the horizon

Wait Mike!

Our first family vacation since Mike’s accident ended, like most vacations much too quickly. We have so many family photos that we’ve taken throughout the years but some of the most memorable are those taken at the beach. There’s a certain something that comes alive in us with that combination of sun, surf and sand. Mike’s infamous (as one doctor tagged it) “Bay Watch Babe” photo was taken on a beach in Barbados.  Our pictures this trip were taken in Myrtle Beach on a trip that was long overdue and we all came away with wanting more. More time on the beach, more fun in the sun but mostly wanting more time with each other without having to deal with the stresses of daily life.  Ahhh…the beach.

The weather was unpredicatable but that made for great waves!  The water was a little on the cold side but once you got used to it, it felt soooo good.  To be truthful, I was concerned for Mike’s experience. The power of the ocean has over taken even the best of swimmers and I couldn’t help but think that Mike’s balance would be an issue. He couldn’t wait to get in the ocean and with the temperature of the water,  Nate and Bobby were not jumping up to join him.  I actually wanted to catch a few rays before getting in but it seemed like they were willing to let him go by himself and I was not. Wait up Mike!

In he went much like he had so many times before. Fearless. Not me. The waves were huge and it was cold on the belly! You know that take your breath kind of cold but as Mike plowed further and deeper into the  water I knew I needed to keep going “just in case”.  Just in case? What did I think I was going to do? I can swim but compared to Mike and Nate, I look like I’m treading water so if Mike got in trouble did I think my super powers were going to kick in?  Yes, indeed.  Go through what we’ve been through and you will totally believe that you can tame wild beasts if that’s what it takes. 

By now we’re up to waves that are well above 10 feet…without wave 5 ft with wave 10 ft…make sense? We’re both trying our best to ride one in but I am so focused on making sure Mike is still okay that my timing is off. I turn around and two waves back  looks like the Tsunami of ’95 and I’m like “Mike! Catch this wave it’s huge!”  I watch to make sure he isn’t crushed by it then glance over my shoulder and boom. Down I go with ears, mouth, eyes (seemed like all orifices) open. Not a joy ride. Not the ride that takes you to the shoreline either. This is the ride that feels like the washing machine spin cycle. I finally come up for air and no Mike.  No Mike!  AGH!!!! I see Nate coming in to the water and then I see Mike’s head. I smile, he smiles, Nate smiles. Mike tells me later that he was thrown to the bottom of the ocean and hit his head right on the top.  ”that’s it! Out of the water!”  I did say that but I was kidding and then there was another wave and well, you know….so much fun…me, Bobby, Emily, Mike and the KING of the waves Nate - Surf’s up dude!

Everyone but Sylvette enjoyed the salt water play while it lasted. Sylvette was busy getting her burn on…oh, yeah. The burn that lasted the rest of the week…she says she’ll use sunscreen from now on. Really Sylvette? Really?

The next few days would include many more firsts in this journey back to life for Michael. NASCAR till you drop.  Who doesn’t love go-carts? Maybe a guy who would have trouble getting in and out of those little cars because of mobility or balance issues but not this guy. First race – ok, I’ll admit I am a little protective but come on. So – first race and I lag behind in my car so I can make sure…yeah, that’s right so I can make sure Mike is ok…get over it! All of us are in our little cars and while we usually take no prisoners, I think this first race we might have driven more cautiously. Well, maybe just Mike and I did.  Seeing Mike’s face as we turned for the second lap you could tell he was probably feeling different than he did last time we were together at NASCAR. He didn’t quit, he kept driving and actually drove very well.  I pulled in as Mike was attempting to get out of the car and I’m glad Bobby was there to help him get out. Mike was feeling light headed and you could see his heart pounding through his shirt. His face was flushed and he was breathing very rapidly.  I could tell he enjoyed the drive but I also knew he wasn’t okay. As everyone started to gather I asked “how did it go, Mike?” he looked at me with eyes swimming and said “good. pretty good I guess, what’s next?”  He could barely stand but in the excitement I don’t think anyone else noticed. I said to him quietly “it’s ok if you need to take a break or sit down, everyone will understand”  By now, sweat was pouring from his brow and his breathing was still very rapid.  He said “maybe I would like to sit down, I feel a little dizzy.”  Was it the huge cognitive challenge of rapid fire decision making? Was it motion sickness- round and round and round the track? Was it apprehension? Panic? Who knows, maybe yes to all.  Regardless of what happened on the first track, within five minutes Michael got up and this time when he asked “what’s next?”, he meant it. 

