Hello to Angela's dear friends and distant family:
If you would like to attend my mother Angela's funeral service tomorrow, but are sadly too far away, I am attaching the information for her Zoom funeral service!
I will be live streaming the service for all of her distant loved ones. My mother loved connecting and finding community online, and it’s only fitting I include that community in her send off.
Much love, Marina
Zoom Meeting
Time: Apr 8, 2021 09:30 AM Pacific Time (US and Canada)
To all of Angela's friends, this is her eldest daughter Marina:
My mom Angela Ronson peacefully passed away early Friday morning in her sleep at the age of 51. Life has a bit of a different outlook than it did when I woke up this morning.
I know 51 sounds young, but my mom was living on borrowed time. My family and I are so grateful we got to have 19 extra years with her after her AVM ruptured and she had her stroke in December 2002. I knew the day would come when I would lose my mom for the second time, I just didn’t expect it so soon.
My mom loved living, and she fought like hell to stay earth side as long as her body would allow her. She was one of the strongest and smartest people I’ve ever known in my life and I’m so blessed and grateful that she brought me into this world. Her wit and tenacity and resilience were thankfully passed on to me, as was her bravery. She stuck around long enough to get to know her granddaughter Layla and to see me and my sister both graduate from high school. These things are more than I ever could have asked for. I wish like hell she could see me graduate college next year, meet my future spouse, and that my future children - her grandchildren - could have met their grandmother. They would have loved her.
My mom loved my sister and I so much and was always so proud of us, even when we struggled. She gave us everything she could even though life was not easy. I am going to miss her dearly.
Angela is survived by her parents, Myra Metz and Robert Ronson, her stepfather Alan Metz, her sisters Carla Mahaffey, Vanessa Mejia, and Gina Ronson, her 10 nieces and nephews, her daughters Marina Pauline Garcia (me) and Sarah Alyce Daneri, and her granddaughter Layla Diane Abasta.
I will be in the process of making arrangements over the next few days and will keep loved ones posted. If you knew my mom and would like to get in touch with me, my number is (714) 478-3181. I may not be able to answer right away, but I will be responding to texts and calls as I can.
Donations toward funeral costs can be made directly to myself through Venmo or Zelle, both of which can be found via my phone number. Venmo can also be found via @marinapaulineee.
There will be a virtual service with details posted in the coming days. If you have photos of or with my mother, please email them to marinagarcia94@live.com or text them to me.
Thanks in advance for everyone’s love and support.
I am not in a hospital, care home, or any other facility. If I was, I doubt that I'd be here. I was sent home to die back in 2006. I never did die, I'm actually healthier.
I was supposed to die from an AVM bursting in my head. (Like an aneurism) That's not possible anymore. The AVM is gone. Stanford removed it in 2004. There's nothing there to bleed.
As for providing for my immediate medical needs caused by an initial bleed... I knew what to do. In former employment I have been a care home shift supervisor, a (medical in nature) social worker, and an early intervention program manager. I was more than qualified.
Doctor's usually don't give surgery
instruction during their own surgery.
That is what I am doing. I am not a doctor. I am a patient who says what to do next and my speech is hard to understand.
Giving instruction on how to care for a patient isn't new for me. I did this as a shift supervisor in a care-home. I had to train new staff and a care home is all about giving care.
Maybe if that last hospital that gave care that I was at had wrote down that I could say a word it wouldn't look so fantastic. Each step of my care can be said in 1-3 words. I could do that. After years of doing that, those words became sentences.
Nothing here looks fantastic. That's because I filled in missing information. Whenever something has been missing it is filled in with God or magic by other people.
Talking has been a big mystery. First off, this writing is not speaking. I think the first e-mail I sent was to a doctor in Belgium in 2006. It took a couple days to write the message and it was only a few sentences. This was after I got out of a hospital. This was the right person to write, though. I was coming out of Locked-In Syndrome and he has written on it extensively. As for speaking, my first words were never charted? I was still in a hospital at that point. I can't help lousy paperwork. My writing has never been documented by the government. I guess I don't speak, either.
