I Think I Have a Vision Problem

In the mainstream world, there are common thoughts about the blind. It’s believed that being blind means there’s no day or night there’s only dark. It means being lonely, separated from those we love, being lost and confused by what is around us and most of all it means being helpless.

When you are having a hard time understanding something there is a saying for how you are feeling — “I am completely in the dark.” When we use phrases like these, we infer some or all of those things.

Seeing does not come with light, nor is blindness a lack of light. True blindness is through lack of education and misinterpretation. Many sighted people are more in the dark than the blind.  The reason people feel sorry for the blind is a result of their own fears and ideas of what it would be like to be blind. 

You do not see a blind person as he or she is, but rather, as your fears about blindness make them appear. People are afraid of being blind, afraid of being in the dark. People believe that blindness is a terrible and hopeless condition in which to live. What they do not “see” is that these are their fears.

What they “see”, or think they “see” [believe], is that this is the way the blind person feels also.

 When you do this, you do not, in fact, see another person but a mannequin dressed in your fears. What you see is not really there; you make yourselves blind to the blind.

Most people see me as blind. I see myself as I really am; happy, capable, resilient and not alone. My way around the elephant in the room is the joke.

Joking about my disorder isn't a defense; it's plain and simple a fact that I accept my disorder, my blindness, and most of all who I am.

I am not afraid. I see myself clearly and it’s not the narrow squint-eyed vision of people who think they're seeing clearly because they have vision. It's hard to feel sorry for someone who can laugh at his own limitations.

The largest issue, I believe, is the fact that the deaf and blind do not have their own language. We have to rely on the same language as the sighted, and this language is heavily dependent on vision.

Think about the everyday sayings that most haven’t given a second thought to, “Let me see that?” when in reality what you are saying is “Let me hold that?” When something is being explained and you suddenly understand what is being relayed you exclaim, “Oh, I see.”

Then there are the phrases that have everything to do with vision but have nothing to do with what we see. It’s always darkest just before dawn.”  Meaning it’s always worst just before it gets better.

So let’s explore the English language and how we as blind and disabled “see” the phrases that are so commonly used and in most cases cause the sighted to feel uncomfortable when they are used with the visually impaired.

The English language with its wealth of idiomatic expressions makes the following characteristics of the blind and their daily activities possible.

Please note that this is only ‘the way I see it.’  There are no scientific ‘double-blind’ studies to validate my findings and since I am ‘stone blind’ these are coming to you ‘sight unseen.’

We may be excused for being forgetful because ‘out of sight is out of mind.’ We are very happy because ‘what the eye does not see the heart does not grieve.’ We are also very affectionate because ‘love is blind,’ however, we never have to worry about ‘love at first sight.’

We often ignore things by ‘turning a blind eye’ to them. We may be ignorant because ‘we are in the dark about things’ but do not underestimate us, we can still ‘see the light at the end of the tunnel.’ After all, we are not in the ‘dark ages.’

We are very friendly people and like to keep in ‘touch.’ We also tend to have a real ‘feeling’ for the world around us. Though we may not always be able to ‘see eye-to-eye’ in certain situations, and we may also, sometimes, ‘lose sight’ of certain facts, do not underestimate our ‘vision.’

Despite being blind we can still ‘look forward to something’ and ‘see you later.’ If we bump our heads we ‘see stars,’ and we may not always be able to ‘see what you mean,’ but we are able to have our own ‘view.’

We are not ‘blind to our own faults’ nor to the faults of others. You can try ‘pulling the wool over our eyes’ but you may find that nothing changes much.

We are so good at what we do that ‘we can do it with our eyes closed.’ We may try to burn the candle at both ends but will most likely burn our fingers.

Our medium of writing is easily ‘spotted’ and although it's not ‘pointless’ there is very much a point in using Braille and it is ‘outstanding.’  

Blind people enjoy a social life, however, one must bear in mind that if you take someone on a date, it will always be a ‘blind date.’