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes, I hope one more opens,
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or dance.
Dance!

Mike  will be busier than ever beginning Monday. He was invited to join the first ever Cognitive Rehab Group through Brain Injury Services. We were told that after meeting Michael this January, the director was  so impressed by the level of his improvement since Jan. ’08 and the attitude and commitment Michael had toward continued recovery that she went to the board to express the need for additional services. Michael and a few other TBI survivors were the inspiration for the development of this program at BIS. Yeah Michael!  Thank you, Lisa.

Mike’s schedule for a few months:

Monday – 10:30 am to 12:00 pm Cognitive Rehabilitation Group sessions at BIS

Tuesday – swimming with Nate

Wednesday – 10:00 am – 12:00 pm Adjustment Group at BIS

Thursday – 11:00 pm – work with Jim at Dito Web

Friday – 10:30 pm – 12:00 pm  Cognitive Rehabilitation Individual sessions at BIS

Friday – 1:00pm – 2:00 pm Neuropsychologist sessions 

AND…today he became a PAL. Mike has joined a mentoring program through BIS where he will not only receive a PAL, he is also able to pay it forward by being a PAL himself.  He met his 19 year old PAL this afternoon and made tenative plans to play a couple rounds of putt-putt in the near future.  Mike will meet his PAL June 13th at a PAL sponsored BBQ picnic.  A couple times a month, PALS devote an afternoon to help someone else develop social skills and maybe along the way make a new friend.  Helping others open doors to hope for a brighter future. Now that’s what I’m talking about! One Love.

LIVESTRONG Michael.

xxoo

it is real

On October 23, 2007 an old friend from high school and a fellow agent in my office posted on the blog ”I have a 19 year old son and I can only imagine the impact that Michael’s accident has had on your family”. Sunday night/early Monday morning I wish it had been her imagination when she was notified that her now 20 year old, her eldest son on his way home after drinking with friends, lost his life in an alcohol related auto accident.  I spoke with Pam yesterday and she said that she talked about Michael’s accident with Trey. They watched the video slideshow, they read the posts and comments from friends and family and talked about the real consequences of getting behind the wheel of a car after drinking.  Pam kept up with Mike’s progress and made a point to share his story with her family.  Trey did not make the decision to get behind the wheel after drinking; he made the decision to ride home with one of the friends he had been drinking with.  Like many, they might have thought about the chance of getting pulled over by the police but most don’t ask  themselves in that moment “what if I die? or what if I have to live the rest of my life a shadow of my former self? Or worse – what if I kill someone?  Who asks those questions?  Each one of us should. Most don’t and the consequence of that one decision is real! Our thoughts and prayers are with the Roseberry family.

The responsibility that comes with drinking is huge and peer pressure for young men in particular is so underestimated.  Pam’s son’s life ended and the life my son knew also ended because of one bad decision. That’s all it takes to change your life and the lives of everyone around you FOREVER. It is real.

I can give you the upbeat version of the progress that Mike has made despite the profound disabilities he will have to live with for the rest of his life. That’s what you want to hear because it’s the happy ending version that let’s everybody off the hook.  It’s the happy ending that let’s you go on about your life and not think about the consequences of alcohol consumption. How being under the influence influences your perception of what is acceptable, what is right or wrong; whether it influences  your own or the behavior and decision making ability of your friends.  I will return to the happy ending updates of Michael’s miraculous and continued recovery but not today. Today I want you to know that because of alcohol’s impact on decision making processes another father is grieving, another brother is alone, another mother is mourning the loss of her son and she is unable to make it better. She cannot make it go away. Her pain is real and it will scream loud inside her but in the silence of his absence it/he will persist. An echo is what persists when the source is gone. 

