So my brother suggested and then my neuropsychologist tasked me with a homework assignment of sorts; to gather my thoughts and organically post on the blog. Why do I take out my emotions on those closest to me?
My initial response was “because they’re closest to me and that’s the way it works” but that didn’t fly in her office. Regroup, dig deep and answer.
Feedback: feedback is difficult to take and on an emotional level it’s even harder. “They” say that I am still working through the true consequences of my brain injury and that is “Awareness” folks. I hear what everyone is saying but I can’t see it. It all looks the same to me. I know that feedback is important but when I hear it, I get defensive. Emotionally, I take it as a character attack but intellectually I know that it is constructive criticism. Those who are a part of my support team care enough to give me feedback, to help get me back to clearer thinking but it seems that the emotional beast finds its way out a lot faster than the sloooower but stronger intellectual pool of gelatin right now.
Eureka moment! Here it is…ready? There is regressed behavior as a result of my brain injury, not opinion that’s a fact. This regressed behavior causes me to react on a more emotional level rather than intellectually processing the information. Ahhhh…that’s why everyone talks about me being more “present” during therapy sessions and they wish I would stay in that mode. During therapy, I use more critical thinking and out of therapy, I relax into the brain injured emotional rationale which can be distorted and is probably also effected by this dag-on depression.
In this life/battle, my brother Nate is one of the closer people to me and not that he is the only one closest to me but this assignment was his idea, so here ya go Nate. I am the older brother and “technically” supposed to be more mature, wiser, stronger…(still stronger), leading, setting an example.
However, Nate my YOUNGER brother is now the more mature, wiser, (still not stronger) leading, setting an example brother. He took my role, but the truth is the accident took my role. So,when Nate gives me feedback it’a almost emasculating.Not really but kind of. Intellectually, I do know that I remain the older brother but when he gives me feedback, it feels like he is scolding me. Subconsciously, I need to put him in his younger brother place and that definitely causes a rift.
Why do I take out my emotions on those closest to me? “Because that’s what we do” but like me; if you dig deep, regroup and answer, you will find the root. I always knew how important relationships were but I don’t know that I ever fully realized just how important each person was in my life.
Right now, I may not be able to articulate those feelings outside of the therapy office, I may be inappropriate, I may come across as a “Dick” Tracy but I am working on it. I’ve told you before that this brain injury is the “hardest” thing I’ve ever done, that I walk through swamp fire, that depression is kicking my tail and that facing a lifetime of recovery is more than I have wanted to face at times but know, even though it doesn’t make it right, the pain I have caused is a reflection of my own internal pain and struggle.
I am going to work on strengthening my intellectual processing and not let my emotions lead the way. I don’t want to push my friends and family away. I don’t want to hurt anyone. I do know that I could not do this without you. I love you…
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.
APRIL 27, 2011
Mike’s first speaking engagement with Brain Injury Services’, Speaker’s Bureau was a success. Well, if you don’t count the fact that I did not check the camcorder to see if the CD had enough room to hold the entire speech. ARG! I got everything but the last 30 seconds, so when you get to the end of the video; this VERY IMPORTANT paragraph, is what you will miss:
“My name is Mike Rosner. I am a 28 year old survivor of traumatic brain injury. I can’t imagine my life without the support of Brain Injury Services and the Speaker’s Bureau. They are a United Way Agency. I urge you to support these organizations and consider the impact a single choice can have. Thank you.”
If I am successful, the video that will be linked to this post; although a poor cell phone quality video, was taken at a time when my son could not speak. The video was taken November 19, 2007 when for the first time after the accident, Michael was off the ventilator. A therapist had just left the room after completing one assessment to determine if Mike would be transferring to a nursing home or to Mt Vernon Hospital’s Brain Injury Rehab Unit. The test was necessary because after a month of endotracheal intubation and ventilator support, there was a 50% chance that after extubation, he would have swallowing difficulties. He really didn’t meet much of the criteria to get in to Mt Vernon, but if he had swallowing difficulties, he would not have been accepted.
By chance, I happened to be there when they performed the assessment and in amazement I watched as Mike purposefully followed 1 out of 3 commands (not quite what they were looking for but it worked) and was able to swallow ice chips, applesauce and orange juice with ease. I remember watching it all play out and feeling so giddy with excitement! When the director said “let’s send him to Mt Vernon”, I wanted to throw open the windows to tell the world that God hears us and through our prayers, thoughts and believing in miracles, Michael was receiving!”. I didn’t throw open any windows, but if you’ve been following this journey, you know I blogged about it.
