Category Archives: Life and Leisure

Catching Up

By: JD Author, Reporter-Journalist

Before I ask you to sit with me, I must be able to sit with myself.

Before I ask you to accept my pain, I have to accept the pain myself.

Before I ask you to understand me, I must learn to understand myself.

Before I ask others to love me for who I am,

I must be madly in love with myself.

~L. Thorn

It’s been quite a while since I have taken the time to put words to screen and update my followers here on what’s been happening in my world.  Not that I have given up writing by any means. I have continued my professional blog and writing for a few commercial outlets, but I have been neglecting to post my work here as well.  I suppose it is because the medical and emotional battle that I have encountered over the last week and a half have drawn my focus elsewhere.  If you’re a grammar nazi.. stop now….this is a judgment free zone today, and until you can look in the mirror and appear flawless in the eyes of everyone, go find another blog to troll.

I have at least a dozen articles I still need to upload, yet it seems procrastination is my forte as of late.  Or perhaps what I have written may offend some.  Yes, me, the person who usually speaks her mind and isn’t afraid to handle the consequences of being an opinionated journalist, has taken a step back from opening my big mouth and putting a foot or two in in, so to speak.  I also know during this political year, we have heard enough rants from our candidates, that I felt the urge to spare you such conflict and controversial rhetoric.  It’s also a good thing I have kept my political view off of any blogs as well because I may lose several friends when it is discovered how much of a moron, I think they are for drinking the kool-aid of ignorance.

So here goes folks…. My last 60 days in review.

The beginning of February I was privileged to be present when my beautiful granddaughter made her debut.  A healthy and gorgeous little girl with the sweetest smile that would melt anyone’s heart within seconds.  The day after her birth, the announcement came that another one of my offspring would be bringing another child into the world this fall, adding even more joy to our lives.  Yet in the same month, my heart was darkened by a battle and struggles following me into the month of March, that have been hard to cope with.

I have always tried my hardest to be a strong person and found myself failing more times than not.  I find that I am smiling and just going through the motions of life and hiding some of the angriest and ugliest thoughts inside my head, which have been a detriment to me while I am learning to cope with southward heading health issues at the same time.  But how does one let the many thoughts out, when we try to be open with those closest to us, only to discover, they will never understand, because they have never walked the troubled paths we have? Some of you can relate due to the battles you endure that are equivalent in nature, and I always appreciate your wonderful private messages and expressions of caring that are genuine and some days I even appreciate the warm wishes and words of encouragement from those who express them for ulterior reasons, they give me a reason to snicker and scratch my head in amazement.

My greatest weakness is coming to terms with limitations my health creates for me and indecision as to what my future holds for me, and creating goals that almost seem impossible, and drawing the line between what I know I can accomplish and what will only be a dream.  It sometimes reminds me of taking a journey in life and traveling only to discover that your traveling that road and all of a sudden you realize that the luggage and travel maps you intended to take on that journey are left back at your starting point and you get lost along the way… alone.

Ehlers Danlos and Hypermobility Spectrum creeping up and kicking my butt was one of my biggest fears in life, but actually it has not been near the battle this year that the Arnold Chiari Malformation and Congenital Cyclic Neutropenia boxing match has been.  It has been and continues to be an all-out fight.  The ringmaster has taken a nap and the rounds keep going, with no end in sight.  I have my boxing gloves on, but haven’t had the strength to get in as many good blows as I would like.

Having good health insurance is something I focused on long ago, to prepare me for the impact of many medical tests, therapies, treatments and medications that may be needed as all three conditions progressed, but I was not quite prepared for all the regulatory changes due to politics, the misunderstanding and callousness of others, nor the misguided support that was more an emotional wasteland than a benefit.  Discovering that even with good insurance, your medication intended to keep you alive is costlier in one month than a cremation, should you die can be eye opening.  Just don’t express that frustration to others, they may get the impression you’re giving up.  Those who know me well, do understand that I can be snarky at times in my comments and are well aware of the fact that I plan to go nowhere at my own hand, by ignorant choices or plot.  I am a fighter, always have been and will remain one, but something has to give.

