocus daring us all.  Daring us to have faith to emerge from our darkness, to brave the new world, venture into the unknown and take a chance.  For without that chance there is no hope for life.  There is no hope to experience  the joy of that fresh air, the sweet smell of spring, the room to grow. Without that hope we will no longer survive, or have the chance to show our determination, our true grit.  And what we miss is so much. 

Having a “gray” day looking in the back yard, cooped up in the house for a few weeks, I longed to be outside.  In the distance I hear the grandchildren  screaming with excitement.  “Grandma, the flowers, the flowers are everywhere!” I don’t know what they’re talking about.  In the back yard, the same backyard that I was looking into, dozens of groupings of the star Crocus had emerged from their sleep.  I, who looked right over them, and saw just gloom and bits of the forgotten autumn’s  growth never saw the beauty.  The beauty that warmed me, and gave me visions of a lazy summer on the patio.  The beauty that filled me, when I would allow it to.  The beauty that we all need every now and then to remind us of life.  That life isn’t over, or ugly or worn.  Life is beautiful, worthy of taking a chance and given a second glance. Life is good if wrapped in a perfect package or a dented one.  If we just take the time to look at what we have, no matter how imperfect, life is good.  

In tiny “vases” of empty medicine bottles, and alien teacups and glassware my home is now filled with the tiny little, but strong and beautiful Crocus flowers. The little flower that could and did take a chance to emerge from a frozen bed to bring joy.  To lift the spirit, help conquer our fears and bring us the lesson for life.

FORGOTTEN BEAUTY…….

IMG_20160716_144917_1Forgotten

 

Beautiful things begin to fade and wither.  The vibrant purple once a stand out in the garden, now it’s hue has faded like droplets of rain on a child’s paint set.  The firm, tall stems once supported a glorious circle of fragrance. The strong, sweet and delicate fragrance that drifted on the warm summer air current to attract bees from afar. We were that flower. Standing strong against the wind and storms, with conviction, nothing could knock us down.  Our color was clear, our skin smooth with clarity and beauty.  And now? Has time withered us? Has our color faded to gray? Perhaps all these things are true. However, there is beauty  in aged and withered, there is interest in wrinkles and things not brand spanking new.  There is wisdom, intelligence, insight, thoughtfulness, and a respected beauty and charm.

There is a softness known to nothing else, and a resilience to the touch. Like the once vibrant flower in the garden thought to have outgrown their usefulness, we are hanging on with the strength in our veins and conviction in our souls, we are evolved. Beneath the once  near perfect, virgin exterior, we are evolved.  Peeling back the wrinkling on the stem reveals a new life that is worthy of support. The large beautiful petals of purple and white, shriveled, laying on the floor, have revealed a new delicacy of the remaining bloom.  We are that delicacy, and with the proper support given to the once independent stem, we too will stand strong again, displaying  our strength, our resilience, our vibrance  our worth.

False — The Daily Post

One morning you awaken from your bed.  Before rising you reflect on the previous day.  You worked hard at a community Farmer’s Market promoting the hospital you worked for.  You spent the better part of the day carrying chairs and folding tables into your little car. You prepared written material for marketers to read about health care, and information from other community groups to support their cause. All day long you put  on a smiling face, greeting people, approaching those that tried to run away, making small purchases from the local farmers. You returned all the equipment including chairs and tables, carried them down stairs to the basement of the clinic, and came home that evening, tired.  It was a very good day, and now a new day starts, let’s get up.  Alright, let’s get up, LET’S GO, MOVE……… I can’t!  I can’t move!

Flat on my back, all alone, what to do?  I try to reach the phone, but it is out of reach. What am I  going to do?   I finally put together a contraption to lasso the phone cord on the floor. Because vanity prevented me from being escorted to the hospital by an ambulance, I stayed home for 3 days until I could stand upright.  The first ER doctor assured me  that it was just a little muscle spasm.  Miss, take these pills they will fix things, and you’ll be back to work in no time. A few weeks later, the second doctor said it’s only taking a little longer, just wait.  Autumn is approaching while the third doctor is preparing a medical leave letter for 3-6 months absence. Then the same doctor prepared one for 6 months to a year. The last letter came from a specialist,   “It is doubtful that my patient will be able to ever return to her place of employment.  I am recommending total , long-term disability”. I remember that day clearly

I, like many of you have been given false hope a number of times.  Things are going to be okay, you can live your life the same with one leg as you can with two.  You can get a wheelchair and do better than before.  FALSE HOPE, is what they give us, yet true hope is what we give ourselves.  Every day we strive to regain some normalcy to our daily routine, to adjust to what the cards have dealt us.  Every day is usually a little easier, but not for all.

But ultimately life is what we make it, easy or hard. I’m making it the very best I can.  Sure there are pitfalls, that’s the learning curve.  When we fall, let’s get up, when we make mistakes let’s learn and when we learn how, let’s share.

 

 

via False — The Daily Post