If we have too much alcohol we may get ‘blind drunk.’ Be warned that rage and fear will always be ‘blind rage and blind fear’ 

Rather than ‘the blind leading the blind,’ which may ‘not be a pretty sight,’ a white object is tapped about while walking down the street. Uneven pavement can be a real ‘stumbling block.’ ‘Blind alleys’ will not be too much of a problem though. We ‘walk by faith and not by sight.’  

We are not allowed to drive but it might be ‘a sight to behold’ provided we stick to ‘blind rises’ and go around ‘blind corners’ and only drive in the ‘blinding snow.’

‘Blind spots’ would not present a problem for us and neither should ‘night vision.’ We will not be ‘Blinded by the light,’ of oncoming cars, and all of these would be ‘a damn sight better’ than ‘flying blind.’

May we all not ‘lose sight’ of the fact that we are living in the age of so-called ‘Enlightenment’ where ‘Visionary leadership’ is very important and where care must be taken not to be ‘blinded by things that are unimportant’ and to always ‘keep your eye on the prize’ because ‘in a country of the blind, the one-eyed man is king.’

Although it’s hard for us to ‘set our sights on something,’ we rarely ‘miss the mark.’ We ‘set our sights high,’ and ‘focus on the goal,’ we take a ‘shot in the dark’ in the slim chance that we may ‘catch a glimpse,’ and hopefully not have ‘a dim view’ to that ‘first light’ before it ‘drops out of sight’ and we are ‘kept in the dark.’

We may not have the best fashion sense and often we will ‘look a sight’ but it is often times a ‘sight to behold.’

These are 'blind facts;' I hope that no one finds the subject to ‘touchy’ and not be ‘so blind as those that will not see.’ Perhaps all this has been an ‘eye opener’ to someone, and that all these facts haven’t left you ‘blinded by science’

Hopefully, all this has provided some ‘light-hearted’ relief and I have ‘shed a light’ on this sometimes ‘gloomy’ subject and no one has been ‘left in the dark.’ After all ‘a nod is as good as a wink to the blind,’ and unless my ‘eyes deceive me,’ I have ‘begun to see the light,’ and received the gift of ‘second sight.’

I hope that this was time well spent and that you do not ‘feel’ that I ‘robbed you blind.’

–SP

A Picture is Worth a Thousand Words

“You should have seen it. There was so much color and the way it was set up was just amazing. There was a – shelf like thing and like – this other area that was just – well like held the color of the side of – it's too hard to explain let me just show you.”

* You then pull out your phone and show a picture of the scene that was so poorly explained and BAM! After seeing the picture it all makes sense. The descriptive holes left by the narrator, fill in with the viewers own descriptions and evaluations now that he has “seen” the picture.

This act has been mimicked by each of us at some point in our lives, if not with a phone with actual snapshots, online pictures or back in the olden days, an actual book.

We sometimes lack the ability to validate what we see in mere words. As for me, I lack that ability with a number of things in my life. I have 10 years of higher education and I still lack the words to describe how I feel or what I see on a daily basis.

My accounts are basic, to say the least. Everything from, “I feel weird” – which we all know is the technical terminology for explaining any situation that isn’t normal in nature, to “I feel off” which is the only way I can describe the feeling of, well, being off or out of sorts.

I don’t have a picture or other means of describing how I feel or what is happening in my body and mind. I have the same problem when faced with the questions, what I actually see? Or how I do specific things? It is so frustrating to lack the ability to describe those processes.

I realized how much I missed my sight and how much I took it for granted, after losing it but what I didn’t realize was how much I would miss being able to describe what I was going through and how much I would miss those thousand word pictures to both fill in the gaps of my descriptions as well as the descriptions of others who try to describe something to me as a blind person.

As soon as we see a picture of whatever we are trying to explain, all of those descriptive deficiencies just magically appear. Which is where the quote “A picture is worth a thousand words” came from.

I have for most of my life envied authors and other writers who can describe things with such detail, or in just the right way as to be able to draw a precise picture of what they are describing in every reader's mind. This is one of the reasons I love to read and also why all readers have their favorite authors.

