Christopher Dior Simon's Blog, page 4

Thanks for the well wishes

A long time Facebook friend wishes for me that sanity will prevail. Further, she hopes that things might go back to how they were. I appreciate and understand the sentiment. However, my desire is for things to improve and get even better with new management.

I have experienced what was. The same person/people are typically in view of my difficulties, whether it’s Murphy’s Law personified, or they have an uncanny way of helping me. Please, don’t help me anymore. I am saying thanks, but no thanks. Your help tends to hurt. No more good intentions.

I’m done with forced medication, threats disguised as goodwill, coercion through family pressure, deceitfully administered medicine against my expressed will, etc. I have been through it all. Laughing, it was all for my good, what I could and couldn’t have. History is a vast early warning system. Norman Cousins.

I’m thankful, grateful, and appreciative sometimes because it is good for them, but always because it’s good for flourishing mental health, hope, and a fantastic peace that is not from this facility or Healthcare. Simplysaidbysimon, stay alive by any means necessary if it works for you. ALS—Another Life Saved. Thanks, Jilliane.

Was I ever in danger?

I’m reviewing what I could have done differently. I left one facility where there were markedly different skills. I could walk by my bedside with the help of the CNAs three times a day, and I ate orally. I moved to another facility so I could buy a home that was convenient for me to visit.

Upon arrival at my new facility, I found the CNAs unable to do what the previous facility staff could do. I can see now that I didn’t advocate for myself. I should have challenged the loss of services due primarily to the comfort level of the management and what might happen. I kid you not. I was told that California didn’t allow veterans to go to the VA Hospital unless in an ambulance. I should have challenged the widely known issue that many services were made available to veterans without ambulance transport.

I’m guilty of not advocating faster for myself when common sense and care are lacking. I kept believing it would get better, and it did. Of course, it took health officials from the state and company, but things improved.

Now, I am faced with what seems nonsensical to me but may make perfect sense to someone else: a patient can be given medical care orders without examination. ALS is stereotyped and profiled into a lump sum. Dagblasted, we are all different. We deserve individual and informed care. At least, in my case, ask if the patient has ever been at risk of choking. Not what could have happened, like when left unattended for five hours. Or how about the vital ventilator being left unplugged until the patient was alerted that the backup battery was engaged.

I’m rejoicing that I survived. No, not the fried green tomatoes, but I have outlasted poor management and unskilled and untrained staff. What have I learned? No one knows you like you. Advocate for you and others who may not have a voice. Guess what I will do? Nope, I will ask questions first. Something that was not afforded to me. I’ll let the seemingly broken system work. But I won’t wait so long. I’ll keep my thoughts positive, grateful, and happy. No one is always happy, but whenever those who bear gloom and doom come around, my brain will respond with “Uninvited.” I know my thoughts, I see their actions. Simplysaidbysimon, you judge who acted in good faith over the life entrusted to the? ALS – Always Loving Simon. Thanks to all of you who have said this. Govern your thoughts and have a happy life again.

It would be funny if not so common

I’m so glad to have command of my thoughts and to be put to good use. I’m going through my infrequent rounds with folks who are incredulous without common sense. Someone woke up and discovered that the care provided was inconsistent with the submitted paperwork. Say what, Simon? Not kidding. I’m now not to eat anything orally until it’s cleared up. Aside from not asking me anything, it’s the untimely awareness that I asked for two nurses to suction out some fried green tomatoes because I couldn’t move them over to chew them thoroughly. I’m sorry that I didn’t just request some water and wash it over.

What paperwork was set in motion? Well, it started with me getting tired of cooks not coming to work and having unskilled staff feeding me. I got the bright idea that I could increase my weight and give myself the option to use the feeding tube. It was so helpful that I used liquids primarily. I had the Dietitian get involved. I also asked the Speech Therapist to help give me exercises so I would not lose my ability to speak.

What ended up happening is that there was an order written contrary to what was said. Now, I am being restricted from eating orally because I had a great idea to circumvent the poor service. Oh yeah, let’s not leave out the fried green tomatoes, my helpful nurses, and the unhelpful Speech Therapist that I thought I was done with.

This brings me back to thoughts controlling our emotions, feelings, decisions, and actions. I’m not allowing someone to control my mental well-being and happiness. Whether the malpractice agents figure it out or not, I will keep living until they kill me, or I die of natural causes with ALS. ALS – Awesome Long Survivor. Thanks, Belinda.

That’s Heavy

I finished breathing on my own for 35 minutes this morning. I have a goal of one hour by September. Where is all of this coming from? I believe I can! I also figured that if I lowered my feet and raised my head, I would have less difficulty breathing. Nothing special; a little determination mixed with physics, and I am attacking my goals.

Yesterday, I mentioned that I read a phenomenal book by Richard Carlson that I believe to be the best succinct and comprehensive mental health book I’ve ever read. What is uncommon is that I began using something that I thought was common knowledge decades ago.

I used the basic information during my Crisis Text Line Counselor days that our brains are extremely powerful and able to overcome our problems when given the correct instructions. It all begins with our thoughts. Yes, and being alive helps. Smile. I’ll read the book again and write my Take a Ways. Faster than a speeding bullet, Simply Said By Simon, you can do some unbelievable things with your mind. You are a Superstar. ALS—Accelerated Life Sublime.

It’s up to you

I just finished the most comprehensive book concerning good mental health that I have yet to read. I have read two books by this author; they were grand slams. The first is Don’t Sweat the Small Stuff, and it’s all Small Stuff. The second is You Can Feel Good Again by Richard Carlson. He puts the keys to living a good life in the only person’s hands capable of pulling it off – yours.