You will see and hear on this video that although there was a lot of background noise, Michael made no sounds. He could not speak. The broken pathways in his brain were not yet able to help him remember speech but we believed that those connections would find their way and one day, through continued prayer for healing, we would hear his voice again.
Michael’s brain was injured on October 21, 2007 after he made the decision to get behind the wheel and drive after drinking but tomorrow; three years, six months, six days or 1285 days or 30,816 hours or 1,848,960 minutes after the decision that changed the course of his life forever, Michael’s voice will be heard.
On April 27, 2011 at George Washington University, as a member of Brain Injury Services Speaker’s Bureau; for the first time in public, Michael will use his voice to spread awareness. How will he tell this story in a ten minute capsule?
I can only hope to have been responsible for you and your delayed decision making process in which you may be wrestling with the idea of whether or not to drive drunk event though I just want to be certain that I make NO claim to be without SIN?
I am full of wrongs, I always, usually say the wrong things, speak before thinking, could I steal that comment back? just prior to hitting your sound channeling organs. (also, why I continue speaking like I’m from another century?)
Though, I can say that I am chock full of humor!and whether you, you being Amanda Kibben , think that I’m funny or NOT.
The (my) humor is a present. Think of it as my little present to you, for you to remember me by because I may be “gone to November” but it’s already October. See what I’m saying?
Circles I run in my speaking, I am hopeful though that perhaps (Nate, perjaps?) my system will be exhausted of all this nonsense by the time I begin my speaking circuit. (time TBD)
I was always the one with no fear, I still feel like that. No one can sustain attention for three years, I have close friends that have gone far and above what was ever expected of what anyone would have expected. The longer you stretch things out the less and less people are still in line. ”On a long enough time line the survival rate for everyone drops to zero” Tyler Durden Fight Club
So review the difference between the first couple of paragraphs and this one. The first paragraphs were thoughts that were typed by me. The paragraph beginning with “I was always” are my thoughts typed by someone else. I say to myself “Gosh, I’m such a fool!” I’m an idiot!” because I get so weird but I don’t know, I have a brain injury. I can’t explain why I speak like I’m from another planet sometimes, I want to think the it’s 100% humor but then it doesn’t make sense and only funny to me. One function at a time please. Talk to me in person, I am told I am less robotic. Talk to me on the phone, or no, how about when I leave you a voice mail? well, there’s two or three functions required and now I am talking carrrazzzy. It’s ridiculous for me to expect that my friends would be in the thick of it still. I don’t blame them, they have work to do.
Back on track – year three. I am not celebrating life. I am in a funk. I feel like it’s all depression. I screw up every relationship. I don’t even know how I do because I can’t remember. It’s like drudging through a swamp fire every day, it’s almost gross. The one constant in my life is therapy and it feels like the healing process would be closer to complete BUT that’s the thing about brain injury. It’s going to be three years and you would think that it would be on the closer side to complete but it’s not. It’s still a lifetime of recovery. I have the life experience of a 28 year old but the functioning brain of a what???
For me, at this moment the single most devastating injury I sustained is the one that controls initiation because the thing that controls what we use to connect to other people is not functioning like it used to. I would be hanging out with Karl, Molly, Justin, Matt, Shannon, Adam, Dan and Jim but I’m not, I’m drudging through this swamp fire and I can’t even pick up the phone to say ”hey, what’s up?”
When I do get a chance to hang out then it’s over stimulation city and it seems to be just a vicious cycle. Like take no prisoners vicious. The thing about brain injury is that the brain processes information slower and too much, too fast = over stimulation = can’t think. Retreating to my phone (games, Internet) controlling the speed of information is a strategy but not a healthy strategy. I am aware and I have attempted to make a conscious effort to stop retreating. Attempting.
Hot air…you get up every day knowing what you’re supposed to do right? Monday morning you wake up, you know you need to take a shower, brush your teeth, get dressed and either head to work or start making phone calls. Without thinking, you still know it’s Monday and you’ve got this and this and this to do and it needs to get done in this order. I wake up and have no idea what day it is even after I checked my watch 3 or 4 times, have no idea what I’m supposed to do with my day even after I look at my planner that is well laid out with appointments. I look, walk away and then get my phone or walk to my computer and what I am doing at the moment is the only thing I need to do. “Mike, you have speech today.” goes in one ear and out the other until “Mike, you need to get in the shower”, ”Mike, you need to get dressed”,”Mike, we need to leave in 5 minutes” “MIKE! Get off the computer!!” When you look at the time line of how often things are moving forward for me and how often things are moving backward, is it so difficult to figure out that maybe my life is a little different than yours? You have no idea. How do you think it feels to need help initiating what you should be able to initiate, plan and carry out on your own? I’ll tell you, it feels like drudging through swam fire!