We all relate to an author who paints that picture with words so well that we feel as readers, we are right there experiencing every smell, sound, and sight as it unfolds right in front of us on the pages.

They do it in such a way that in most cases, it takes way less than a thousand words. They seem to have taken this well-known quote as a personal challenge.

Being as old as I am, (born before Google), I didn’t have the luxury of jumping online and searching for a picture or video that would give my horrific descriptions that much needed boost.

It was up to me to ‘Try’ – that’s the key word here, ‘Try’ to describe what I wished the beneficiary of my verbal picture to see, and believe me I tried.

There were times that these explanations took hours and even days of attempting to get the picture that I saw so vividly in my mind, to magically appear in someone else’s.

Most times, try as I might we both left the conversation unsatisfied and a little empty inside. I can say with total honesty and a lot of shame that there were many discussions where I would just pretend that I understood and could see what someone was telling me just to end the embarrassment and frustration that was building between us.

The sad thing is I still do this when people are trying to describe things to me today. It isn’t because I am blind and can’t see the picture that is worth those thousand words, and it isn’t that the purveyor is apparently lacking the ability to transfer those thousand words to another,  I believe the difficulty lies within us all both as the presenter and the recipient.

As I said before, I envy the writers who have that magical ability to paint a vivid picture with a few well-placed adjectives and metaphors. I am not pointing fingers, I lack this ability also.

Then there are the proverbial hand talkers. Those that must describe the things that are most important to them using only hand gestures. For a visual person, this is a great way to communicate the picture that is most important to the conversation.

Describing a layout, location or design is much more effective if you can use those visual cues that make the story or explanation that much easier to follow.

However, to a blind person, everything gets lost in translation. Let me give you an example:

“The handle comes up about this far, and it has a little nub on the end here so the other half can connect. Then it runs about this far by wire to the little wingy thingy that allows this here side to part the seam of the hub so you can squeeze in like this.”

Makes Perfect Sense – NOT!

Now if you can see the gestures and motions that paired with this conversation it would probably make more sense but to someone that is visually impaired, we’re even more in the dark.

I will admit that when I lost my vision I was afraid that I would never again be able to ‘See’ those thousand words that I so feverishly crave when descriptions run short. In reality, there are ways that those thousand words can be relayed that I never knew existed prior to losing my vision.

The fastest is having the ability to touch. For a blind person, touch is our vision. We rely on the pictures that our minds draw as we feel our way through the darkness.

Feel is actually a very important part of vision for the sighted as well. If I blindfolded you and had you walk barefoot through soft gooey terrain, without sight or any further explanation, is that mushy stuff, pudding, mud or dog shit?

As a quick explanation of how touch works with sight, think about every time we want to inspect something that someone else is holding we say, “Let me see that” where in reality we should say, “Let me hold that” because in reality that is what we actually wish to do.

Videos and movies have also incorporated ‘Audio Descriptive Service’ where every detail of the movie, from the background to the color of clothing is described as the movie plays.

There are more but the core is that pictures are worth a thousand words whether you are sighted or not, the difference being how they are relayed.

– SP

Hidden Treasure

I believe we have all heard stories of buried treasure and the treasure maps that would lead some lucky soul to that obscure location that had until now, been beyond reach, beyond sight.

Maybe it was pirates hiding their ill-gotten booty on some deserted island in the middle of the ocean, where you would first have to locate the island and then follow the detailed map that the pirate captain drew on some parchment and tied with a jute string.

Ten paces to the tree that leans left, follow the direction of the largest palm frond 20 paces till you see a black rock, on the rock will be a small scratch that will define the next direction which leads you 45 paces to a second palm tree with roots that protrude through the sand.

Locate the third root to the left of the north face of the tree and “X” marks the spot. I’m sure we can all visualize the wooden chest that is ensconced in the depths of the sand that once lifted from its tomb we find is adorned with brass hinges and a lock with the obligatory, what is known as an antique circle and square opening that will only open for the skeleton key, which always goes with pirates.