Speaking of paperwork, what happened to all papers from Stanford? It's like they were completely erased. My AVM then just magically disappeared. That's a miracle!
The real miracle comes in the form of my memory. That should all be gone, right? Also, why did my higher education and employment history prepare me for this ordeal?
This post depends on this video clip. It's amazing that my story follows a comic book. The TV series, The Flash, is based on the comic book, and the video clip is of the show.
My current unfortunate situation begins with a stroke. It wasn't the usual clogged artery stroke we are warned about. I had a bleeding stroke caused by a tangle of blood vessels in my brain. The blood clot, or mess of blood vessels, or Arteriovenus Malformation (AVM) bled in my head.
At this point I appear to be brain dead. I even have paper saying so. Dear doctors, this is why you wait for blood to clear and then do a second scan BEFORE making prognosis. (I used to do Early Intervention for babies with brain bleeds.)
The trauma center froze me to start with. My body temperature was brought down to just above freezing. The heart stops, but the patient is frozen in time, so to say. It can't remain in that state for long, but most emergency procedures can be performed. This is for dire situations, and mine was.
I didn't bolt right up into sitting. This is great for the movies, but seldom does that happen in real life. In the video, this guy had been laying in bed for 9 months, He needed those abs.
I didn't wake after 9 months. I started opening my eyes after 5 weeks, but then I was made vegetative, PVS. I never woke. My coma just morphed into a coma with my eyes open. Technically, I am still in a coma. I'm still waiting to read in reports that I ever woke up out of a coma.
A couple hospitals later, or 2 years...
I wasn't struck by lightening. A computer on a robot arm shot gamma rays into my head.
This is a real procedure. I had heard of radiation use in cancer. This is it but I didn't have cancer.
I wasn't struck by lightening. A computer on a robot arm shot gamma rays into my head.
I had stereotactic radiosurgery to reduce the size of the tangle in my head, that AVM. Once it was small enough, a regular craniotomy was done to remove it and waste.
I, and I bet doctors, too, did not know that my body would start regenerating cells. Now it is super (as in comic book). The Flash is fast. I am slow. Call me the snail. My ordeal started in 2002.
I was going to answer 'yes', but I realized he was being derogatory. It was Twitter and he was a med student. He was calling me stupid.
This person didn't know that years earlier I had a stroke and exhibited decerebrate posturing to pain. This person was using it to mean 'brain dead.' The doctors said that I was brain dead back then.
It has been many years and I have had many procedures since then. I'm not the condition you call decerebrate anymore.
Do I look like I am brain dead? Yes, I am disabled, but I am not brain dead. The doctors back when I had the stroke could foresee the future, though. Who is stupid now?
I haven't used muscles that were paralyzed. As they come back, they are weak.
People can have a hard time understanding me. The more I speak, the better I am. I also have the computer for these longer thoughts. My speech is simple. What I write isn't always.
ASHA has some good stuff:
I will do the video over if I can't understand what I am saying.
3. Administer the maximum dose of pain meds possible.
Notice I say Feeding in the title and not Feeding Tube. The tube itself provides pain relief from hunger pains. I'd keep it.
I am writing this because I have a feeding tube and I know. I am/was vegetative. Also I write. So what if I was ruled unconscious? Maybe I was then, but I am not now. That's something that is being worked on.
So notice that I left the word TUBE off. This was on purpose. People do not realize there is some pain protection in the feeding tube. Remove this device and you open the patient to a world of pain.
I'm talking about hunger pains. Sometimes they are called "pangs." It doesn't matter to me what you call them. They are not pleasant.
Many have heard of gastric bypass surgery. A portion of the stomach is removed. Lesser known is Gastric Balloon. A balloon is inflated in the stomach with the intent of always making the patient feel full. (If you need weight loss surgery, talk to your doctor, and yes there is a feeding tube diet.)