Last night, I found myself reaching that proverbial bottom.  As I sat on my bathroom floor in tears at 2 am, I realized just how vulnerable to emotion and pain I could be.  I know I have people who care about me, love me, and family that is supportive, but they would never understand just how helpless and alone I felt at that moment.  It is easy to hide most of our weaknesses from those we love and who love us.  I have become really good at doing that with some of the people closest to me.  But I have to admit, it is getting hard to keep the filter on my mouth functioning at 100%.  That smile on my face or that inquisitive, interested look, is starting to fail at hiding the “What the Heck are you thinking”, “seriously??” “Yeah right, blow smoke up someone else’s rear-end”, and “look in the mirror fool”.  Yeah, that filter is failing.

It’s failing as fast as my get-up-and-go some days.  Granted I have added to that battle by deciding to register for college and finally take classes in something I love doing.  I do ask myself why, and the only answer I seem to be able to give myself is, I have a desire to do something that may be beneficial in advancing me financially, since journalism work is limited with my medical capabilities at the present.  Granted some people become quite wealthy as a journalist, but the phrase “starving writer” was not coined as a joke.  I chose IT, computer servicing, repair and programming.  That is a field, I have in the past found rewarding and profitable on occasion.  With certification, I hope to be able to further that endeavor.  Perhaps it is also the need to keep sharp on technical endeavors and force my mind to stay sharp as I experience more cognitive difficulties my Multiple Sclerosis seems to be throwing at me lately.

Yes, believe it or not, I used to pride myself in the ability to remember things for decades.  Even useless information of no relevance has inhibited my brain, but the ability to recall basic tasks sometimes becomes a challenge.  I have never been so thankful to have a smart phone as I have been in the last few days.  The calendar app has been my lifesaver.  It emails me to remind me when I am supposed to get up and take specific meds, work on homework before a deadline and exactly which doctors office I am supposed to be at and when.  Then there is the wonderful Google® maps.  Lord I love that thing!  Although I know in my mind where every doctor’s office is and how to get there, I have actually found myself parked on the side of the road, clueless and upset because I forgot how to get somewhere I have been going to for over a decade just a few miles from my house.

As I deal with the cognitive issues, I also deal with the lack of common sense and judgment issues.  I find myself irritated with other people, and this is shameful of me.  As I sat there on the floor of my bathroom in tears, I reflected on how I felt inside.  I know medically I am a disaster right now, but emotionally I can take the reins and do something about it.  How can I expect someone else to understand me and be compassionate in trying to understand my struggles when I look at their exterior and might subconsciously judge them?  I find I am not the only one guilty of that.  Several of my close friends are as well, and perhaps if I change my ways of late, I can sway them as well to be less judging of me and other people they are around.  I can’t let my health make me a bitter person, I have to find my happy place again.  I needed to find the side of me that never decided how a book was until I opened the cover and read it.  I did the only thing I knew I could do.  I picked up the phone and called a journalist and talk show friend of mine who also has Multiple Sclerosis and we talked for hours.  I rarely talked much to this individual, but had held on to their phone number for several years after we met on an NBC talk show airing.  It was the most healing conversation for me emotionally, and I was surprised they were willing to take the time to just listen and share their personal experiences as well.  It was the first time I was able to just be 100% me, struggles, emotions and all.

It was nice to open up to someone I didn’t have to see every day.  Someone who could be neutral as I shared every little detail of my life.  From work or lack of, to my relationships and medical, the conversation released a heavy burden I bore.  It was easy to just let go, because I knew that they were listening without judgment and ill advisement from lack of experience.  After that call, I felt refreshed, I felt like I could get back into the boxing ring of my life and kick this battle’s butt.  He told me to start believing in myself more and just live one day at a time, one week at a time.  He reminded me of the importance of walking through life with people that walk at the same pace as me, and spend less time waiting for people to catch up to me as I reach for my future.  In life we all move at different paces to our goals, choose those walking at the same pace forward, and you spend less time looking over your shoulder, wondering if they really will meet you at the end of that trip, or not.  I felt more confident.