Inside you find gold, silver, and jewels beyond imagination, that have been hidden from sight for nigh on a thousand years.

Or maybe you were a western fan and listened to yarns spun around the fire of a mine or cache of treasure that a woe-begotten miner or cow puncher hid from all the would-be thieves and murders that have malice in their hearts and greed in their minds.

Scratched on the back of a random and nondescript piece of rawhide are random almost poetic thoughts, but when placed in the right order leads the cowboy back 20 miles to a baldy mountain with a rock slide on the south slope; traveling south towards that slide a half a mile you will find a spot where the conifer trees reach all the way to heaven.

A rocky outcropping lies 150 yards southeast, where a mountain stream flows to the west side leading to a meadow that reminds you of the woods back home, 250 paces northwest leads you to the largest tree which has a den or hutch from some animal that has long since abandoned it.

Tucked deep in that hutch on the far right side is a sack of misappropriated gold and bills from a heisted stage or bank, tucked away for a later time when the use of these gains will not raise suspicion as to its origin.

To this day there are movies, television shows and even reality shows that center around the hidden treasures that may or may not be buried, hidden or otherwise entombed somewhere on this planet.

These stories have always been a part of our culture and belief system. I’m sure that some of these stories and locations are true. I too believe that there are locations of hidden treasures and artifacts that may be stumbled upon by some unsuspecting traveler, or possibly even by some historical professor with what is believed to be the official map.

For me it’s not the treasure that is the important part in this scenario, it’s the map. The treasure is like everything for me, “out of sight.” And it’s the map that gets me from place to place.

We all live by these maps, it's just that they are not relied on as much by the sighted. Those of you with vision use that to navigate the world as we know it, however, as you do, those treasure maps are being created and stored away.

To demonstrate my point close your eyes and imagine a room in your house – preferably one that you are not currently in, and describe the room including colors furniture and other decor or accents that may be in that room.

You could also describe a scene out one of your windows. Garden, trees along with any other yard decor you may have added along the way.

There’s your map —

I would also be willing to bet that if you closed your eyes, you could navigate that room or yard — maybe slowly, maybe hesitantly but I bet you could. Believe it or not, you have unconsciously counted steps and measured distances your entire life.

Without vision, I now have to do it consciously. Everything is a treasure map and arriving at whatever destination is the treasure. 

— Wake, three paces to the end of the bed, turn left, 6 paces to the door, turn right 3 paces down the hall to the bathroom, turn right 4 paces to the toilet, on the left. —

I like to imagine the famed treasure map that is in every movie and story; brown background to represent ground, black dotted lines for the path, blue to represent the water in the toilet and numbers beside each of the dotted pathways to represent steps.

(Of course, there’s a large “X” written in the "antique pirate script"  or possibly even crossed swords, over the toilet bowl.)

People wonder how I get around so well – it’s the treasure maps. I count every step and I draw maps in my head that both represent what I remember from my days of vision and what I have learned since losing it.

Arriving safely at any destination is the treasure, whether it’s the bathroom or the grocery store, navigating the living room or a downtown street; all of those maps have a hidden place in my mind, rolled up neatly and cashed away where you will need a separate treasure map to find.

– SP

Characters With Disabilities

I’ve had a rough morning and I’m a little riled up so here’s my two cents. Repeat: my two cents. I do not claim to speak for or represent the beliefs of everyone with a disability. However, from my experience with others [with disabilities] most would probably feel the same way.

My wife and I settled down to watch a movie the other night – I covered watching movies and how it’s easier at home in a prior blog. It was really a good movie but it kind of pissed me off.

In this movie, it was strongly inferred that if you didn’t have vision or if you were disabled in any other ways, you were obsolete and probably very alone or dead in the very near future. 

You will probably figure out the title by my rant but I’m not going to mention it here but everyone in this futuristic world lives within a virtual reality state because the world has fallen into ruin and that is the best escape that mankind has come up with.