The feeding tube also puts a balloon into the stomach. Nobody ever sees this part, but doctors and nurses know it is there. The feeding tube has an inner tube. (Some other devices do, too.) After it is inserted, the doctor or nurse inflates the unseen balloon usually with saline. Saline is the sterile water used. It has added salt and I believe it is supposed to match the water in the body.
I like this video because it shows the balloon.
This is pediatric, so mine is bigger.
The guidelines go as follow:
1. Leave in the feeding-tube. 2. Stop giving formula.
3. Administer the maximum dose of pain meds possible.
First off is leave the tube in. There is a second inner hole that starts closing within a few hours of feeding tube removal. There is no room for changing the mind. If the hole closes then surgery is needed allover again. If fortunately there is a bit of a hole, the doctor can use a medieval looking device. My tube came out once and I know. It wasn't pleasant.
Second is formula. Formula is what goes in the tube. Who started calling this stuff food? The stuff in the hospital has been unflavored and sometimes vanilla. It's a liquid diet. There is no solid food. At home, some supply companies have offered chocolate and strawberry. I currently take advantage of butter pecan. Long ago, a company got coffee flavored, but that was short-lived.
Last is pain meds. I don't want to know what is coming. OD me. I don't want to know. (Not knowing was BS for me. I'm still not supposed to know.)
My AVM that bled was in my cerebellum next to my pons. I remember hearing
that anyway. You can forget seeing anything at that time back in the
hospital. My eyes are better now. I can see big things in the next room. In
the beginning after the stroke I was blind. At the rehab, they patched my
right eye,
I had to have heard this at the rehab. They are the only ones who mentioned
the pons.
Now we are talking pontine bleed. That's classic Locked-In Syndrome.
You might have to enlarge to read.
My AVM bled primarily in my cerebellum, then the whole brain. Now
thinking way back to when I was in college, the cerebellum controls heart
rate and breathing. I stopped breathing at a clinic. Records say that I was
resuscitated at the trauma center.
I died at that hospital. Read the record.
Something had to have happened because I am alive and writing this.
This characteristic about me is two part. First there is alive.
I believe writing is due to a second surgery, but the skill could not
be seen right away. So much time has passed that the skill is
attributed to miracle.
My heart stopped at the trauma center. They knew it was going to
stop, so they did something to buy some time. They chilled me. I was
close to frozen. I had to be a bit of a sleuth to figure this out. The
records state that I was treated for hypothermia. My mother described
that an apparatus was put over me to control my temperature. They did
Whole Body Cooling! It worked.
I didn't drown. I did have a minor car accident, but I never went
into the river next to me. It was snowing where I was.
Freezing my
body was at the hospital. They didn't freeze all the way, but my heart
stopped.
Some will not see a connection of now to a surgery done years ago.
It was brain surgery, though, and outcomes take a long time. Yes,
everyone saw the immediate result, the removal of impending death.
The AVM was removed but no one saw what grew there to take its
place. I haven't even seen. I can only go by outward behavior...and
that looks very good!
So dear US government, I am not vegetative and I am not about to die. The AVM was removed back in 2004 at Stanford.
Nothing is there to bleed, now. You would know this if you read the
records. You would know this if you didn't delete the
records.
One more thing dear government, DO NOT SCHEDULE ANOTHER SWALLOW
STUDY AND CUT OFF MY FORMULA. That last time was a fiasco. The
formula is my only source of nutrition. Are you trying to kill me?
This is written, not verbal, and there is no need to swallow. You
never gave me Speech Therapy. Why would I swallow?
That I am alive and talking is proof of the efficacy of this procedure. I attribute writing to neural repair surgery performed at another hospital. Writing could not occur unless I was alive. These two hospitals are responsible for the current outcome. Actions are dependent on each other. Incredible knowledge is due to a third source, or myself. It all makes the situation rather complicated. It all begins with freezing me. Other actions could not occur if this did not happen.