So now here I sit, sharing with those in my world a not-so-picture-perfect me.  I won’t share the most private details, and I know things will change because I can change them.  But I will share a few of my challenges with you as I fight this medical battle as best I can and within the limits of my ability, my finances and my skill allows.  I will meet every challenge head on and without looking back.  I will rise above them and not let them destroy me.  My congenital neutropenia has stripped my immune system of the ability to fight anything and near everything germ and fungal wise in our natural environments making work outside of the home near impossible.  Working from home has its limitations as well when I am so tired and weak I find myself eating a peanut-butter and jelly sandwich because I haven’t the strength to cook.  I struggle with some cognitive issues but have adapted by using reminder apps and sticky notes all over my house.  Some days the pain seems like it is going to suck the breath out of me, but asthma from allergies beats pain to the punch and I fight for every breath to do things in my house.  I know it will eventually pass, but damn if it isn’t a struggle at times!  I take a mental time out and remind myself that if I am breathing, I need to consider myself lucky, because someone else in the world stopped breathing today.

Earlier today I got an even better look at myself as I walked past my reflection in the long glass walled hallway of the medical center, heading to another well hated, infusion therapy session.  And yes, the torture-some, needle wielding nurses do work Sunday’s to keep us on the road to recovery, as we thanklessly complain about having to go on a weekend.  What I saw gave me a perspective that impacted me tremendously.  I stopped for a moment and stared. Staring back at me was a 51-year-old woman, in hideous sweat pants, a mismatched sweatshirt, leg braces, walker, crooked ponytail, dark circles from lack of sleep and a smile came across my face.  Yeah I was a sight for some judgmental eyes, but I saw something totally different, I saw how wonderful it was that I am blessed, despite the look of pain I felt.

The braces, although unsightly on my wardrobe that already had issues of their own, and painful to wear, were keeping the muscles in my ankles tightly in place, so I could get to my destination on my own volition.  The walker sported by most seniors, made sure that I had enough balance to keep me from face-planting and ensured that when I needed to take a brief pause down that long hallway to my destination that I had a perch to do so on.  When so many people cannot even walk or are missing a leg, foot or toes.  It may hurt like hell some days to walk, but at least I have limbs to feel that pain and take that step.

The sweatpants, although tacky as ever, were at least clean and fresh when so many people haven’t the luxury of clean clothes daily. The arms that held on to that walker and pushed it forward to motivate my legs to press on, still exist and I recall how wonderful those arms are to have.  I can use them to reach out and hug those whom I love, feed myself and put on the hideous attire I had on, all by myself.  I raised my hand up as I stared at my reflection and wiggled my fingers, thankful that I have all 10 to do so many things, even when they have a mind of their own and don’t always cooperate, I have them!

I looked at the dark circles under my eyes, and started to laugh. They looked misplaced as they sat behind my glasses and the yellow mask I must wear as a safety measure from germs for which I cannot battle very well.  I know they made me look like a hungover bum, but at least I could still see out of my eyes, when so many people are blind and cannot see the beautiful things in the world, that we sighted people take for granted, or use to judge the appearance of others, when we need to take a hard look at ourselves in the mirror.  I am blessed.  I do think however that I should attach some fake eyelashes to the rim of my glasses and paint bright lips on the mask, so I can give others a chuckle in case their morning is rougher than mine.

After the few moments of reflection, I decided I had better move along before someone assumed I should be rerouted past the infusion center for my treatment and be shuffled further down to the psychiatric ward for therapy.

I managed to get through that morning infusion without as much aggravation as the previous one and with a renewed sense of hope and appreciation.  The medical battles are still here for a bit longer. I know I will continue to have many struggles off and on as life moves along, but I will learn to better fight them emotionally, and share more of my journey with others, in hope to help people find a way to cope as I am learning to do.

