Christopher Dior Simon's Blog, page 2

NFL preseason is here

Okay, I am really stretching it to try and get excited about practice games. I have what I prefer and there hasn’t been any of it sighted so far today. I’m thankful someone responded to my call light, but I won’t be taking in any fluid until late in the day. I’m thankful.

The book total for the year is 359 so far this year. I’m enjoying the variety I choose. The Olympics were a great choice for entertainment. I watched several highlights. I’ll get busy with a few more projects soon. Being disabled and bedridden sometimes takes a bit of creativity. Since I currently don’t have permission for the facility to feed me, food variety through my G tube is boring. I’m grateful that I don’t have to be hungry.

It’s a situation that I have maintained a hunger for life and a good life at that. It’s not always appealing, but I continue to make it the best life for me I have currently available. Problems are not the problem; coping is the problem. Virginia Satir. Simplysaidbysimon, keep living the best you’re able. ALS – Ain’t Lanquishing Simon. Thanks, Gwen.

It’s a wonderful world

I believe I have Louis Armstrong singing this song. I have learned to see blue skies even when it’s raining. Of course, I used to love playing in the rain. We had paved streets and concrete curves for water drainage. So, I’d stamp my feet in mostly clear water until my mom would look out of the kitchen window, and then came the dreaded, “Christopher, you come in here right now.”

I have made a collection of memories that I can call upon for a while of good times going down memory lane. It’s been a good life, and I have more good living to go. Disease is not the end of playing in the rain. In fact, I have made a raft like I used to play on near the dikes. Now, it’s storms off and on, but it’s still a wonderful world. I’m not allowing the external turmoil to upset my peace.

How about you? Are you getting better at controlling your thoughts and feelings? Be not simply good – be good for something. Henry David Thoreau. You cannot shake hands with a clinched fist. Indira Gandhi. Simplysaidbysimon, tiptoe through the garden of your mind. I’m growing flowers outside of my window. ALS – Alternative Living Strategy.

I’m doing fine

Vitals: 112/61, 66, 8/9/24. I’m doing just fine without intrusion. I’m sure there are other tests that assist in determining a person’s well-being. Hmm. Like do you have a good appetite, how do you sleep, do you have suicidal thoughts, do you tend to isolate yourself? I wake up hungry and horny. I sleep when I’m sleepy. Lately, I have had thoughts of murder. Just kidding. I would love to relocate some people above ground. Yes, there are people that I don’t relish spending my precious time with. Don’t fence me in.

Again, I woke up with gratitude, and optimism. I’m going through the rest of my life looking for opportunity to be and do more. Please, remember that we are all different and have different desires and abilities. If my posts cause you to throw up, I don’t mind you letting me know. Maybe we can market it for weight loss. Hmm.

I do enjoy humor and witty sarcasm. I won’t debate politics or religion. Everyone has their freedom of expression except in some groups that seem to tolerate every perspective except the J word. Nope, guess again; I don’t think it’s Jello.

I’m listening to the book Keep it Shut. Motives and manners, how and why we say something matters. The home is the chief school to human virtue. William Ellery Channing. Some of were runaways. Simplysaidbysimon, wherever you go and wherever you are, be the best you possible at that time. ALS – Always Looking Sweet. Thanks, Jilliane.

Flat-footed Friday

Flat-footed Friday, but not for long. “We put our hope in the Lord. He is our help and our shield. Let your unfailing love surround us, Lord, for our hope is in you alone.” Psalms 33:20, 22 NLT. I enjoyed my wife’s visit, and it was wonderful to have the privilege of eating orally scrambled eggs, salsa made with tomatoes from our backyard, two pieces of chocolate, and a cup of water with a straw.

I can put my big boy pants on figuratively and move past my disappointment with the medical profession’s lack of acumen concerning ALS and how it pertains to me, or I can waste my precious time with whatever… I choose the former. I choose life, light, liberty, and laughter.

It’s just that simple. I can reinterpret the ad nauseam of mismanaged care or flounder in depressing awareness that the monster has allies. I’m pushing on to the fresh air of new horizons of hope. I’ll pause and present my situation to people whose job it is to untangle the unfortunate situation of patients whose rights have been trampled on.

So, until my wife or someone else not belonging to the facility staff feeds me orally, I will focus on how I am still able to chew and swallow. I have enough sense not to need a test to figure out where it goes each time my butt is cleaned. Simplysaidbysimon, Let your smile be the treasure of someone’s day. ALS – Acumen Lacking Something. Only two things are infinite, the universe and human stupidity, and I’m not sure about the former. Albert Einstein.

I’m loving my life

I’m enjoying what I can while I can. The peripheral foolishness- I have to keep letting it go. Now someone wants me to take an additional test that I already said I was not open to going to the VA to take. I was told they wanted to see where my food was going when I ate. Duh. If I have had no issues with choking or breathing related to eating orally, let’s conclude that it’s going where it is supposed to.

My Example precludes my use of words to describe my feelings on this subject. Bedazzled no longer. I’m moving on from this medical care buffoonery. I am almost seventy, with the last fifteen years of ALS. Since they had no part in my longevity, I wish they would just disappear and let me call them when I need them. Hmm. In fifteen years, aside from dental cleaning and one bout with a urinary infection, I have stayed clear of the obstructions to my preference.