__________________________
I must have seen it on TV: A person has a heart attack, or something and an ambulance takes that person to the hospital. There they freeze the person. Life-saving surgery is done and they live happily ever after.
__________________
Maybe I didn't see it on TV. I only know it because it happened to me in real life. Except for the "happily ever after" part, all that stuff happened.
I wanted to know what happened. I knew how to get and read records as I did this as a job requirement. I couldn't do this for a few years, though. I had tons of problems. (For the record, I've had experience providing care and developmental intervention.) I'd have to personally work on myself. I had a personal therapist.
Medical records read that I was treated for hypothermia. I was shocked. It made sense that I had Therapeutic Hypothermia.
I had a stroke and I stopped breathing at a clinic. I was put on a ventilator and into an ambulance I went. The ambulance drove down a mountain through a snowstorm to take me to a hospital. The hospital put me on a helicopter. I was flown to a trauma center.
At the trauma center, I was cooled. I wasn't frozen all the way. My heart stopped at that hospital. I had to have surgery to stop bleeding in the brain.
Videos of this procedure are hard to find.
I had a procedure where my body temperature was lowered before surgery. They don't freeze all the way because that can cause complications. The process is called Therapeutic Hypothermia.
What is Therapeutic Hypothermia?
In the above video, the woman keeps referring to babies. This process has been used more on infants. This video says 2018 as upload. My surgery was 2002. I bet that I am one of the first adults.
I type this with my pointer finger. It took me years just to be able to do that. Obviously, it has not been "happily ever after." It's been hard work for me.
Body Cooling is done to preserve the brain. I got lucky. They chose the right brain. I was smart before, but this is shouting. The whole world can see it. Something happened.
They wouldn't admit that surgery worked, so they wrote down that I died. Actually, they wrote that I stopped breathing in 2005. I think I'm dead if I am not breathing.
I have one question dear government...
What happened to the AVM, the blood clot, that was in my head?
This is an open letter to ZDoggMD regarding the show posted below. His YouTube profile says "Zubin Damania, MD. Stanford-trained doctor, entertainer, and host of The ZDoggMD Show.".
For reals? You're throwing your hat in and giving your opinion on consciousness? Good luck to you, I've been hitting at it for years. I've been named as not conscious for years now.
Oh gosh, how did that happen? In 2002 I had a stroke. I was left in a coma. A month later I started opening my eyes. I was not responding, so I was made PVS, Persistent Vegetative State. A week or so later, I'm responding to familiar voices by blinking. I still can't talk or see. I can only move my head. Oops! I'm minimally conscious. This still can't be seen, and I can't say "Hey, wait!"
Too late. I was already made vegetative on government paperwork. It's also past the deadline. There's no room for late recoveries. That would be a miracle. Those don't exist in government.
This state is not conscious!
You can't get better, according to current theory. When I said "I think I'm getting better," to the doctor in the government program, he told me that I was imagining it. I verbally said it. I had been nonverbal.
Remember when growing up being told not to drink beer because it kills brain cells? Those cells never come back.
This thinking was wrong. The study of neurogenesis grows, but this stupid notion still exists.
So I never got better.
In 2004 I had surgery at Stanford to repair my brain. I had to go through the clinic as the government refused because of the stupid notion. I got better for Stanford. I didn't get better for the government.
Thank you for addressing the subject. You will be listened to.
I'm going to use names of social media sites, but I don't endorse any of them. As you can see, I have a YouTube site, but I don't primarily use it. Some folks may like LinkedIn. I've noticed quite a few brain injury associated persons over here. Twitter is still my personal favorite. As a side, MySpace still exists, but it is a shell of it's former beauty.
The take is that the internet is huge... AND I DON'T PAY FOR ANY SERVICES. So when I found out about your group and the supporter thing, I paused. I haven't forked out any money, so far. I'm still thinking. The show is still publicly available. This is all I need right now.