Did you know that alcohol involvement is the single greatest factor in auto deaths and injuries? Only 4% of all crashes involve the use of alcohol but 41% of fatal crashes do.  Did you know that  binge drinkers are more apt to make the decision to get behind the wheel under the influence? Did you know there have been over 5000 drunk driving deaths so far in 2009? Did you know that your life matters to someone?

John Young Roseberry III “Trey” age 20 a native of Nokesville VA was killed early Monday , May 18 2009.  He was a 2006  graduate of Brentsville High School where he was an outstanding wrestler and football player. He is survived by his father  John Young Roseberry, Jr., his mother Pamela Gill Roseberry and his younger brother  Zachary. It is real.

On this Memorial Day weekend please keep in mind that the effects of alcohol and intoxicated driving are far reaching. The effects reach way beyond the number of those killed or injured.  Take care of each other – friends do not let friends drive drunk.

I am the mother of three children, one of which is an alcohol related auto accident TBI survivor and there by the Grace of God go I.

One Love.

xxoo

a new look

Jim and Mike are in the process of revamping the website…what do you think? I LOVE it! It is still a work in progress so bear with us while we work out a few of the kinks and continue to add the photos, slideshow and some new stuff to the site.  Mike has wanted to do this for awhile and thanks to Jim and a geek day today, it happened!

Good things are happening…stay tuned

little bit of this, a little bit of that

This last month has had it’s share of ups and downs but along this journey, that’s to be expected. We get stuck when where we are is not a good place and we can’t find or see our way out. Did you see the movie “Silence of the Lambs”?  Remember the scene in the movie where the girl is at the bottom of the dry well? She knows where she is and as she tries to climb her way up this impossible wall, she sees fingernails stuck in the wall where others have gone before her. Knowing that others had seen the darkness, felt the emptiness, the helplessness, the overwhelming silence and the stillness of the bottom of the well gave her strength to keep fighting. That’s where we find ourselves sometimes… at the bottom of a dark well unable to find the way out but somehow we do. No matter how dark, no matter how impossible the challenges seem, we never give up hope but we sometimes lose faith in ourselves.

We’ve had to work pretty hard at it the last couple of weeks but listening to our pastor during the Easter service, I was able to unload a lot of the burden and place it right where it belongs; in the hands of God. After all it was God that saved Michael’s life and although we lose sight of it, it was God that decided this was the road we would travel. Our pastor spoke of doubting Thomas and I related.  Thomas questioned everything and without witnessing himself, could not believe. He did not have blind faith that many of the other disciples had…I have behaved much like Thomas. I lose sight of the very thing we must have to get through this; faith. I lose faith that it will be any better than it is today. I lose faith that I can live up to what others expect of me but if I am being truthful, I lose faith that I can live up to my own expectations. I lose faith that God has a plan and although we have the freedom of choice (and yes, as a woman I thank God for the moral and political freedom of that as well), God is in control. He would not give us more than we could bear and it is within our control to choose how we stand up to the challenges placed before us.   

It is still challenging to motivate Michael to do things that are rehab related. (I should say for me to motivate him) A bit of depression, a bit of “it’s just this stage of recovery” which is good but the brunt of it takes the patience and understanding of Job (pronounced like Joe with a b for you that may not know of him), a bit of being 26 and tired of seeing his mother every day and not a bit, but a lot of anger and frustration that just being a TBI survivor brings. In May it will be a year and a half since Michael’s accident and although short term memory is still a huge barrier for him, he can remember enough to know that over the last year he’s worked harder than he’s ever worked at anything. He is exhausted (comes free with the brain injury) and as he looks ahead, he is told that for the rest of his life he must keep working to overcome the injuries to his brain. He said in one of the neuro pysch sessions that he just wants to retire from rehab. He doesn’t want to do this recovery thing anymore.  He just wants to be “normal” again.  He wants to go about life without this huge ugly reminder of the consequences of that one night, of that one horrible decision.  The mental challenges, the physical challenges, the emotional challenges are taking their toll and he just wants to be done. How does he face this enormous beast day after day and find the strength to persevere? Some days he doesn’t.

