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

Picture if you will

Picture if you will, a serene and uninhabited wooded location with a river or lake, surrounded by wildflowers and grasses, with a beautiful cabin sitting majestically next to the water. A large cache of wood piled neatly and precisely next to the cabin, as a small light gray thread of smoke trickles from the chimney.

        This is what many believe to be the perfect scene, myself included.  It is believed to be the epitome of perfection. I have always been an outdoorsy person – to say the least – and a cabin in the deep woods next to a lake and in the mist of the animals and growth that are common in these locations gives me tremendous joy.

        There have been many memes and other pictures on the internet showing this exact scene, with the phrase “Live here free for one year.” Then the second shoe drops – Bum, Bum, Bummmmm, sang in the common suspense building tone that we all know and love – “but without internet” or “without football” or even “without bacon.”

        Would you do it?

        As if there was even a need to contemplate this question. The “YES!” would have left my lips before the question was even finished. The only way to make this better would be letting me live out the remainder of my life here, no matter what the thing we supposedly can’t live without is.

        I understand that in this day and age there are many who would forget to breathe if they didn’t have their handheld multi-function device.  Without constant contact with all the social media sources and the ability to show everyone how their life is progressing through the photos that they so wholeheartedly believe that everyone wants to see, they would simply die.

        For some reason beyond my comprehension, if you don’t post photos on Snapchat, Facebook, or Instagram, you actually do not exist. It also stands to reason that if no one likes or views the pictures you so painstakingly uploaded, you don’t exist either.

        Therefore this location, in my humble opinion, the most beautiful place in the world cannot exist. The only possible explanation for this picture is Photoshop, because we all know there can be no place on earth that wouldn’t allow internet; otherwise, how did we get the picture, HUH? HUH?

It’s not like there are such things as cameras that are not attached to our handheld lifelines, nor are there ways to get pictures on the web that you would have to live without, therefore this place cannot exist.

        Then there are those of you who, once again, I just do not understand - live for professional sports. Football, Baseball, Hockey, Soccer or whatever the sport of the season is.

For some reason you sports fans believe it to be simple, “If I don’t watch and support ‘MY TEAM’ the world will just stop spinning. Without sports, my life just wouldn’t be worth living.”

I am at a bigger loss here than with the internet – face in their phone 24/7 junkies. Sports are great to play or even watch when your child or other family is playing but to just watch a bunch of strangers play a game that they are getting paid millions of dollars to play and who wouldn’t give a rat’s ass if you watch or not just makes zero sense.

Not only do people believe that their team belongs to them, they will defend these strangers to the extent of brawling over a team name or player. Most of these people will defend their ‘Team’ over their own children, mothers, or other family members. It is so important that parties and great gatherings are held to honor these complete strangers.

Again, the thought of living in a location where there ‘team’ could not be watched and their lifeblood nourished would be worse than any torture that has been thought up. Nature, what is nature? Is that the grass that my team plays on? In that case, I could live there.

I’ve said it before and I will say it again, professional sports are like gay porn; I know it exists, I know some men like it, but I don’t want to know about it.

Back to the picture that I asked you to imagine at the beginning of this blog; remove the cabin and replace it with a tent and that is pretty close to how I spent the last week.

Every June my family makes a trek to Yellowstone and we spend a week in the great outdoors in just such a tranquil location. We camp just outside the park where there is little to no contact with other people.

We gather around a campfire and tell stories and laugh all the while having no contact with the outside world. There’s no internet, television or phones, just us; and at the end of the week, we all realize how quickly the time went by and how much fun we had.

"WAIT, WHAT?!? THE HELL YOU SAY?"

There’s no way that you can have fun without watching sports or having access to the internet to show everyone just how much fun you are really having. Without pictures, it didn’t happen and your stories just don’t make any sense.

Trust me. Google primitive camping and there will be pages of information about this imaginary and frightening thing that is called the great outdoors.

This is the greatest existence that I can imagine. I only wish I was able to spend the remainder of my days here without any access to the outside world. I can live without ever accessing any social media, or even believing that sports exist.

Neither of these things make my life better; if it doesn’t make me smarter, wealthier, or healthier then it isn’t worth my time. I gain none of these through the internet or sports and let’s face it, in most cases these things actually make a person thoughtless, poor and unhealthy.

As far as bacon, now that’s just stupid we all know that we can’t live without bacon, I mean its bacon. So we all know this can’t be a real question.

—SP

Unconditional Love

“Let me tell you a secret about a father's love, a secret that my daddy said was just between us. He said daddies don't just love their children every now and then, it's a love without end, amen…”

Eeeerrrrrkkkkkkkk, wait, stop, back up. 