(Side note, I believe that storyline is a vision of our future. Video games have ruined life and the world as we know it. [People] would rather play a game and live in a virtual world than real life. Again, this is my two cents and that’s a separate rant.)

The issue is ‘what about people with disabilities?’ I have reviewed the book that this movie is based on and in some inexplicable way the author lives in some rare location on this planet that there are no disabilities.

This is the only explanation I can come up with based on the fact that the book NEVER references anyone with a disability.

Did they cure all disabilities in the future? Did they just kill us all off because we weren’t able to add to their new virtual world? Or was it, they spent so much time in their perfect world that they totally just forgot about us and we died off naturally because we had to fend for ourselves in the real world that no longer exists.

I guess in this writer’s world we'd be better off dead because it interferes with his futuristic life and the utopian world that he created in his novel.

I don’t understand how this could be overlooked! I’m not just talking about the blind but what about the severely disabled that rely on others for food, medications and other care? What about individual’s that are paralyzed or otherwise physically unable to play the game?

I can’t believe I’m saying this but here we are – “Fuck it! They just need to die off because they have no use in the real world of gaming!”

I am by no means a fiction writer nor do I have the misconception that I have all the answers to fiction novels but...

INCLUDE CHARACTERS WITH DISABILITIES!!! 

No, not “disabled characters”, put your character before their disability but include it nonetheless. People with disabilities exist in real life, out in the world, living and breathing and going about their days in the same spaces as non-disabled people. (Scary stuff, huh kids.)

If you want realism, include characters with disabilities. We’re all around you. I guarantee you know several people with disabilities even if you don’t think of them that way.

I know that there are many times that people have said to me that they forget that I’m disabled because I do so well amongst the non-disabled. I work very hard at fitting in but that doesn’t mean I want to be totally forgotten and left out.

“But a disabled person can’t be a Soldier/Mercenary/Other Badass fighty character!”

If you’re only aware of 'physical disabilities' that completely limit a person’s mobility, you’re not aware of the diversity of disabilities or the mobility aid options and it’s time to do some research.

Peg-leg, bionic eyes, an arm made of gears and pneumatics, I would even accept going as far as magic potions or holistic treatments. Add someone who has a disability but is in remission, after all, it is the future and none of us really know what is in store.

Get. Creative! These people exist and function in the same spaces as your perfectly able-bodied soldiers/mercenaries/various other badasses.

Let’s say, for whatever reason, your hero must be completely physically and mentally "abled." Do you not have medics? Blacksmiths? Ammunition and weapons experts/providers?

What about family members back home that your badass fights for and returns to once a month? What about the bar/tavern/club/restaurant/dining tent your badass regularly visits – are there no servers or cooks or bartenders that they talk to?

Hell, don't you think it’d be fun, and beyond handy, to have a healer who happens to be paralyzed from the waist down in your crew? One who’s constantly cracking jokes about their own condition? Sure they may not fight because your fighters are only perfectly-abled, but damn are they good at the fixing shit up after.

It also doesn’t have to be a sob story or focused on the poor disabled person. People with disabilities can be ridiculous and funny and fun in general and it doesn’t always revolve around their condition.

They will make jokes about their condition and, given the right people, can be joked with about it. “The right people” varies person to person, but I find for the most part it’s close friends and family members who act as strong support and will also joke about things outside of the person’s disability.

For this, you may want to talk to “real life” (Oh my God, They exist?) people with disabilities; seriously, we’re everywhere.

Again, I can’t speak for all of us but I believe many of us would be happy to tell you if a joke/situation is offensive even within the context of goofing around with a friend.

Hell, I even believe that some of us, myself included, would be willing to answer questions from a total stranger if it’s in the name of providing education and support of people with a disability. 

You don’t have to make the story revolve around your disabled character. It’s like, with all characters it happens occasionally and within context. It’s not hard to throw in the realities of living with a disability every few chapters, or whenever relevant.