Every day we are given is a blessing and gift from God, and instead of thinking of where I want to be in the future or feel I should be, I will sit back and just appreciate each day as it comes for what that day has to offer and be thankful that it exists.  I will try to not have any negative thought about another person’s struggles, appearance or demeanor, without reminding myself of my own reflection that is not perfect either.  Most of all I will fight for what I want and need and not what might be could be or would have been.  I fight for me, because in the end I am accountable to me.  I am weak, I am vulnerable, I have flaws, but so does everyone else, let’s lift each other up. I am sure there will be days I have to take a step back again and remind myself of my own posts here, and try hard not to lose myself again, but that is the beauty of free-will, we can choose to live our lives to the best of our ability and adapt.

Time for me to do some adapting, I am off to finish my homework, do a few more job applications and actually make myself lunch before the side effects of that morning infusion kick in and make me want to crawl in bed and sleep for about 12 hours.

©Copyright protected 2016: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467

Time for an “EYE Exam” for the “Mental-Visually Impaired”

By: JD Author, Reporter-Journalist

 Judging a person doesn’t define who they are, it defines who you are and when you put yourself on a virtual pedestal by acting as if you’re better than someone else, remember, they perhaps too were better than you,  at one time in their life.

 

Vision and our eyesight are important to our daily function.  For those who cannot see due to genetic birth defects, disease and injury learn to adapt to their surroundings.  Those of us who can see, with or without glasses, as well as those visually impaired are inflicted with a different kind of vision loss referred to as a mental vision deficiency.

When we look at others in society, we tend to consciously or unconsciously judge them according to what we see, or perceive to know about their circumstances.  When we see a total stranger on the street, dressed poorly, and without means, we assume they are a worthless individual.  We may wrinkle our noses in distaste or we may feel poorly for their situation and understand.  It all depends on our mental vision as to how we react.

I started observing the comments and reactions of my close friends, family and acquaintances over the past year, and learned well how many of my close friends and family were more visually impaired than the majority of my acquaintances.  The conclusions I drew were discomforting.  I suppose it is because, if it were not for them knowing the individual I am, with all my personal weaknesses, just how they would be perceiving me, had they lacked knowledge of my circumstances.  It’s unsettling to even process.

I think society becomes more judgmental as their circumstances change.  Perhaps some do not even realize that their impairment is noticeable to everyone but them.  Of course how do we recognize a mental vision deficiency in the people we know?  It’s quite simple if you actually use your real eyes and ears, to notice the comments, responses and reactions they have to other individual’s situations, appearance, financial status or environment.  They are the people who manage to spew out something negative about everything and anything every chance they can, without even noticing they do it.  The people who tend to let a negative comment slip about someone not as financially well off, or have all the solutions and answers as to why the person inferior to them on the economic ladder is inadequate.

I call the people who have this vision deficiency the underprivileged, because they have never had the experience of appreciating the value of the littlest of something, because they have never had the experience having or owning almost nothing.  They become so wrapped up in the false sense of security that “this could never happen to me”, “my job is secure, so I can spend away and rub my ‘status’ in the face of less fortunate” or snub their noses up at the less successful.  Little do they realize, that based on statistics, the majority of the working poor, homeless and impoverished at one time held successful jobs, had money, vacations, working cars, and credit cards to do all the things they do now.  And like them, they too felt “superior”, and immune from any circumstance that led them to where they are.

Now that you have realized that you may suffer from this visual deficiency, take a walk back in time and see just how important the people you see as “beneath you”; have made themselves a part of history, and you have done exactly what to make your mark in time?