If you are unfamiliar with, ‘It’s a love without end…Amen’ by George Strait I highly recommend it. Even if you are not a country music fan, the lyrics are so heartfelt and really hit home for me. I would like to believe that my kids and grandkids would agree that I have shown them a love without end.

I have realized late in this life that children, grandchildren, and great-grandchildren are the greatest gifts that a person could ever receive.

When it comes to a love without end, I would really hope that I have shown my kids that there is nothing in life that I will not give up for them.

I wish I could say that this was passed down from father to son, just as the song says, but in my case, it just didn’t happen that way. I did learn about unconditional love and sacrifice, but it was my mom that taught me that very valuable lesson.

A father’s love may be a love without end, however, a mother’s love is unconditional and in the case of my mom, seemingly limitless.

Like most things in my life, I grew up a stubborn — well — asshole. But no matter how much turmoil or the numerous trials that I put my mother through, she was always there for me, stood by me and at times even carried me. I wish that, as I was growing up, I would have seen her for what she was and the hard work and dedication she had for her family.

Like I said, I was an asshole and I really took everything for granted. I mistook the love and care that my mother offered as “Her Duty” or “That was her job as a mother.”

I never realized how much she did for each of us until recently, when life dealt me a hand off the bottom of the deck. I was thinking that I was sitting pretty with three of a kind; instead, I faced a dealer with a stacked deck and a royal flush in his hand.

It’s amazing what a little hindsight and humility does for a person’s clarity. I am ashamed, nay, disgusted with myself in the way I acted and treated her throughout my life (especially my teenage years).

My mom always said ‘I would never live to see 13.’ She believed, as most people did that knew me, that my last words would be “well shit, that didn’t work,” as I plunged to my death in some ungodly manner that no one would believe could be accomplished by a human.

As I reflect on my life now, I would like to believe I can see all the love she gave to us, and the time she gave for us. Her sacrifices were beyond scope and I do not think I could ever do her justice in the way of a thank you, but I would be remiss if I didn’t give it my best try.

As I have stated before, I grew up in a family that was on the lower income scale, — Ok we were poor. My father, as hard as he worked, didn’t bring home enough to support me and my 5 sisters. (Total estrogen overload.)

My mom always found a way to stretch the money and make sure we all had what we needed. I don’t remember a time that we were without a necessity. I remember many times I was without a want, but never a need.

The crazy thing is that somehow we even ended up with most of our wants. I never really understood how she did it and how she would come up the money or find the time to make sure that we had the best life we could. I wish I had some of her magic at times.

When I was in Jr. High — other than we had to chisel all of our homework on stone tablets — it was much like the kid's needs and wants of today. Fashion was and still is what makes or breaks a young person.

The fashion of the time — typical Stone Age, Fred Flintstone era clothing — was very expensive, and try as she might, she couldn’t afford to equip me to ‘fit in’ as the hip youngsters would say.

As most of you know, Jr. High and High School is a fashion show and the popular vote is whatever jocks and cheerleaders are wearing.

Now, the Star-Belly Sneetches had bellies with stars. The Plain-Belly Sneetches had none upon thars. But, because they had stars, all the Star-Belly Sneetches Would brag, "We're the best kind of Sneetch on the Beaches."  With their snoots in the air, they would sniff and they'd snort "We'll have nothing to do with the Plain-Belly sort!"

—Dr. Seuss

However, mom wasn’t content to just leave me out in the cold and ruthless desert of childhood ridicule. She found a pattern at the local fabric shop and the correct denim fabric and set out to make me a pair of those most coveted pants.

After many painstaking hours, I had the same type of “needed” jeans that everyone in my school was wearing. The only difference was mine was missing the tag that proudly displayed the brand, but no one seemed to notice.

My mom made sure that nothing would interfere with her desire to give her children what they needed, even if that need was only a want. She spent hours of love, tears and I’m sure some blood to make sure that my clothes were as close to the real thing as possible.

“My coat of many colors that my momma made for me; made only from rags but I wore it so proudly. Although we had no money, I was rich as I could be; in my coat of many colors, my momma made for me.

My coat of many colors was worth more than all their clothes.”

—Dolly Pardon

As I walked around the school, I felt like the words of this song. I felt just like all the other students that had the spiffy new clothes that made them feel superior to the others who were not able to afford them. (Damn Sneetches.)

There is no greater gift in life than that of being a parent. My mom was the epitome of that statement. I now realize how much love and care she put into making sure we were happy and treated like everyone else.