Lastly, the topic of using the word(s) “disabled/disability” and naming a diagnosis for me isn’t really a big thing. I can understand how it is for some people, but I am very secure in the fact that I am disabled. 

I have accepted it and after all, I am in charge of my feelings. If I let something as simple as a word upset me then it’s my fault, not the writer/person using that word.

If you make it clear that your character has a disability, show the symptoms and the ways in which they cope/manage/adjust to carrying on with their lives, show their ups and downs and condition management, that’s enough for me.

This might be the area that you upset and offend some people. Some might get mad that you used the word ‘disabled’, some might get mad that you didn’t. Some might get upset that you ‘made up’ your own condition; some might get upset that you named a diagnosis and didn’t portray it in a way they felt was accurate. Unfortunately, this is reality and you just can’t please everyone. 

The best advice I can give is, do your research. Do your best to be sensitive and make an informed decision. Ultimately, I don’t think I’m alone in saying I’d rather see characters with unnamed disabilities portrayed in a positive way than not portrayed at all.

I guess I should take my own advice – You can’t please everyone.

        –SP

Crafts of the Unsighted

For as long as I can remember I have loved to work with my hands. The work I did was far from anything spectacular; for the most part, it was mediocre at best, but that didn’t slow me down. I still worked to build, maintain, and repair anything that I was able.

Things like woodworking, precision building, or anything artistic in nature was not my forte. I could put things together, but if any meticulousness, delicacy or gracefulness was needed I never have been and I’m still not your go-to guy.

Knowing more about my disorder and realizing just how far back it started I realize now why that is. The connection between my brain and my muscles doesn’t always fire properly and so my muscles, hands and sometimes limbs shake, and I sometimes have a hard time moving in precise or linear directions.

This also didn’t slow me down. I tried to build great projects that take a lot of skill but they always turned out — well, let’s say just enough to pass for whatever I was attempting to build.

Even tying flies, something I really enjoyed doing was a difficult task. The larger less complicated bugs I could recreate and they did a good job at catching fish.

The smaller more delicate flies were always something I could never perfect and I would end up with way more wasted material than finished flies.

Back in the day right after the extinction of the dinosaurs, motorized vehicles were introduced and I spent hours upon hours, days upon days, working on cars in an attempt to build the fastest car around. (Never came close but it was fun.)

This was something I could do because the tools were bulky and the work was fairly straight-forward. Yeah, I broke tools, and parts, some knuckles, a finger or two and ruined tons of clothes.

Sometimes I even misplaced parts or added them in the wrong place but eventually, it would get done. It might not run but it was together.

After losing my sight, I started looking (ha-ha, looking?) for things to occupy my time. For a while, I had a hard time thinking I could still do things with my hands when it seemed like everything I used to do involved sight and the ability to have a steady hand.

I wasn’t going to be defeated, so I started looking for things that would satisfy my need to work with my hands. I have found several things that my lack of motor skills and sight haven’t seemed to hinder my ability to accomplish.

One of the first things I learned is that even if my motor skills aren’t at the top of their game, given enough time, I can feel my way through just about anything.

Case in point — cutting the grass. It took me weeks to figure out the best way to accomplish this task without losing a limb, any of the dogs' limbs, or any other necessary accouterments but here I am, cutting my grass like a pro. (If I’m not, don’t tell me, I like the illusion.)

As long as I have time and enough dexterity to feel what I’m doing, I can accomplish tasks and revive that feeling of contentment. It all started with 550-paracord.

For anyone not familiar with paracord it is a nylon colored, sometimes multi-colored cord that is braided and knotted into bracelets, lanyards, leashes, and a plethora of other things. I started paracord bracelets when I was still sighted; making a few for friends and me, but that was about the extent.

After losing my sight, my drive to learn how to tie more complex patterns as well as broaden my scope of different products became a driving force in my sanity.

I learned that if I feel my way through the corded knots, I can achieve just about any pattern and length. The bracelets became more complex and I taught myself how to make leashes, lanyards, key fobs and any other construct that can be imagined with paracord.