Oh well. It’s someone else who’s not listening. I’m now hearing what their words didn’t say. All I can kindly say is, “Duh.” Simplysaidbysimon, do what you do and keep your peace. ALS – Awesome Longtime Survivor.

Just an unnecessary irritation

Unfortunately, the people I deal with have no clue or understanding that inactivity can cause an ALS person to lose that function partially or entirely, dependent upon the duration. It is relatively easy for them to think, have no problem, and just start up again. Well, It’s not so simple, especially for someone late in the ALS cycle. The little bit of reading that our caregivers do doesn’t begin to tell our story. Sometimes, no amount of explanation can give adequate information on the actual experience. Ignorant and clueless, how else do you describe it?

We just stay in the fight for our basic human rights, trying to stay upbeat for the strength necessary to battle physical, emotional, and external obstacles on our journey. They think they know, but they don’t know. I understand better why some are overcome with sadness and just cry all the time. They are overwhelmed, feel hopeless, and are forgotten, but still, we fight on.

Challenging the meaning of life is the truest expression of the state of being human. Viktor E Frankl. Hope is being able to see that there is light despite all of the darkness. Desmond Tutu. Yes, you’ve gotta have heart. Simplysaidbysimon, I don’t know how long I can hold out, but I only have to focus on one day at a time. ALS – A Lifetime Soldier. Thanks, Jilliane.

Getting back to okay

I will take breathing and swallowing tests so I can resume being orally fed by the staff at the facility soon. Yes, some criteria. I have only been enjoying my food over six months. Who says that health practices have to follow common sense or good business practices? I’m just glad a new culture is going to develop with trained people who follow great health protocols. What did we do before? Um, if you can find some paperwork, you might have a clue.

I’m excited about this new direction. If you have read my posts for a year, you understand that some nonsensical stuff has happened.

Life is good and getting better. We first make our habits, and then our habits make us. John Dryden. We aim above the mark to hit the mark. Ralph Waldo Emerson. Be not simply good – be good for something. Henry David Thoreau. Simplysaidbysimon, good good is on the horizon. ALS – Always Learning Something. Thanks, Julie.

On your mark

I enjoyed watching some of the Olympics reruns last night and early this morning. I never came close to such athletic excellence. I’m happy about the experience that each of them enjoyed. It’s a lot of dedication and commitment.

Each of us is engaged in our own marathon and steeple chase. We have some long runs, hurdles, and obstacles along our path. Shucks, I think the Olympian has a lot easier event. Our preparation is forever changing because what we face can be different all over again in a few days. However difficult the challenge, if you can, stay in your race. We are all different and have different reasons for running. I don’t expect to keep up with you. I’m happy for your tenacity and achievements.

It does not matter how slowly you go so long as you do not stop. Confucius. We are all blessed in our own little way because we are special, special. Sing it Barney. Simplysaidbysimon, I am trying to stay out of the hole in the ground where the green grass grew all around, all around… ALS – At Least Smiling. Thanks, Jilliane.

It’s not convenient

I have an idea that growing old is not particularly fun. I’m guessing you’re not finding it very endearing also being sick while you’re aging. I’ve thought about it and I consider myself blessed and fortunate to be in the land of the living. Each time I see my wife and daughter’s smile, it’s a special party inside of me that warms my center of emotions. A friend is one who knows you and loves you just the same Elbert Hubbard. I believe that may be said about family.

Hey, friends and family are able to get a spark going in my life. I’m particular, if I am an after thought in your life, see me after life. Don’t fit me in after everything else.

I want please to have a life, but don’t leave me out of your life and Purpose that I am special to you. Some people have driven or flown to my part of the country and visited me. Some don’t stop by. Hmm.

It is understandable to have preferences and just so much time. Let’s just make our relationship a Christmas and Easter, or Super Bowl and March Madness kind of thing. This life is full of choices. Please understand that it’s all good when I am no longer excited about you.

What I am exhilarated about is how it is still possible to live an exciting and excellent life after we are sick and old. If we have a will we can usually find a way to and for what is important to us.

I’m into my fifteenth year with ALS. I know what works for me. I’m thankful and excited about the rest of my life. Simplysaidbysimon, live and let live. ALS – Astounding Loving Success. Thanks, Janal.

Why am I here?

Why am I here?

The facility provides 24/7 care nurses and CNAs. There are Physical, Occupational, Speech, Respiratory Therapists, Physicians, dietitians, Social workers, Cooks, housekeepers, Maintenance, Activities Managers, Directors of Nurses and assistants, and someone who coordinates supplies and groceries. You may also hire your own attendees for additional services and care if you like. Why am I here, you ask? I need to be, and I want my wife to have a life outside of caring for me.

There are things that happen and should not. However, there are so many instances of people who have gone beyond their job description to make my life easier. The areas that need attention are being addressed.

I am thankful that the VA gave me this opportunity and option. I would not want the burden of my care upon my wife. Bless those of you who have the temperament to care for your loved ones.

The caregiver’s life is hard and consuming, depending on whether you have any help. Everyone has a different situation. It is hard either way. I have a pretty good tolerance for the shortcomings of Healthcare. But I love what it affords me: not to be concerned with my family caring for me more than they do.

To find out what one is fitted to do, and to secure an opportunity to do it, is the key to happiness. John Dewey. Do what you can and be happy, Simplysaidbysimon. ALS- Awaiting Life Salvation. Thanks, Gwen.