I wish that I would have realized it when I was dressed in my handmade jeans and shirt, feeling like I was one of the popular kids.

Thank you mom; for all the ways you love me.

—SP

Reflections

         When people hit a certain age they tend to reflect on their lives and the things that they remember most in hopes that it may influence and inspire others. Now that I have made it to the half-century mark, I would like to share with you the things that I remember that may be helpful, possibly funny or at least inspiring.

Life is a humorous thing. When we are younger we believe we know everything and don’t want to hear advice or get help from those we consider older; their thoughts and ideas outdated.

It is said that if we do not study history we are destined to repeat it, and this is a perfect example. The older generations are the most valuable asset we have. They have lived through all of those things that in our youth we consider new and exciting.

When we get hurt, disappointed or let down it usually comes back to someone older and wiser that, if we had listened, could have saved us that outcome.

Now that I consider myself elderly, I have some advice that —if you are willing to open your heart and mind — may just save you that heartache and embarrassment.

        I will admit that my memory isn’t what it used to be and I have trouble remembering to tie my own shoes. In fact, at my age one of the greatest feelings in the world is walking into a room and remembering what I went in there for. (Full disclosure, the only room I can do that, is the bathroom), but I will give it my best shot.

        Number 1—

Ummmmmmm…

Well………..

Yeah………….......

Let’s see………...................

Okay………...........................

I hope this has been as helpful and inspiring for you as it was for me. 50 years of... 
Wait, why am I in the garage? Oh well, it will come to me, eventually.

I think I have to pee.

        —SP

Luckiest Man Alive

The past few weeks I have been reminded how lucky I am. I have a debilitating illness that eventually will end my life, I suffer through days on end of pain and weakness, my diet is so screwed up that most days I don’t know what to eat to keep from exacerbating the issues, I’m mostly blind and forget everything, but overall, I am one of the luckiest people on the planet.

It’s easy for me to say this because I get reminded over and over by the smallest things. In the past month, I have had the privilege of attending several performances that remind me just how special and great life is.

When I was young my sisters and I didn’t get the opportunity to participate in things like baseball, football gymnastics or dance. Although I really wanted to dance and my sisters loved football.

It wasn’t for a lack of desire on my part, or my parents for that matter; it was the plain and simple fact that my parents really didn’t have the money to support 6 kids in sports or other activities.

I do not place any blame on them, they did the best they could with what they had and to be honest, we really never went without the necessities; clothing, food, etc. — even if the clothing was homemade by my mom.

I look back now and although I was teased a lot for having homemade clothes, (that’s a topic for another blog,) I was very proud to be wearing something that my mom put all her love and time into so that we could afford the things that were needed.

 I played 2 or 3 years of baseball as a child and 1 year of soccer. I tried out for school sports, but even after making the teams, I shortly stopped and dropped them because the money just wasn’t there to pay for uniforms and other necessities for each sport.

Don’t misunderstand, my parents were behind me 100% and would have done anything to make sure that I was able to compete and play at the best level that I could, but I knew what a struggle it was for them so I stopped on my own accord.

I know that this created a misconception amongst my family, friends, and peers at school; believing that I was a quitter and wasn’t a reliable person.  I knew that it was best for my family that my parents didn’t have to worry about the expense that would be created.

I don’t have any heartache or other issues with this decision and period in my life. I had the fortune to be taken care of by someone whom to this day I still think of as a parent and love beyond words.

Even though I wasn’t able to play sports, I was involved in martial arts quite extensively. My sensei was a very loving and selfless person that understood my parent’s predicament and taught me for years without any compensation. He generously continued to teach and supply the necessary equipment for me to be able to attend the classes. (I was not the only student he did this for.)

Later, after I was promoted to a teaching level, I tried to repay him by teaching for free at his dojo, but he would have nothing to do with that. I was paid just like every other instructor and there wasn’t a discussion about it.

The love, compassion, and honorable nature that he showed me created a fire within me to emulate him to the best of my ability throughout my life. I have stated before in prior blogs about how friendships come and go and how certain people become a permanent part of your life, even if you don’t interact or see each other all the time.

I learned that there are people in this world that I would do anything for. The man who, for all of those years accepted me and looked beyond what everyone else saw, is at the top of that list. I would fight the fires of hell with a bucket of water for him.

When I became a parent, the struggles that my parents went through with me became all too familiar with my children as well. My wife and I struggled to make ends meet and take care of our little family. In doing this, we tried to be there for our children financially in any sport or dance or other endeavors that they may have wanted to try. Alas, in the end, the bills won the battle and my kids fell to the same fate as I did as a child.

