treading water

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.

LIVESTRONG Michael.

xxoo