People say it, and I agree, that I don’t entirely accept the conventional protocol for brain injury rehabilitation. I’m not saying others haven’t tried the methods I have. I’m just saying I never heard of it. Certainly not all of it. I refuse to confine Ryan to a bed. He spends no more — and no less — than anyone else with a typical normal sleep habit.
If nothing else, he stays busy. Boredom should not be a problem for him as he gets cycled through activity and rest throughout the day. I believe this is critical in his physical health and cognitive recovery (if it’s still possible). He broke new medical ground with baclofen. He was one of the first few TBI patients to use hyperbaric oxygen treatment (HBOT). He pioneered functional electrical stimulation against resistance for his muscles. Physically, he is the picture of health.
Which brings me to something that really pisses me off. It’s borne out of ignorance. People mistakenly believe people in a coma (or vegetative state) are always on life support. That machines are keeping them alive. This, in fact, is rarely the case. These types of patients are few, because they are completely brain-dead. There is absolutely zero electrical activity showing on an EEG. All channels are flat-lined and they have no hope.
I follow many websites of those coping with a loved one with brain injury. Really, none of these are in worse condition cognitively than Ryan. The comments left by the public on these sites are mostly supportive, but some are harsh and idiotic. Ryan is at the extreme end of this type of injury, so just about everything I say is easily applicable to others. Make no mistake, I am the expert on this topic (and I hate it). This gives me the authority to set a few things straight.
For example, when I hear people tell caregivers to “pull the plug”, I just have to wonder what plug they are referring? Most, like Ryan, are plugged into nothing. Their body survives on its own. The only thing I want to pull the plug on is these commenter’s internet connection.
Ready for another? They say “just let them go”. How exactly would one do that? Stop feeding them? Smother them with a pillow? They claim it’s the “practical” thing to do. Sorry, I don’t think murder is at all practical in these cases.
One more? Okay. These commenter’s claim that the injured are being kept alive (which is incorrect, in itself) by those who love them. We should just let go, they tout. That we are making them “a prisoner in their own body”. Seriously, do they really think this is what we want? That we somehow do this for ourselves? Does anyone else see the complete lunacy in this statement? Who, in their right mind, would lay everything aside if given the choice? Seriously!
To me, this is the exact opposite of selfishness. It’s the ultimate in responsibility. It’s unconditional love. It’s sacrifice on steroids. It’s accepting that personal hopes, dreams, and happiness are the price of unyielding loyalty. A price so high it bankrupts a person of their own being. We use our life and longevity as collateral, borrowing an un-payable amount against our well-being. We know it will most certainly come due unfairly early.
You have opened my knowledge to TBI in many ways and you and ryan are so brave every day. Amen to this post.
You are an amazing man and father. One can only hope, if ever in a position like Ryans…that we have a loved one by our side like are for Ryan no matter what. God Bless you, your family, and most of all Ryan! Hope is never lost…
Well said Ken. God Bless you!
Excellent read. I agree with everyting you say. Your effort for Ryan is unconditional love and he’s fortunate to have you as his father.
Been there… done that, Ken. I think that the worst comment that I heard was when my husband was “out of the woods” physically. He was stable and breathing on his own (still in a coma). I asked the doctor “what now?” hoping to hear about all of the upcoming therapy, and the response I got was “he will probably end up dying in a nursing home of bed sores or pneumonia”. It was at that point, he knew he was going home with me.
Ken, Just read this post and like Carla said ,every comment is right on!Anyone who has read your posts for any amount of time knows how well Ryan is doing …like you said he’s busy all day (and you all too)and he is in better shape than probably a lot of us.Don’t know where these people get their info from ,but they should just say nothing at all ,Ryan is getting better each day and know his awareness is there and it will happen soon .Just keep being the amazing family you are ..Always here for Ryan and you all LOve gail
Every one of these comments are spot-on. I think, like you said, the people making the “just let him/her go” or “pull the plug” comments are making them out of ignorance. I remember when my brother died at the age of 42 how some people said things that they thought would help, like, “I know how you feel.” Well, no, you really don’t unless your brother/sister collapsed and died with no warning and in apparent good health. Others would avoid us because they didn’t know what to say. Sometimes all we needed was a hug or a “thinking of you” comment or card. That can be every bit as powerful and bring great comfort.
I can’t imagine anyone on Ryan’s Rally saying these words to you unless they’ve been living under a rock and not paying attention over these past few years. Ryan is very much alive, and from what I’ve seen, making tremendous progress, defying the odds at every turn. That, my friend, is not only Ryan’s will, it is because of your devotion/dedication to his healing, and because God is also willing it.
Stay strong – we are all here for you!!!!
Your words are filled with wisdom. Ryan is so much alive and teaching us through you.
I pray for the Nameless Ryan’s who do not receive the care or the family support and are institutionalised where their very dignity as person’s is randomly dismissed through ignorance.
We must be so careful to protect the human rights of people with TBI.
I pray daily for Ryans continued health and ask our Father through His Son to Bless him and his family throughout the day.
Well obviously none of the Supporters on this site would ever think this, let alone say it. Every penny, every tear, every prayer is so that Ryan has every chance for recovery. Yes I said it – recovery. You’re doing everything that’s in your heart – the people who make these remarks – they must have no heart. As long as you keep fighting for Ryan – so shall we!