I know that they understood as I did with my parents and they never complained that they didn’t get to do the things that the other children were doing. I tried to do my best to give them the experiences that I could, but now that they are adults I know that they feel like they missed out.

Now that I am a grandparent, I have tried to pay all of that forward. I am also very limited on funds because of my disability; however, I have vowed that my grandchildren will not suffer the same fate as I or my children.

In the past couple weeks, I have attended a gymnastics performance and dance recital by two of my grandchildren. I wasn’t able to see either of these, however, there I was sitting front row cheering them on and showing them that I don’t have to be able to see to know how well they are doing.

I want them to know that I will always support them in everything that they do. Both of my children are now in the same position that my parents and I were in; they are new families and it’s not always easy to pay the bills and give your children what they need and desire.

It’s my turn to be selfless and pass on the love and support that was given to me by my sensei. It’s hard for me to not sound braggadocios, but that is not the intent. I have learned and become very aware of how short and fragile life can be.

Money and bills will always be an issue and plague us the remainder of our days, but the experiences of those children are as short-lived as we are. I do not have the ability to teach them gymnastics or dance, but I do have the ability to make sure that they get the opportunity to learn from the people who can.

I am now able to give my grandchildren the experiences that weren’t afforded to me or my children and would be difficult for my children to provide for them as well. As soon as my other two get old enough to start in whatever extracurricular activities they desire, I will make sure that they also get the necessary assistance that they need.

I am so proud of my two little angles; Toe jam, and Armpit, as I affectionately call them. They have worked so hard and come so far in the short time that each has been studying their chosen activities.

I believe that this is how life is meant to be. My parents took care of my children as we worked to make ends meet and now it’s my turn to take care of my grandchildren.  I will continue to pay it forward and give them every opportunity that they deserve; and at every performance I’ll be there, sitting front row, cheering them on.

—SP

What You Don't See

Living with a disability is harder than you think. Most people watch others with disabilities and think to themselves — at least I know it’s what I thought when I saw someone with a disability, – “that must be so hard to deal with.”

        When you see a person missing a limb, in a wheelchair or blind, that feeling of misfortune and sympathy is sometimes so overwhelming that you can’t help but feel sorry for that person and what they have to go through.

        I believe it is human nature to feel as if that person has not been given a fair deal in life and in most cases we just want to help and make their life a little bit easier.

        For those of us who are disabled — well, I guess I can only speak for me, I have learned to adapt to a world that is designed for the healthy and non-disabled.

        I have in prior blogs talked about how I never thought of my show as something that was visual in nature until I was hired to do a show for the blind, or the difficulties of staying healthy in a world of athletes that haven’t had to adjust to anything other than their own diet and exercise regimen. Giving up that bread can be just too much to deal with.

        When faced with a disability, it opens a person’s eyes to the difficulties that exist in a world that is designed by people who have never had to deal with operating in an Out-Of-Order state of being. I know that it’s not right, but I sometimes feel as if I am ‘Out-Of-Order’; that some repairman has hung a sign on me until he can get around to fixing the problem.

You look and see the physical or external disability, but that is just the tip of the iceberg.

        I hear all the time how things are handicapped accessible or that they have accommodated to the disabled, but sometimes I feel like someone merely hung a sign on the bathroom door that reads ‘handicapped accessible’ and that was good enough.

        We are forced to be a part of a life that, although the belief is they are doing their best to comply with the disabled population, it’s sadly not even close.

Let me give you an idea of just one aspect of the problems that I encounter on a daily basis and it’s not what you would assume.

With my type of disability, I have several specialists that focus directly on my disorder and specialists in the other ancillary issues that I have developed, not to mention my primary care physicians and there isn’t a month that goes by that I don’t spend at least one day in one of the offices.

The first issue is that most have made the check-in process so much faster and easier — or so they believe.

When I would check in prior to these miraculous changes, the intake worker would confirm my name, age and insurance information and I would sign an agreement to be seen and bill insurance.

Now as I enter, I have to fill out and confirm my whole insurance and info fiasco on an iPad or tablet, because for a blind person, this is so much more efficient.

It was explained that it's faster, more well-organized and the system helps with the HIPAA laws, because no one standing in line can overhear the details of me or my visit. This means that there isn’t a speaking function on the tablet either.

I’ve tried reading braille on the screen of the tablet, but try as I might; it always feels like a smooth glass screen. That I am aware of, neither Apple nor Android have come up with a braille function for their tablets. (This actually wouldn’t work either, I can’t read braille.)