At one time there was a folklore story about the term piss-poor, and stating that people were so poor that they had to collect their urine to sell to tanneries, and the term was derived from there.  They also say that some people were so poor they couldn’t even afford a pot to piss in, hence the folklore phrase can’t afford a pot to piss in, allegedly came from.  Needless to say, after quite a bit of research I discovered, the story may seem to fit the phrases and part of that may be true.  Yes, urine was used in the stages of removing hair from animal pets in the tanning process by the Romans centuries ago, but urine was not purchased for this purpose, it was readily donated.  It isn’t like back then they had flushing toilets to dispose of the liquid toxin that permeates air with ammonia like aroma rapidly, from uric acids.  The Romans were however known for their taxation of said urine they collected.  The most famous pee-taxer was the first century emperor named Vespasian and had nothing to do with that notion of piss-poor either.

The word PISS associated with urine, a bodily function considered of no value outside of excreting waste, did not truly make its debut in public print until around mid WWII, when penned by Ezra pound in her writings in 1940, when she invented the phrase piss-rotten to refer to minute and worthless, in a publication.  I suppose over the years that is how we became familiar to the term piss-poor, and it was later coined into a folklore tale about being too broke to be of value and the too poor to afford even a pot to piss in came about.  Gotta love legends, tales and folklore!  They do have a sense of opening our eyes to other people’s plight in a not-so-colorful manner.

So next time you see someone with 90% less than what you have, don’t see them as piss-poor, for they are far better than worthless.  Although their wealth is not visible to your limited sight, and to someone, somewhere, they ARE priceless. They have value, and YOU never know when there may come a day when circumstances you think you’re exempt from, will take hold, and you won’t even have a pot to piss in.

Well now that you’re seeing a bit clearer, let’s look at another way we label the less fortunate. Oh yes, I am on a roll here!  We’re going to take a language history journey today.  We’re going to look at many of the words you roll around in your head when you see other people through visually impaired eyes. Ever wonder why people are sometimes looked on as dirt-poor?

At first I thought it meant, when people of lesser stature could not afford running water, and shelters were not available to seek out cleansing the body by bathing often and having to share bath water.  It is said that in poor households, a bath-time consisted of a big tub filled with hot water. The man of the house had the privilege of the nice clean water, then all the other sons and men, then the women and finally the children. Last of all the babies! By then the water was so dirty you could actually lose someone in it.  I was wrong.  That phrase came from something else, however, we now know where the saying, “Don’t throw the baby out with the Bath water’, came from. The true origin of the phrase dirt-poor came from the reference to people who were too poor to afford anything but a dirt floor in their cabins and homes over a century ago.  Now picture your world, and how you appreciate a floor that is either; carpeted, tiled, wood, or laminate.  I bet you appreciate that.  But does it make you any more important than the people who had the dirt floors that were in the first homes of Thomas Edison and Alexander Graham Bell, who held such vast wealth of knowledge and skill between the two of them, that they broke the ground on creating all the luxuries you take advantage of now as a sense of entitlement?  Swallow that one, next time you gulp down that pride to make room for humility.

The term dirt-poor was actually derived from the poor working class that actually did have dirt floors.  Of course they were not just by choice, and not always the only conditions that would make us cringe if we had to live that way now.  Much like some of the homeless living on the street who cannot afford the luxury of a real roof over their head, and wish they would, our ancestors lived with dirt floors and many other accommodations that did sculpt more of our language than you realize. The floor was dirt. Only the wealthy had something other than dirt. That is where the saying dirt-poor, came from. The wealthier on the other hand, played a role in creating another term were familiar with.  They had slate floors that would get slippery in the winter when wet, so they spread thresh (straw) on floor to help keep their footing. As the winter wore on, they added more thresh until, when you opened the door, it would all start slipping outside. A piece of wood was placed in the entrance-way. Hence: a thresh hold.

 Just think of being that poor when you go to sleep at night.  Perhaps the next time you see that homeless person who will be sleeping under the stars at night and offer them a ride to a shelter, or if your too “good” to put them in your vehicle, at least offer directions and a bus pass.

As you see the food drives on television and in locations all over, you get the tendency to sometimes drop a notion or two of edibles into the bins, and yet when you walk past a person holding a sign “will work for food”, you wrinkle your nose and walk away, and then later make some snide remarks in joking to someone about the pathetic loser you saw begging as you fork down that steak like a rabid dog devouring its prey, taking no second thought to the thousands who see steak rarely, or skip meals because there is nothing to eat.