My speech therapist asked “do you remember what being happy feels like?” My answer is NO. I love life but I hate life. I despise life. I was cursed with this blessing and the gift of a second chance at life. Do you know how much easier it would be to just be asleep forever? I used to wake up and not know what day it was because I had an awesome time, now I wake up and don’t know what day it is because I just don’t know.
I know that life is beautiful but to think that the most mundane things task my brain to exhaustion, is ridiculous. Again, ”On a long enough time line the survival rate for everyone drops to zero” and that includes me which is even more wild.
Next week – October 21, 2010 - I was not prepared for how I would be feeling at year three but I do understand that the greater the awareness, the greater the recovery. I guess it goes without saying that I am much more aware of my injuries than I was last year but I didn’t imagine the swamp so vast, the fire so hot and that this would be or feel never ending.
Is hope still alive? The human body will heal itself and time will keep moving forward. But am I in it to win it? Do I have the energy to work through this depression? Yes, of course I do. I just don’t know how it’s going to happen.
OBTW – the Space Cowboy metaphor…I’m on Pluto. Either way, I can’t breathe.
It’s been quite awhile since I’ve felt like it would be ok to post. Set aside the fact that my younger sister died without warning in December from an anoxic brain injury or that my brother in-law, his wife, their four year old son and teenage daughter and four others were murdered in Appomattox, VA a couple weeks later, my feelings have been too intense, my heart too heavy to post on the blog. Isolation is sometimes where I go to heal.
There’s another reason I haven’t been posting updates and that is at Michael’s request. He is no longer comfortable with broadcasting the details of his injuries or recovery but that’s not necessarily a bad thing. Awareness is progress.
There are levels of recovery; you may recall references to the Rancho Los Amigos scale; there are 10 levels after a brain injury.
Level I – No Response, Level X- Purposeful, Appropriate: Modified Independent
During this past Monday’s speech therapy session, Mike’s therapist said that he is a solid Level VII. If you care about Michael, this part is important to read and understand. First, I want to remind you that Michael’s accident on October 21, 2007 was due to his decision to drive after drinking with friends ~ he was not expected to live. I want to once again thank you for the surge of love and goodwill that ensued, the prayers for healing, the support for Michael and our family because it was so powerful, it was the most powerful thing I have ever witnessed. The movement, the prayers for a miracle is the reason my son is alive today. Michael survived against all odds and the blessing we received with that healing still knocks me to my knees. Amazing Grace – if you don’t know the lyrics, Google it.
What I want you to understand about my son is that he made a behavioral choice 10/21/07 – he no longer has that luxury. His damaged brain still trying to find it’s way, has not settled and is not healed. The truth – his brain will never be fully healed, he will NEVER be the same. Two years and five months later, the severe traumatically injured brain makes many of the behavioral choices for him. As difficult as it or he may be at times, it is worth it all. The behaviors will improve in time and we must find and have the patience to get him through this level of recovery. Without our support, without our understanding and compassion, the injured brain wins. I won’t lie, the behaviors can be painful and very frustrating. The aggression, the inability to control his emotions, or analyze appropriateness or assess the consequences for actions has been a driving force in Mike’s social life and friends dropping to almost non-existent. The isolation, the lonliness, the glimpses of awareness result in displaced anger toward me ~ Mike is pissed at me a lot these days. Sometimes I can handle it, some times I can’t but as I have always done; I breathe in, breathe out and place one foot in front of the other. I am still pushing, he is still pushing and he IS STILL beating the odds.
Please take your time reading through Level VII, it may help you understand; it may help you not to judge too quickly.
Level VII – Automatic, Appropriate: Minimal Assistance for Daily Living Skills
Consistently oriented to person and place, within highly familiar environments. Moderate assistance for orientation to time.
Able to attend to highly familiar tasks in a non-distraction environment for at least 30 minutes with minimal assist to complete tasks.
Minimal supervision for new learning.
Demonstrates carry over of new learning.
Initiates and carries out steps to complete familiar personal and household routine but has shallow recall of what he/she has been doing.
Able to monitor accuracy and completeness of each step in routine personal and household ADLs and modify plan with minimal assistance.
