Christopher Dior Simon's Blog, page 19

For such a time as this

I also enjoy the time to myself. I like the peacefulness and ability to follow my agenda with no interruptions.

Jennifer will visit me today and bring me some banana nut bread. I’m enjoying seeing her again. She is working on our taxes paperwork.

My room is almost completely finished. Maybe I will be done by next week. I bought a door closer and will have it installed on Friday. My planter stand is still stuck in the port. I hope that includes customs. It looks like two of my tomato plants did not survive. I’ll buy more. I’ll also get some herbs.

Yesterday, I had a good dental appointment with my Mobile Dentist. He is punctual, humorous, efficient, and convenient. While he was in my room, I directed his attention to my bulletin board and four books that Miracle Man mounted book holders on. I told him that I would like him to buy my four books. He bought them. Though this was nice, it was not the best part of my appointment for teeth cleaning and tooth patching. I had the music he likes playing, and I began typing messages using my eyes and told him what I was able to do using my eye gaze technology.

He ends up having an aunt who is in a similar situation as me but by a different disease. That’s when Grace went into overdrive. His love for his aunt and my experiences and empathy meshed. I helped direct my dentist to my eye gaze technology provider and offered a second provider for comparison. I contacted the technical support and company representative, and now this family is on the way to their family member’s independence regained to some lovely level. Treasure your relationships, not your possessions. Anthony J. D’Angelo. Not life, but good life, is to be chiefly valued. Socrates. Great minds have purposes; others have wishes. Washington Irving.

I’m diagnosed with ALS. I am able to accomplish what my mind conceives differently. I love my life, and I am thankful and pleased to use my experience to assist others on this journey. Simplysaidbysimon get on with living the good life as ALS – Achieving Lasting Superstar.

A good routine

Good Willingly Working Without Worry Wednesday to you. I’m thankful for God’s good gifts of abundance.

I’m engaged in my usual routine. This morning, I will finish listening to Ruth Chou Simons’ book When Strivings Cease. I just finished my trachea care and replacement of the G-tube. Everything is quite routinely done. I replace the trachea every six weeks. My G-tube is replaced after three months or sooner if needed. I have therapy for my arms and legs three times a week. I scheduled my medication for what makes sense. I take baby aspirin, a multivitamin, thyroid medicine, potassium, and Miralax. I have my protein drinks twice daily.

Miracle Man will move some pictures around and maybe consolidate the curtains by color. I’m hoping my planter stand will clear customs soon and be delivered so I can finish up with the room, for the most part.

I’m finishing my next book for publication this month, and the sixth book has already started. If you benefit from my writing, I appreciate your word of mouth. The voice-over artist is making progress with the production of the audiobook format.

Don’t count the days make the days count. Mohammad Ali. Who has a harder fight than he who is striving to overcome himself. Thomas a Kempis. Out difficulties grow miracles. Jean de la Bruyere. Simplysaidbysimon and Nike, Just do it. You can with ALS – Appreciating Life’s Show. Thanks, Jilliane.

Blueberry bush

My best friend visited me last week, but he and his wife stopped at my house first. While he was there, his love and kindness responded to my request to buy and bring with him a blueberry bush blessing. He had a stiff neck. However, he didn’t allow that to prevent his love in action.

I have seen his love for many years. We began our acquaintance in grade school with a kick-fight. I remember that he used his foot like a downward jab with the sole of his shoe. We have been friends from that year until now. When my condition deteriorated to the point that I couldn’t care for myself, he became my earth angel. We went on several trips together, usually after we attended a men’s retreat.

We drove to the Grand Canyon, Zion National Park, Crater Lake, Redwood Forest, etc. Lamonte put up with my bad jokes and singing. When we went to Las Vegas, he introduced me to Barbara, who became my 85-year-old friend and editor. While at Charles Mountain on one trip, I bought her an angel. She had fed me while we were in a buffet in Vegas.

Disabilities don’t stop us. They may reveal fake friends and expose our earth angels. I’m fortunate to have Lamonte and his wife, Phyllis, in my life. They are friends I can count on. Perfection is attained by slow degrees; it requires the hand of time. Voltaire. The future belongs to those who believe in the beauty of their dreams. Eleanor Roosevelt. Sincerity is the way to heaven. Mencius. Simplysaidbysimon good friends are priceless, and it takes one to know one, so be one with ALS – Always Loving Sunshine. Thanks, Belinda.

What’s wrong?

I’m of the mindset that if everything is stressful and I stay overwhelmed, then something has got to change. If I need to move, then I need to pack up and hit the road. If the problem is some person? That is simple, they have to go. If the problem is me and I can’t escape me, because everywhere I go, there I be. Viktor Frankl gives a solution. When we are no longer able to change a situation, we are challenged to change ourselves. Viktor Frankl.

Seriously, life is doable. If we’re always in the dumps, possibly it’s time to change something. At least, that is my rational thought process for having twelve curtains and myriads of artificial and live flower arrangements. I keep my life fresh. I’m having zucchini bread this week and banana nut bread next week. Thanks to Lisa, Jennifer, and Phyllis, I have something to look forward to every month.

