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we know everything and don’t want to hear advice or get help from those we consider older; their thoughts and ideas outdated.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