Superficial awareness of his/her condition but unaware of specific impairments and disabilities and the limits they place on his/her ability to safely, accurately and completely carry out his/her household, community, work and leisure ADLs.
Minimal supervision for safety in routine home and community activities.
Unrealistic planning for the future.
Unable to think about consequences of a decision or action.
Overestimates abilities.
Unaware of others’ needs and feelings.
Oppositional/uncooperative.
Unable to recognize inappropriate social interaction behavior.
These are the highlights; PERSONALITY CHANGES – SLOWNESS – POOR MEMORY – IRRITABILITY – TIREDNESS – RAPID MOOD CHANGES – TENSION & ANXIETY – AGGRESSION – LOSS OF DRIVE & MOTIVATION – LACK OF INSIGHT – LOSS OF FRIENDS – DISINHIBITION.
Aggression
Michael is less able to deal with frustration and cannot always use reasoning skills to cope. He has difficulty generating control over his emotional reactions, and allows irritation to emerge as aggression. His sudden outbursts of aggression are a reflection of a lack of emotional tolerance and it can put enormous pressure on the family. It is painful, it hurts, it didn’t get easier, it is harder than ever. Just ask Nate and Emily.
Disinhibition
Another tough one is the loss of the ability to inhibit urges. Mike can be impulsive and is often inappropriate with social behavior. He might make crude or sexually inappropriate comments to others. I think the lack of that understanding is what has largely resulted in the social rejection and condemnation for his behaviors. The problem is; a person with the brain injury cannot control what they cannot see or comprehend the need to control. It is, what it is.
Loss of Insight
As a result of Mike’s head injury, it is now difficult for him to make judgements about himself or to gauge other peoples reactions to what he says or to his behavior. He may not always understand why he can’t complete tasks which he used to be capable of doing. The lack of insight also affects the ability to understand other people’s behavior or motives, and many times he isn’t able to empathise or imagine how someone else is feeling. I hear it in the group meetings I attend with Mike, the brain injured person almost always comes off as self centered. loss of insight.
Loss of Friends
Disinhibition – discussing personal details or asking personal questions without recognizing the other person’s discomfort. I think that disinhibition and lack of insight is causing an unintentional alienation from others – he is losing old friendships and finding it very difficult to establish new ones.
Drive and Motivation
Damaged frontal lobe are parts that concern emotion, motivation and forward planning. Mike is working toward rehabiltating the very damaged frontal lobes and the cognitive ability that involves planning and analizing because they are weakened. It is more difficult to initiate or plan future activities. There are no normal levels of drive and motivation to carry out routine activities. Not a choice, it’s a brain injury.
The GOOD NEWS? Research!!! New research shows that TBI patients exhibit significant improvements in their social, cognitive, physical, and emotional functioning after 2 years post-injury regardless of the severity of their initial brain trauma. Patients who sustain severe TBI continue to make gradual improvements in their functioning for at least 10 years post-injury.
Michael, I apologize for the update but this brain injury can’t be swept under the rug. Knowledge is power and the more people know and understand about brain injury, the more improved YOUR life will be. You ARE strong like bull, buddy. You ARE crushing it, don’t let anyone tell you or make you feel anything less. I’m not perfect, you’re not perfect…life goes on.
Today begins the end of year two for Michael. For so long we thought that by the end of the second year, Michael would be where he was going to be and we should be happy with wherever that was. We were ok with that.
Honestly, two years ago on this day I would have been happy with just hearing he would live. The doctors or nurses could not or would not give us that for almost a month. A month of not knowing if your child would live or die is a lifetime. I would have been happy with a few encouraging words but there were none. They were supportive, they were honest, and when we thought a squeeze of a hand meant something, they might have been a little patronizing. They were many things, but they were never hopeful. No words of hope at a time when hope and faith were all we had. Hope that God would hear our prayers and faith that if we believed, we would receive. Hope and faith got us through the night but it was in you that we found the strength to believe in ourselves.
For me, your love and your support gave me the strength to breathe when I no longer wanted to, the strength to get out of bed and the strength to put one foot in front of the other. Walking through the fog of those days to somehow face the death of my son,whether it was the death of his mind – the Michael as we knew him or the death of the vessel, his body. To face that with dignity and grace took/takes everything; but to honor him and honor God who gave him life, I was/am willing to give it all.