There are also different sizes of paracord from 1/4 inch down to micro, which is about the size of a heavy sewing thread. I have learned to weave and sew different sizes together and have created some of my own patterns and designs.

I have even incorporated it into my world of sight by applying different patterns and designs on my walking canes.

When I was sighted I couldn't paint my deck and make it look respectable but now I have started painting glass cabochons. That’s a fancy way of saying glass eyeball jewelry.

I don’t mean like real human glass eyeballs, like, “Hey see this here glass eye that I got after that freak fishing accident? It was made by a blind guy.” Not!  Also, it's not a piece of glass jewelry that you would attach to your eye.

I know that having a bedazzled grill is all the rage right now but I would hate to start some new fad that causes great discomfort to the wearer by them trying to apply some sequins to their eyeball

It consists of applying different colors of fingernail polish to the back of a round polished glass bead. While the paint is wet you scratch it with several different sized sharp objects (everyone duck) then applying different colors over the scratches until it looks like an eyeball.

These creations are then attached to jewelry like necklaces and earrings. Granted, these are very unique pieces of jewelry and not everyone appreciates it, (only the nerdy, like me.)

The craziest thing is the lack of dexterity that I mentioned, (not being able to move in direct or precise ways), makes the eyes turn out more 3 dimensional and realistic.

The shakiness and lack of vision create a non-conformity in the lines which makes for a more realistic looking eye, go figure? It takes a blind guy to make realistic Fantasy / Dragon eyes, irony anyone?

This, like the paracord, is totally by feel and by the end my fingers are covered in more paint than the cabochon but somehow they turn out.

       One of the most difficult and time-consuming crafts that I have learned is glass and metal etching. Metal etching is done by a chemical-electrical process and the glass is done with acid.

Both of these are tricky when you have enough sight to see what is going on and there is always a danger of, well — burns, fire, explosions.

This took me a while to even try because of the whole burning to death thing but I conquered that fear as well. The other reason that this is one of the most time-consuming and difficult is the fact that a stencil must be cut and applied to the object being etched and that sometimes is very delicate work.

Not everything I attempt turns out but I am getting better and hell, not too many people can say they have a designed glass, etched plaque or personalized beer mug, made by a blind guy.

     

Moral of the story, you never know what you are capable of until you try. I have learned how to do things that keep me occupied and my mind sane, ha-ha-ha-ha-ha — aaannnnnd sorry that was funny.

I am nowhere near done with my exploration. Next, a lathe; we all know how well I handle sharp instruments.

                                        

—SP

If It Wasn’t for Bad Luck

“If it wasn’t for bad luck, I wouldn’t have any luck at all.” I heard this all too many times from my father growing up. Every time something would go wrong or he would miss out on an opportunity he would shake his head and repeat this very phrase with disgust.

My family has always said that it’s the Paulsen curse. If your last name is Paulsen you can guarantee that there will be random bad things that will happen and there’s nothing that you, being a Paulsen, can do about it.

Now, that I am an adult — shut up! — I hear myself repeating this with the same frequency and disgust that my father had. As I was going through my testing and diagnosis with my disorder, I repeated with regularity, “if there’s a one in a million chance of something happening or going wrong,. I will be the one.”

The odds of things going wrong or the chance of me catching the disease that is one in a quadrillion are unfathomable, but if there is a chance, oh, oh, oh, Pick Me! Pick Me! I would give anything to have these kinds of odds in Vegas. I would be a millionaire in minutes; I just need to bet against myself and watch the money roll in. But as the title says, if it wasn’t for bad luck… even in Vegas, knowing that my odds are huge that I can’t win, I’d still lose.

I watch with great despair as my son and his wife fall into the same rut of bad luck as I had my whole life. However, my daughter, who had the same trouble, has now acquired a new last name and her life drastically changed. Her husband teases relentlessly about the Paulsen curse and how he saved her from a life of constant sorrow.

So as a new testament of the disaster that is my life, I was once again reminded of that all too familiar phrase. I visited my doctor for my annual testing and follow-up on my disease.