They have reassured me that this is the only way they can check me in because it is so private. Now I have someone reading the questions ‘out loud’, me answering them ‘out loud’ and often times repeated ‘out loud’. 

Conclusively, this is way better than before. I’m amazed that they still require this when they have my info on their computer from the 100 dozen times I’ve been in their office.

Here I am in a specialist’s office that deals with disabilities and no one thought of how we would be most accommodated. Not only the blind, but what about people in wheelchairs that can’t get to the bolted down pad on the counter; as a rule, patents in a doctor’s office cannot be trusted, so these things have the same bolt pattern as a one-ton Ford truck.

To add insult to injury, after struggling with the tablet, they hand me a clipboard with paperwork that must be filled out by the patient. This is the history and symptoms of my particular malfunction. Once again, I’ve been told this is necessary for the visit and I can’t be seen without it.

Hate to break it to you, but I can’t see with it.

Now, I have felt all over these papers and have even asked if they have them in braille and they just look at me like I’m some kind of anarchist. — That’s what I see in my head anyway.

This has never even crossed their mind let alone any other way of completing this paperwork for others with disabilities. There are hundreds of disabilities that may prevent a person from being able to fill out that paper, but the only answer I get is, “I’m sure there’s someone with you that can help you fill it out.”

Apparently, handicapped people cannot function by ourselves; there must be someone who assists us in everything so we can live like normal people.

So the Uber driver that volunteered to just hang out at the appointment and return me home when I was done, out of the kindness of his heart, was wishing his heart wasn’t so soft as I rattled off my medical history in full detail. This I’m sure is also HIPAA approved. 

After giving all my personal information to everyone in the room, and feeling like a 5th-grade classrooms goldfish where everyone watches you do your business, I’m allowed to see the doctor.

This is where the serious matters begin. As a bit of backstory, my disorder didn’t just leave me blind. I have heart, brain, digestive, and muscle issues, along with high cholesterol.

What the hell, I figured everyone at the doctor’s office knows, what’s a few hundred more? So much for HIPAA.

When I see my specialist for my disorder he is adamant that proper diet is imperative for me to have a fighting chance. My body doesn’t produce energy which means it also doesn’t process carbs and sugars.

These foods make me sluggish and cause seizures and stroke-like episodes so it is imperative that I stay away from them.

He wants me to eat high fats and protein and very little carbs. I follow a Keto-Diet by default so that my body will function as close to normal as possible — my normal anyway. Meat (all types), eggs, and bacon are the proteins and avocados, nuts, dairy – mostly cheese and certain oils are for my fat intake.

I must say it is working. I have not felt this good since being diagnosed. I am stronger, slimmer and overall in better shape than I have been in a long time. Not to mention I feel great, and can think without struggling to find words or stuttering, most of the time.

My gastroenterologist wants me to eat high fiber and little to no fats or red meats and to completely stay away from nuts and seeds or any fruits with small seeds. There goes the avocados, and nuts, red meat and bacon.

My primary care doctor is concerned about my high cholesterol so he wants me to eat very little meat and eggs and a lot of complex carbohydrates. There goes red meat, bacon, eggs, avocados, nuts, cheese, milk and creams, and on top of all that, I have to eat the very foods my body cannot process.

Finally, I have recently discovered that I am intolerant to dairy, avocados, certain artificial sweeteners and other foods on all three diets. (As long as I can keep my diet coke and coffee I will survive.)

All of this has been brought on as ancillary symptoms and issues of my disease. So the true meaning of living with disabilities is what is not seen by the greater population.

To be able to control my disorder I have to eat protein and fats with little carbs.

To control my diverticulitis I need to avoid meats, fats, and nuts and eat a lot of fiber foods.

To control my high cholesterol I need to avoid meats and fats, and eat many complex carbohydrates.

And finally, I have to do all of this while being allergic to half of the foods I’m supposed to eat.

How would you choose?

Would it be feeling healthy and having the energy to function and think while suffering from the digestive issues and high cholesterol as well as the allergy issues? Or control my digestive issues and have no energy throughout the day?

Without a doubt I need to stop the allergy foods because if I were to go into anaphylactic shock it wouldn’t really matter if I had energy or brain function.

As I sit in the specialist's office listening to everyone else list out their medical history — apparently, I’m not the only one who needs help with that damn tablet — I realize that I too am guilty of not seeing the struggles of others. It seems to be a never-ending cycle that many people with disabilities have to deal with.

–SP