While seeing some of the people I know do this very thing, I also noticed they are the people who also have some of the most revolting eating habits and manners around!  I have not really ever laid eyes on a poor individual eating scraps that shoved it in until their cheeks puffed out like a gerbil then chew three or four times then swallow, as if the food were going to escape their eating utensils, like those who afford better nourishment, and have the pouch above their belt-line to validate their over indulgences.  After taking the time to focus and clear your field of vision picture what it means to not have that perk.

Envision the poor people in past generations who cooked in the kitchen with a big kettle that always hung over the fireplace or on a cook-stove.  Every day they faithfully gathered wood and lit the fire and then proceeded to add things to the pot. They ate mostly vegetables they grew and dried. Sometimes if hunting was scarce, they did not get much meat. They would eat the stew for their only meal, which was dinner, when the family was most likely to all be done from the day’s work and chores. They would then leave the leftovers in the pot to get cold overnight and then start over the next day.

Sometimes stew had food in it that had been there for quite a while. Hence the rhyme: Peas porridge hot, peas porridge cold, peas porridge in the pot nine days old. Luckily the pot was not always just peas! Sometimes they could obtain pork, which made them feel quite special. When visitors came over, it was customary to hang up their bacon to show off and not appear as destitute to others as a matter of pride. It was a sign of wealth that a man could, “bring home the bacon.” They would cut off a little to share with guests and would all sit around and chew the fat.  So think about that next time Aunt Bertha gifts you that fruitcake (eww), donate it to a food pantry instead of tossing it or punishing someone else more fortunate by re-gifting.

Many quotes from the past are reflected in our conversations and thoughts today.  Surprising since the majority of us, not only implement the quotes I mentioned, but we also use them as means to degrade others when our vision is distorted.  Whether we do it consciously or unconsciously out of habit, we do it.

I think it is time we all do a vision check.  Look deep into our hearts, reflect back on our comments and actions over the years and start to rethink of how we should see those around us.  We need to do a reality check on our sight.  We need to write a prescription for “glasses” of awareness.  The people we judge by their circumstance, by what we see, ultimately deprive us of the true ability to see clearly.  We are missing the ability to see a person for their soul, their heart, their inner beauty.  We see only what we think will never be us or anyone we know.  But that is our impairment.  That is our vision deficiency. That ugliness we see with our poor vision could be a glimpse of what other people will see, when they look at us one day.

I had the opportunity to reflect back on my life and how I too once had a vision deficiency of epic proportion, when reality smacked my eyesight into focus.  I too was one of those people who cringed at the sight of people in torn clothing, dirty and begging, and being a bit judgmental of their circumstances, and then went from the 6 figure income and fancy home, car, steak dinners weekly to the state of 4 figure income, homeless, and wearing clothes that looked like they were rags.  I like many of you thought I was exempt, until it happened.  Luckily McDonalds has bathrooms for free otherwise I wouldn’t have had a pot to piss in!  Circumstances changed and I rose from that situation and time in my life, thanks to people who had better vision that I had at one time.  But I learned a valuable lesson.  I also learned a new found respect for those without, and how to be courteous in my words and actions.

I try to NOT comment negatively on things and focus ONLY on the positive.  When we make a negative comment about something others find excitement in, we make them look at us as negatively as the comment we just spewed from our lips.  Changing our vision isn’t an easy task, were brought up in a society where we feel that it is the fault of the poor person that they are in that situation, were tempted to stay blinded, stay judgmental, because we do not want to ever think of ourselves as vulnerable.  We often forget, we are all human, no one is any better than another individual based on what we have or have not. Nothing in life is a promise, no one is exempt.  So always look clearly, work to correct your sight and understand…..

The way you see others does not define them,

It defines you, and your character,

Or your lack of.

 

Research references for this article are available upon written request to anunsilencedvoice@gmail.com

 

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467