Before I go further, the blinds I bought last year and had several obstacles are now working. Miracle Man fixed my blinds. I’ll try to get the technical support to program my tablet tomorrow. Glory. Another treat to control letting the sunlight in when and as much as I desire. Sunlight, I am told, helps protect against depression.

I’m loving my life and striving to have and enjoy more of it. Simplysaidbysimon let the sunshine in. I think some old singing group also sang those words. ALS – A Loving Smile. Thanks, Jilliane.

What’s your location?

Ah, location, location, location. Where are our thoughts? What and where we focus will help us through some difficult moments here and there and, to a large extent, usher us into eternity.

I appreciate each of you who expressed concern over my care last night. I’m doing fine. I will not likely let 45-55 minutes orchestrate how I am doing. Yes, I get frustrated that here we go again. However, my focus is on the good after I move past the irritation. Happily, I think, at least it was not five hours.

Where are my thoughts located when I am faced with a nonsensical scenario? They are on Park Avenue in a high-rise penthouse. Yes, it is expensive there, but it is worth it. I’m high enough to have a good perspective. I know that these aggravations are preparing me for the next hurdle.

Today has been a good day. I am listening to Blessed in the Darkness by Joel Osteen. My wife brought me some zucchini bread slices. She’s going to make some banana nut bread this week. I’m working on the process for publication of the fifth book, ALS: The Good, the Bad, and the Ugly – My ALS – Amazing Life Story.

I have not mentioned it, but I have started back to trying to breathe on my own off of the ventilator machine for ten minutes while I am receiving trachea and G-tube care. I don’t have a specific goal. I’ll just keep working on adding more minutes comfortably. They are all hard minutes right now. Nothing great in the world has ever been accomplished without passion. Georg Wilhelm Friedrich Hegel. Simplysaidbysimon park your thoughts in the right location and ALS – A Light Seen. Thanks, Gwen.

Why did you have to call the Director?

I’m very grateful. It has been a long time since I have had to lie in my urine for over thirty minutes. I’ll never be able to expunge that horrific day from my mind when I waited, praying through my hyperventilating episodes, urine, and defecation, and gaining control of my emotions and breathing.

Today, the CNA asked why I had to call the boss. I didn’t call until after thirty minutes of waiting for a clean-up. Afterward, my nurse asked me if I had had a rough day because I seemed frustrated. Duh. I’m trying not to be demeaning and still paint the picture.

I had an expressionless face with my teeth clenched. My pre-scripted message only read Wipe all the way up my right side to my chest level. Please. There were probably a lot of things, but my desire to be kind in every situation kept me from writing. What does the lady do? She’s wiping my chest. I know it was a full bladder of urine, but definitely not high-tide level. Then, after being uncomfortably pulled to the side to replace the sheets and clothing, the two CNAs figured out that the sheet was on the wrong way, and the pulling and turning uncomfortably moved process began again.

You seem frustrated, did you have a rough day? No, lady, the earlier team was only half as bad as yours, and they typically respond in 2-4 minutes. These were my censured thoughts. Once again, I got a pop quiz, and I passed by the grace of God. He has added more grace as the cluelessness increases. Whoops, I did it again. I let my thoughts out. Damned I would be, except I get more practice than one patient should be allowed to experience. Simplysaidbysimon gets a grip on his urine-saturated clothes and sheets. You lived through another day. I can’t wait to see what tomorrow brings while living with ALS – A Lasting Smile.

It’s going well

I have made progress since I communicated with the first publisher. I have published four books on KDP in January and will publish one more book this month, and one in July. I already have an audio voice-over artist and signed an agreement for ten books. I love the man.

I am exhilarated about our sample of the sixth book. I will depart from my devotional memoir style and use an essay mode to reveal the dread and delight of having a first child. I’ll examine the differences in maturing love.

I am seeking a collaborative publishing team to bring marketing and distribution expertise to my work. After they review my published books, I would like a royalties advance to cover the production cost for ten audiobooks. Three of them are already in different stages of production, and I have samples of the first three.

Unfortunately, it is appearing to me that many publishers are making their money in the exploitation of the perspective author’s dreams to be published and have success with their work. It seems like the fees being charged are the revenue producing means for these businesses, and not the marketing and distribution of the author’s books. It’s just a feeling.

My sense of things is that if these publishers can do what they’re pontificating, they would bank on their expertise and the author’s demonstrated abilities in his or her manuscript or published books. I’m thinking about electronic messages here, but it looks to me as though something is sounding like political rhetoric. Just sign a contract, pay us, and we will see what shakes out. Not this author. Not yet, anyway. I’m learning fast.

I’m not pimping your dreams and definitely not selling swamp land. You can be what is in your heart, and you can do what your determination dictates. Disability has been disabled, and you are able to soar above your challenges and feelings of being less than what you used to be. I’m talking to the real you and not the window dressing of a body.