This year, however, I also needed to have allergy testing done. I have lived for 45 years of my life with only mild allergies and very infrequently at that.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

Recently, I have become severely allergic to foods and other various inhalants — I huff paint in my spare time — actually like pollen and molds.

In this process, I developed some chronic sinus issues and was having difficulty breathing. I visited a specialist and was informed that because of the harshness of the sinus issues, I had developed a “horrendous staph infection” (Doctors own words) that would require surgery to alleviate the issues.

The surgery has been done millions of times and the surgeon doing my surgery has performed more than either of us wish to count. It’s routine, safe and effective.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

After the surgery, I felt much better and believed that things were looking up — NOPE! The odds of the infection spreading and becoming worse after the surgery are so minuscule that no one has an accurate number.

My surgeon told me that in his 20 plus years of doing this surgery he has NEVER, let me repeat that, NEVER seen anything go awry, there has always been a complete recovery and in most cases two to three days.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

Two days later I was in the hospital with a complete systemic infection. A one in a butt-load chance that the infection would spread throughout my body, but like ‘The Price is Right,’ “Shawn Paulsen, come on down. You are the next contestant on if it can go wrong it will be you.”

 After I.V. antibiotics and hours in the hospital, I returned to the surgeon's office. The decision was made to repeat the surgery only this time, instead of just manipulating the tissue and bone, he will be removing the tissue and bone to open the drainage passages and allowing the infection to escape.

  Once again I was assured that this is a surgery that has been done millions of times and although it is more invasive it is more likely to work.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

Knowing that this was necessary to rid my body of the infection I agreed to the second surgery. After scheduling and prepping for the relief that this would give me, we learn that my insurance will not cover the anesthesia necessary for the surgery. 

(Don’t get me started)

So I am going to have bone and tissue removed from my face and no anesthetic. Good times! Scratch that one off the bucket list. Yup, I had the surgery without any anesthetic; In fact, I had the surgery twice because you guessed it, the first time didn’t work.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

After the second surgery didn’t work I was given the strongest antibiotic known to man, the one that is saved for things like meningitis and MRSA. The kind that they say you can only have 4 grams of because it will kill every bacteria in your body and some of them you need.

4 grams later and two days wait to see if it was effective I was back in the surgeon's office with the same systemic infection. Nope, that didn’t work, so third surgery here I come; the same removal of bone and tissue, same response from the insurance and same surgery without anesthesia.

In total it took 4 surgeries and 6 rounds of antibiotics to finally stop the infection. In the turmoil, my doctor decided that it would be best to find out what I am allergic to so that we could keep this from occurring again in the future.

“If it wasn’t for bad luck, I wouldn’t have any luck at all.”

Who in the hell is allergic to the testing process that is used to test for allergies? "I'll take one in a million chances for $1000 Alex." Buzz, "Who is Shawn Paulsen?" The first test that is administered is testing the carrier or allergen suspension that is injected into your skin.

90 seconds after the skin prick it had swollen to over double the original size. It usually needs to sit for 10 min and then looked at, 90 seconds, yes, 90 seconds and results were clear.      

No one is allergic to the allergy test. It’s a one in a tri-billion-dillion-schmillion chance that anyone would be allergic to the testing and Tra-la-la, like school, hand raised snapping my fingers so that I can for sure get its attention; I’m the one.

“If it wasn’t for bad luck…” Stop, just Stop.

I realize that curses and bad luck only exist in the minds of those who believe such things. I was convinced that I was a magnet for fecal matter and Darwin’s favorite social experiment, but in reality, it falls back on how you look at life and the cards that you are dealt.

All of the things that I could look at as bad luck or a curse; my disorder, infections, surgeries without anesthetic - the list goes on and on, and on and — ok you get it. All of those things have made me the person that I am today.

I realize that there are two sides to a coin and we have two ways of looking at life. I honestly don’t believe that it’s bad luck or a curse. I believe that its life, and honestly it makes it exciting never knowing what is next.

—SP