I’m sorry if you thought I was going to point to Jesus, Buddha, Mohammad, the celestial makeup, a deck of Uno Cards, money, self-medication, or anything or anyone else. You are the big cheese and destiny, despot.

Simply said, more powerful than a locomotive… Stay tuned. ALS – A Lasting Soldier.

It’s worth it

I pay more, but he comes and does my work while I am in bed. Very convenient. I’m talking about and thankful for my Mobile Dentist. His convenient, jovial, and expert care is much appreciated. It’s the orchestration of necessary care and the abundance of my fulfillment of the other blessings of life that make it so much easier.

I have a deathly disease, as many of you are experiencing, and yet, somehow, it has become normalized. Much as those born with defects, were in an accident early in life, or have not ever known life any different, they keep on keeping on.

I’ll enjoy this day and everyone that I am fortunate to experience. I’ll try to fill each day with joy. Yoda says, Do or don’t do; there is no try.

I’m looking forward to my wife’s next visit and the goodies she will bring. The new DON is working on my last two devices, and Miracle Man will plant Petunias soon.

Who has it any better than me? I can’t think of anyone. Life is life, and making it good to the last drop is all of our business, Simplysaidbysimon. ALS – Always Living Spontaneous. Thanks, Belinda.

I have enough

My food that my precious wife brings me is delicious. Each week, Jennifer loads me up with the goodies that last me until I see her again. I have enough.

This also parallels my life. I’m diagnosed with ALS, but I have enough life to last me. It is my joyously spent experience to take one day at a time. I find enough life, energy, exploration, and wonder every morning. I love my life.

We don’t know how much longer we will live—none of us do. Let’s not try to figure out how many days we have left by counting them. Make every effort to enjoy your life and make every day count. Be not simply good—be good for something. Henry David Thoreau. Simplysaidbysimon, Adventures Leading Supremely. Thanks, Jillane.

A lot of good help

Truthfully, I have enjoyed plenty of good help during my almost eight years living in sub-acute facility care. Not only did I forge great relationships, but I grew an expansive flower garden and hung many pictures on the wall. One of my Therapists even constructed an exhaust vent for my private heating and air conditioner system.

Four years later, I’m in contact with several people and have new baby pictures, RN graduations, and a marriage coming up. Of course, there are poor performance issues in most industries, and healthcare is no exception.

Also, sometimes, through no fault of their own, not everyone is mentally aware and equipped for their job. Unfortunately, some Managers keep a head count to fill out their staff rather than getting skilled hires that contribute to workplace excellence. Good help is difficult to train and retain. Hmm. I have had eleven DONs. My first one and my current one are the full package.

There are two ways of spreading light: to be the candle or the mirror that reflects it. Edith Wharton. There is no influence like the influence of habit. Gilbert Parker. Nothing can be done except little by little. Charles Baudelaire. We are on the road to gradual improvement. Rough diamonds are sometimes mistaken for worthless pebbles. Thomas Browne. What would life be if we had no courage to attempt anything? Vincent Van Gogh. Simplysaidbysimon, wherever you are, make it a better place if only in your mind. ALS – A Limitless Spartan. Thanks, Janal.

It’s been a slow change

Healthcare is not a concern for most, but for those who have experienced being cared for by the insouciant—lighthearted, uncaring, nonchalant behavior—it will increase their vocabulary.

I have been told not to call the staff stupid or dumb. Well, if rolling my eyes and typing duh qualifies, then yes, I am guilty. I’m excited about the slow progress and the more good stuff to come.

I have not had any additional issues with being left unattended for five hours or one and a half hours left on the commode. I have far too many snags with not receiving a response to my call light until after ten to thirty minutes. How long does it take for a person to die from the lack of sufficient air? I won’t call it stupidity, but I will say incompetence fits.

I’m thankful for the new DON, who will slowly change the culture. We have had too much enabling. I typed the message that I would not debate what the nurse remembered. She then said, so you’re calling me stupid? My best defense is to go to sleep and hope for a better next shift.

Remember, when you can’t change the situation, just go to sleep. Ha ha. Actually, it reads: When we are no longer able to change a situation, we are challenged to change ourselves. Viktor Frankl. Some of your caregivers are outstanding. Bless you. Simply Said By Simon: I just want to thank you for letting me be. Smile. ALS—A Little Singing. Thanks, Denise.

Building your world

I’m going along building my new world. Like the fun of Leggo Land, I have discovered a whole new world since my legs have gone. It is fascinating to explore the wheelchair, therapy, walking aids, and lifts.

Fascinating? I try to stay away from thoughts of depression, debilitation, despair, distraught, debased, and every despondent possibility of disease. I’m definitely not allowing thoughts of death to permeate my mind, with few exceptions.

One of the first things I did after receiving my diagnosis of ALS was to review my life insurance. It’s a sickening experience to realize that there is not enough money for the family plans to be fulfilled. Even though we were living in our dream home and our daughter would finish her education in mostly private schools, everything could possibly change with my death.

Some changes are financial, but the family has emotional hurdles to overcome whenever dealing with death. My suggestion is to have a prolonged life when possible. There are different choices; everyone is different and handles disease differently. I’m just reviewing how my world changed with the loss of my legs, arms, and finger’s abilities to function. I have built a new world that is doable for me. Disability and disease aren’t the end. They initiated a new world for us that we continue exploring and going on exciting adventures.

Progress was all right. Only it went on too long. James Thurber. Independence is happiness. Susan B. Anthony. Faith is the bird that feels the light when the dawn is still dark. Rabindranath Tagore. Simplysaidbysimon, keep singing with the birds. ALS – Another Lesson Learned. Thanks, Belinda.