Don’t grieve. Anything you lose comes round in another form. Rumi. The only person you are destined to become is the person you decide to be. Ralph Waldo Emerson. I attribute my success to this – I never gave or took any excuse. Florence Nightingale. Put your heart, mind, and soul into even your smallest acts. This is the key to success. Swami Sivananda. Success seems to be largely a matter of hanging on after others have let go. William Feather. Simplysaidbysimon, give yourself a chance with the new you. Or is it the old you in a new way because ALS – All Life’s Sacred. Thanks, William.

Technology

I do love eye gaze technology. It’s the door to our connection with the rest of the world. Also, we’re able to retain or regain our independence on some level.

Well, my busy room is large enough. I have two reclining chairs, three floor pole lamps, a water dispenser with a refrigerator, a surround sound bar, three great speakers on the wall or top of the TV, a fan, heater, and air purifier that I also control, along with what I already mentioned. Oh yeah, and a seven-foot entry table that I have five flower pots on and four angels. I also have angels hanging below and sitting on top of the TV frame. Did I mention four wall lamps, and forty-one family and friends pictures on the walls, nine photos of the Grand Canyon, thirty-one angels, three crucifixes on top of the TV frame, five hanging planters, and electric window blinds with eleven curtain colors. Some colors are also in sheer. I’m hoping to have my planter stand next week for my indoor garden. So far, I have three tomato plants and some onions.

I’m ready for my Miracle Man to put the finishing touches on my room. I have a couple of deliveries left to accomplish this. I’m always looking forward to something. Staying engaged is important to our mental health. Having those we love and who love us is monumental. Also, having purposeful and meaningful activities is crucial for our wellness.

My religion is very simple. My religion is kindness. Dalai Lama. Treasure your relationships, not your possessions. Anthony J. D’Angelo. Simplysaidbysimon are the simple truths to live by. ALS – A Lovely Sermon. Thanks, Belinda.

What to Expect

One of my friends from college passed away earlier this week. She had been so concerned about my illness. We really don’t know who’s leaving here or when. I recognize that disease brings with it a host of issues.

When we are sick, the first thing we do is label it. So we need a more specific name to treat it. But then, the question is if it’s treatable. Can I be cured, and if not, is it terminal? If it’s terminal, how long can I expect to live?

This is where we MUST be careful. The word is expected. Please don’t let someone else shape your expectations and experience. Yes, there are norms and averages, but you’re far from a number. And, if you’re like me, you’re anything but ordinary. Smile. Really, you are unique, and if anything, expect to be different.

I heard the doctor say, in essence, go and get your house in order; you have 2-3 years to live. My wife and I checked our insurance and savings and compared notes to see what this all means. However, what I told our daughter crystallized it. I EXPECT to be here when you graduate from high school and college, get your first job and career, get married, and have your first child. I added, “In that order.” Fast forward to Kayla’s career in nursing, which is going well. Now, for the rest of the story, Lord…

Tantalizingly terrific and Thankful Thursday. Today, my testimony is that God brought me to this top-of-the-mountain experience. I’m blessed to have my books published and the audio version in production. He’s blessed me with family and friends like you. Though my diagnosis was 2-3 years, I am going on 15 years of experiencing this life. Praise God that He alone determines how long I will enjoy the blessings of having a meaningful and purposeful life. Simplysaidbysimon gives Jehovah praise because of ALS – A Loving Savior. Thanks to all of you who have given me this acronym. And for knowing Him, who to know is eternal life. Hallelujah. Excuse me, my slip is showing.

Good lessons to live by

Diseases, birth defects, catastrophic accidents, environmental impacts, etc., often leave us physically disfigured. Our lives sometimes dissolve into a Wizzard of Oz scene with the Wicked Witch’s exclamation, “I’m melting!” How are you holding up mentally?

Prolonged illness is a tough one. I thank God that we know Him and can find rest sometimes in the blessed assurance. But honestly, it’s no cakewalk with or without.
I’m pretty much used to living in this one room, and lying in the bed all of the time. I’m enjoying writing and touching bases with many folks in all of the conditions that I listed above that has us challenged. My ALS association puts me in a position to assist overwhelmed families.

Frankly, I take frequent breaks. I get away through meditation, reading a good book, listening to some good music, or I join Dorothy and Toedo following the yellow brick road of my dreams. Occasionally, I get a blast from my past during a visit with my old neighbors, college friends, or church members.

My best friend from grade school is coming tomorrow or Thursday, I think. If everything goes according to plan, he will plant a blueberry bush in my backyard yard a little bit from the grapevine I planted last year. Also, his lovely wife will bring some zucchini bread. My daughter that is tragic because she prefers her enchiladas. Smile.

Life is hard and then we die. Before the finish line, just love, Baby. Enjoy every excursion, whether it’s mental or physical. Let’s enjoy this emotional roller coaster ride. Come on and put your hands in the air like you just don’t care. Simplysaidbysimon “Wheeee”. ALS – And Love Sustains. Thanks, Janal.