Amen! Amen! Amen! I get sick of the ignorance about TBI. We deal with it on a daily basis. It is so tiring and so I choose not to explain anymore and let them believe whatever they want. Of course sometimes you just want to scream at them. The worst is when people tell me she doesnt understand. How do they know? Have they actually been there in her position. She laughs at jokes, she must be understanding something. What is keeping her from following commands I dont have a clue. But Ken I am with you, you best believe I will what I can for my child. And let Courtney be the first to tell them kiss off, I knew what you were saying all the time. Our babies will have their day and their say!!! Thanks for preaching it. Love Becky and Courtney
You are right Ken, it is frustrating. Many people are uneducated about the differences of being in a coma, which can be drug induced for medical reasons, or caused by trauma, drugs, etc, or being brain dead, or a vegetative state. Unfortunately they do not take the time to educate themselves unless it is personally touching their lives.
The laws today guide the medical community as to what is legal and what is murder. Like you said, we don’t just “pull the plug”. Unless you have worked with these families in the medical field on a case with either of these scenarios, or been in the family situation yourself it is best to educate oneself on the differences before offering suggestions to others.
When I cared for my husband we didn’t have this completely uninformed comment made to us, thankfully. The battle that we had was to help people understand what dealing with a head injury was like. \
We were told that he was not in a coma weeks after the head injury occurred, but because he didn’t automatically wake say “Hi Mom” and resume living in a completely typical way again everyone assumed he was still in a coma. This hurt so much for years because it felt as though the little progress that we had made was not being acknowledged.
After a few years, I determined that I was fighting a losing battle and only explained our situation if the person was someone very close to us or I thought might be teachable. Otherwise I chose not to educate when I thought the person would not likely get it. I began to understand that this was so far out of most people’s realm of understanding I just accepted it didn’t let it bother me. Most of the time that worked and that helped me not feel so much pressure to help everyone to get it. I could focus on what was truly important, loving and caring for my husband. Their comprehension of my circumstances only impacted me when I let it get to me.
Some of the harsh comments to me were harsh, but I know they came from a helpless place of trying to make me feel better. People will also say the darnedest things when they are ill at ease. Most people that said crazy things were not evil, just very ill informed and that wasn’t likely to change. I am just glad I got over trying to change them.
Thank you for posting about Ryan so often. It helps me to remember to pray for all of you. What a testimony to real love you and your family is.
margie
God bless you, Margie! Thank you for sharing your perspective with the Divineys and all of us — that’s so helpful. I agree with you completely, that some people just don’t get it and probably never will. Not everyone is capable of such self-sacrificial love. God certainly provided Ryan with the right parents and your husband with the perfect wife. Keeping you all in prayer for continued strength and healing…
Rita, Thank you for your sweet comments. I am no longer caring for my husband. He is in a much better place. Head injury was not easy to deal with all those years, but it has enriched my life in so many ways. Now I deal with another very misunderstood subject — mental illness in our son. I am constantly learning how to love unconditionally in difficult circumstances.
Ken, those who make comments like these of which you speak are exhibiting ignorace of the worst kind. They don’t know the first the first thing about TBI and are too lazy to educate themselves through research. The Rally supporters here whose comments that I read obviously know about TBI THROUGH YOUR POSTS AND THEIR OWN STUDY. I’m thinking that hardly a day goes by that many of us are not learning more about new studies and hope for our friends and loved ones who have a Traumatic Brain Injury. Medical science is fast paced these days and we must take time to read, listen to the news and keep up. Please forgive ignorant comments and suggestions. They know not!
Your reasoning is unassailable. Sometimes it is better to keep one’s Big Trap shut…talk is cheap…
I meant THOSE people shut not say anything at all…
Wow – constantly amazed by your growing wisdom, Ken! We all appreciate you sharing your thoughts.
In regards to the “prisoner in your own body” comment, why on earth would people think any caretakers are purposely making their loved ones prisoners? In your situation it is so very obvious that Austin Vantrease and his gang of goons did that on their own without regard to Ryan or your family! You and your family are trying to help Ryan escape his prison by caring for him every minute of every hour of every day. Keeping him healthy and active is the key to his freedom!
Pull the plug? Let them go?! Why would any caregiver be willing give their loved one away to chance and not intervene with the best care possible to bring them through? Ryan is a living, breathing, active, cognizant PERSON.
Good grief!
I’m with John: AMEN
Ken, very eloquently stated, and I am applauding your every word. There are many arrogant, vain souls in this world who feel it’s their business to play God. They pretend to have compassion, but their words and actions say otherwise. How pompous of them to cast aspersions on those who make the ultimate sacrifice in love and loyalty to care for a child, mother, father, friend in need. Life is a valuable treasure, not meant to be deliberatey snuffed out. We go the distance for those we love, no matter how hard it might be. Family members need each other to get through the rough times, and parents do not give up on their children. As John said, we are 100% behind you, we always have been and we always will be.
Wishing you and Ryan a peaceful day, and may you always know how much your family is loved, cared about, prayed for and treasured.
Paula
Thank you for sharing your selfless, relentless, unconditional love and care for Ryan — you and Sue both — and for continuing to educate people on just what that looks like (ideally) on a daily basis, as well as Ryan’s evolving condition itself. TBI is so misunderstood by the general public. Other challenges that parents face with children can draw similar comments from “caring” friends and family, but it takes a great deal of courage and supernatural love to make the choice that you do every day: to never let go or “pull the plug” on your child, no matter what. We applaud you for refusing to give up on Ryan, because we know that he is healing and fighting every day to come back to you; and we greatly admire your strength, intellect and determination in this battle. We are here to encourage and support you every step of the way — you got this, Divineys! And someday, you’ll receive your reward for not giving up, and all the sacrifices will have been well worth it. Keep hanging in there, one day at a time, and we’ll keep praying you through to victory. And, Ryan — you look awesome! We should all be so fit and healthy…
Amen, brother. You are absolutely correct and we’re behind you 100%.