“Your son will most likely be a vegetable”, I would have been happy with that. “He may not recognize you, he may not remember who he is”, I would have been happy with that. “he may be blind, not be able to walk”, I would have been happy with that. But that was then. This is now. I don’t say “I am happy with that” and leave it alone. Today, I am “the General” – Michael is pushed to be everything that he is capable of being. Today Michael is surrounded by the best support team we could ever hope for. The area’s top therapists headed and spirited by Brain Injury Services – the most caring, amazing case manager – Chris, no words could describe the gift Michael received in his neuro-psychologist – Dr Alf , a specialized, wait listed speech therapist – Debi, an young up and coming cognitive rehab specialist – Anthony, a PAL – Mike A, and totally awesome Brian who jointly spearheads the Wise Guys. At the two year mark, Michael is moving forward toward recovery. He is still recovering from a severe traumatic brain injury and is seeing marked improvement. He will continue to recover as long as he lives, if that is God’s plan. He will continue as a survivor of the most devastating injury a human can endure. A severe injury to the brain affects everything you and I take for granted. EVERYTHING!
“Michael seems fine, is he driving?” How many processes do you think we use behind the wheel? Drivers must be able to concentrate attention in their central vision, but they must also possess good peripheral vision–the ability to see things “out of the corner of your eye” , and to perceive spatial relationships. You need to see and hear things that come from all directions and constantly decide what is important and what is not. Drivers need to process a lot of information and react quickly in an appropriate way. They must also make sure their attention and reflexes are sharp no matter how long or short the drive. When you drive you constantly make judgments, whether you’re in the midst of merging into flowing traffic on a busy highway or just deciding whether or not to drive through a heavy rainstorm. Making these kinds of judgments requires self-awareness and an understanding of your own strengths and weaknesses. Is Mike driving? No, not yet. He is still recovering from a severe injury to his brain. Injuries to the brain are not always visible on the surface.
Take two steps forward then one step back is the road we travel. There are many stages of recovery and out of the available labels, the rancho los amigo’s scale between level 7 and 8 is a pretty good reference. For friends and family, educate yourselves is the best advise I can give. The more you know about what happened to this person you love, the more you will understand why. If Michael behaves in a way that doesn’t make sense to you, if something is said and you find it offensive - don’t ignore it. Be kind, be respectful, be yourself because you can be. You may not have that control if you had a brain injury. It is something we take for granted. Educate.
I won’t go into the specifics of what those stages bring, Mike would prefer I didn’t. It took one moment for Michael to make that decision to drive after drinking, and it is nothing less than a lifetime of consequences he will bear. Don’t walk away – be patient. Don’t judge – it could have been you. Try not to be offended but don’t let it slide. He needs all of us to do right by him, help him to do right by us. There are many behaviors that are caused by neurological damage that may be confused with obstinance or being self -centered. A lack of abstract thinking might be more the cause – self awareness has to be re-learned.
Mike, I am so proud of you. This is not easy, but you haven’t ever made it easy have you? We are blessed with the lessons we are learning along the way and you are blessed to have the best circle of friends I have ever witnessed. As you have said so many times “blessed beyond belief”.
Friends and family – I am overwhelmed with emotion when I think of the love and support you have given us. Humbled. Grateful. Indebted. Appreciative. Unworthy. I am in love with you.
Level VII Automatic, Appropriate: Minimal Assistance for Daily Living Skills
·Consistently oriented to person and place, within highly familiar environments. Moderate assistance for orientation to time.
·Able to attend to highly familiar tasks in a non-distraction environment for at least 30 minutes with minimal assist to complete tasks.
·Minimal supervision for new learning.
·Demonstrates carry over of new learning.
·Initiates and carries out steps to complete familiar personal and household routine but has shallow recall of what he/she has been doing.
·Able to monitor accuracy and completeness of each step in routine personal and household ADLs and modify plan with minimal assistance.
·Superficial awareness of his/her condition but unaware of specific impairments and disabilities and the limits they place on his/her ability to safely, accurately and completely carry out his/her household, community, work and leisure ADLs.
·Minimal supervision for safety in routine home and community activities.
· Unrealistic planning for the future.
·Unable to think about consequences of a decision or action.
·Overestimates abilities.
·Unaware of others’ needs and feelings.
·Oppositional/uncooperative.
·Unable to recognize inappropriate social interaction behavior.
In this life/battle, my brother Nate is one of the closer people to me and not that he is the only one closest to me but this assignment was his idea, so here ya go Nate. I am the older brother and “technically” supposed to be more mature, wiser, stronger…(still stronger), leading, setting an example.
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