There is quite a bit going on for Michael now (although ask him, he never does anything). His involvement with brain injury services has opened doors to what we hope will be exciting things ahead. His case manager from BIS has just completed Michael’s case management plan and has scheduled a meeting for next week to make sure that this plan meets Michael’s needs and expectations. Michael will join an adjustment group for young men who have survived traumatic brain injuries. It is headed by a psychologist and meets in Springfield the first and third Wednesdays of the month. This gives Mike a chance to socialize with other young men he might be able to relate to. The constant in getting back your life after TBI is the feeling that people don’t really understand what it’s like. As a person living with a survivor, I would say he’s probably right. Brain injury is not often understood and the behaviors are often misunderstood.  Mike will also be able to take part in BIS’s Pal Program that offers a social mentoring type environment. This is designed to introduce possible challenges in the workplace and to assist in becoming more comfortable meeting new people after brain injury. It takes the comfortable old you with the uncomfortable new you learning to greet the old world on a new playing field.

In the course of a lifetime how many times do we wish for a do-over? I’ve never heard Mike say that…he accepts the consequences of his actions. He knows why he is where he is and he doesn’t try to hide behind excuses. He blames no one, he doesn’t even question why.  His comments during the down times are pretty consistent - he is sorry and he is tired. During the sermon at church yesterday the preacher said that we shouldn’t expect miracles just because we pray but if we pray, we should believe that all things we ask in prayer will be received. For the most part, my prayers are the same today as they were October 21, 2007.  I pray for strength and acceptance to handle whatever may come.  My prayer for healing is now not only for Michael but I ask for healing for our family (trauma =trauma for all) and I pray for healing for our friends who’s lives we hold very dear.   I pray for guidance … I embrace the strength I have within but I get lost sometimes.  I am working toward accepting that I can not do this all on my own. It is a process.

xxoo

awareness

Quick update… we were thrilled to meet Michael’s case manager Chris with Brain Injury Services.  The first visit was an informal “get to know ya” but I think the first impression was shared by all – this is the perfect match for Mike.  He was open to working with Mike’s Neuropsychologist, I would actually say he was delighted to work in partnership with her. Mike’s team will now include two people who specialize in helping brain injury survivors find their way.  YEAH!!!!

March is Brain Injury Awareness Month – to bring attention to the seriousness of brain injury, their focus varies each year. Ironically, 2009 is to raise awareness of sports related brain injury.

I’m sure everyone has heard of the recent untimely death of Natasha Richardson during a skiing lesson on a beginner’s slope.  Her death caused by an injury to her brain.  By all accounts, her injury was a mild head injury much less severe than the injury Michael sustained to his brain. Her death was an accident, a sports related head injury. The doctors said she might have survived if she had received immediate treatment. However, nearly four hours elapsed between her fall and the time she was seen at the hospital. She suffered from an epidural hematoma, which is often caused by a skull fracture. It can quickly produce a blood clot that puts pressure on the brain. That pressure can force the brain downward, pressing on the brain stem that controls breathing and other vital functions that keep us alive. The scary thing is you might feel fine immediately afterward because symptoms from the bleeding may take time to emerge.

For Michael – an auto accident. He suffered blunt head trauma and multiple lacerations to his head while driving home intoxicated on Interstate 66 at exit 66. The vehicle left the road at a speed in excess of 60 miles an hour, hit a guard rail at the exit, the impact propelled the Jeep forward with it’s rear flipping over the front. It landed headlights up on the right rear side, the sudden deceleration threw the Jeep forward again hitting a tree headlights down and one more bounce back to all four tires.

There were many forces that caused traumatic damage to his brain. He had three large lacerations; the temporal areas of both sides and the occipital area of the back of his head. The cerebral cortex was bruised (contused), the deep white matter suffered diffuse axonal injury when his head whip-lashed without necessarily hitting a hard object, the axons stretched so much that they were torn and damaged (sheered). Cerebral contusions at the tips of the frontal and temporal lobes where they banged up against the interior of his skull. Diffuse axonal injury occurred more toward the center of his brain where the axons were subjected to the most stretching. His brain was swelling from bruising and pooling of blood. Michael’s injuries were so severe, he was non-responsive and Code Blue upon arrival in the ER.