A person in a coma has to be fed. They don't wake up to eat and then go back to sleep. These people are usually fitted with a feeding tube, and the giving of nutrition becomes a medical aspect of their care.
FEEDING TUBES ARE MEDICAL!
Formula is used for nutrition. The "drink" is this formula. Patients don't drink it at all. Rather, it is personally delivered by a feeding-tube. A person dies without food. The formula has all the nutrients of food. If given the formula, a patient who cannot eat will live, usually. Other medical problems may occur, but feeding tubes are meant to avoid starvation.
My formula happens to be Ensure. It is sold at the local grocery store. In an emergency I could get some. The containers look different on the outside, but that is marketing. I get the wholesale medical cartons from a supplier, not the fancy bottles sold in stores. Marketing now has all kinds and flavors, but I take the good, ol' original. Going back in history, it may have been the original formula.
If I purchase, then I try to find coffee flavored.
I bought this on-line.
"Bleh," is all I can say about the unflavored formula given at one hospital. I get "You can taste?" Yes, I can taste, and tasting unflavored feeding placed directly in the stomach is not instant. I have reflux. I'll instantly taste it if it comes back up. It's usually vomit by then. Tasting unflavored formula and barf is not pleasant.
Recently I saw a science video talking about holes in the body. I guess if you rub a raw, cut clove of garlic on the sole of your foot, you taste garlic an hour later. In the same way, give me coffee flavor Ensure and I taste cheesecake an hour later. I assume digestion has something to do with the flavor.
I use a feeding pole.
The formula has to make it's way into the body. This is how it becomes a medical procedure.
The feeding tube is a port into the body through the stomach. Likewise, an IV is a port into the body through a vein. There also is special tubing and usually a bag to hold the substance. These are medical supplies and not food.
Sometimes there is a pump. I do not have one. I have a Feeding/IV Pole, and natural gravity becomes the driving force of moving the formula.
My favorite flavor was Butter Cream Frosting. I believe it was this brand, and I doubt they still make it. This picture was on E-Bay and the product is probably discontinued.
During 2003-2006, while still in the hospital, I taught myself how to taste. How you ask? I used the flavored lip-glosses and lip-balms for children. I had a ton. I couldn't eat. I'd put on a flavor when I had a tube-feeding.
Applying and opening/closing lip balm became Occupational Therapy. I was careful to remove lids over my lap. Retrieving a lid that rolls under something could be impossible.
_________________
I know how important the feeding-tube is for survival.
1-10-2021
I watch my feeding-tube like a hawk. I got it 18 yrs ago. I should have died 18 yrs ago. It kept me alive for 2 years while waiting for life-saving surgery. I breath on my own; I speak on my own; and I now write on my own. That feeding-tube has kept me alive. (It's not the same tube. I periodically have it changed to prolong life.)
I know how to temporarily reinsert the tube until medical care arrives. I know how to provide daily care to keep it maintained. A person in a coma can not coordinate their care. A service coordinator is needed. Emergency services can be provided by a nurse.
There is a difference between food/formula and medical supplies. A conscious, aware person, with knowledge can serve as coordinator.
The lollipop thing I do is something I dreamed up all by myself. I'll need to explain, or me eating anything will look like a miracle. I used to provide early intervention and I also did the job of disabled services coordinator. The lollipop training I do comes from these experiences.
My formula and feeding supplies were once cut off by the government. They required a swallowing evaluation.
I thought that if I could only swallow the formula, then I wouldn't need any supplies. Then I thought, "I can do that, sort of." When I did Early Intervention a few kids had eating problems. I'd use my experience.
I haven't had food in a long time. Lollipops are used in a patient that can handle their saliva but cannot swallow food. This is why I use lollipops. The goal is only formula intake.
Swallowing would be an outcome. This now happens to be the issue that determines me being vegetative. We'll see what happens.
I have somewhat of a swallow now, but nothing that would pass a test. It needs to be stronger and more consistent. I continue with lollipops.
