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
No comments:
Post a Comment