The outward injuries to his body were obvious but the injuries to his brain although assumed, were invisible. We were fortunate that a cab driver witnessed the accident and called for help. Blessed that the ambulance responded quickly and Fairfax Hospital was within minutes of Exit 66. Within those first critical hours, he received brain injury specific medical treatment including a craniotomy that allowed his brain to decompress. Swelling of the brain becomes dangerous when the swelling causes a rise in intracranial pressure which prevents blood from entering the skull to deliver oxygen to the brain. Because of immediate medical attention, Michael survived. It could have been so different. Worse yet, it could have been prevented.

Sports injuries however may not be as clear cut, not as easy to identify as Michael’s. Many times head injuries are very treatable if you’re aware of what the problem is and you quickly receive medical attention. Would it be horrible to think the injury to your/his/her brain could have been prevented? If only I/he/she had worn a helmet. If only he hadn’t gotten behind the wheel. I speak from my heart when unequivocally I answer, yes. Yes, it is horrible to know it could have been prevented.

Ya know, I’ve been thinking. Wearing a helmet may be like wearing a condom. Nobody “wants” to wear one but each will save your life. Put helmets on those heads.

xxoo

today – the next step

I considered purchasing a tin sign, complete with instructions that I saw in a store the other day. There was a circle in the center and “Bang Head Here” written in bold lettering. Resistance personified.  Resistance? OMG! You don’t even know but we’ll get to that later…

The next step… Michael’s intelligence still fully intact (thank you God) scoring with an above average intelligence, which is awesome but unfortunately also leads to a large measure of his frustration and honestly adds to much confusion with family and friends. Traumatic brain injury is so complicated. When your brain stores so much of the same pre-injury information how could he see the variety of cognitive impairments? How would he acknowledge the impaired memory ability, the compromised executive functioning, and decreased fine motor speed? The brain controls everything – and self assessment or the lack of, is a part of the injury.

But if we’re talking about Michael’s desire to move forward, his primary focus of going back to school, his determination to stop this “busy work” and get back to business then we should probably start at the beginning.  You see Michael is tired of this rehab stuff with me – TI ERD (that’s country for really tired).  He’s impatient, antsy, ready to move on.  He just doesn’t realize how far he’s come, or what a short distance we’ve traveled on this road to recovery. 

Remember the Glascow Coma Scale and the Rancho Los Amigos?
Glascow Coma Scale
Eye opening
4 = Spontaneously
3 = To voice
2 = To pain
1 = None

Verbal response
5 = Oriented
4 = Confused
3 = Inappropriate words
2 = Incomprehensible sounds
1 = None

Motor Response
6 = Follows commands
5 = Localizes pain
4 = Withdrawal to pain
3 = Abnormal flexion
2 = Abnormal extension
1 = None

The scale is also used to determine chances of recovery from head injury:
Mild (GCS 13-15)
Moderate (GCS 9-12)
Severe (GCS 3-8)

The Glasgow Coma Scale is the most widely used method of defining a patient’s level of consciousness and neurological status, or brain health. Michael was Code Blue on arrival with no movement, eye opening or verbal response to pain – his GCS of 3 was the lowest it could be without being dead.  He remained at a GCS of 3 for a month.  We believe that prayer and the grace of God were responsible for the miraculous healing and this second chance to live. 

During the year following his decision to get behind the wheel after drinking with friends, Michael moved his way up the GCS and on to the Rancho Los Amigos measure.  After 17 exhausting months of daily physical and cognitive training, I would love to say to Michael that he doesn’t have to work at this anymore, that I won’t push him to be everything that God intends him to be, but I can’t. A traumatic injury to the brain changes your life forever.  I won’t ever be able to say to my son “you’re healed”, “it’s done, you can relax now”.  BUT what I can say is with persistence and dedication every single day for the rest of his life, his brain can be re-trained, it can and will learn new pathways. But it will NEVER, EVER be the same.
 

Rancho Los Amigos

Today Michael probably sits between and Level VII and Level VIII

Rancho Los Amigos
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.

Level VIII Purposeful, Appropriate: Stand-By Assistance
* Consistently oriented to person, place and time.
* Independently attends to and completes familiar tasks for 1 hour in distracting environments.
* Able to recall and integrate past and recent events.
* Uses assistive memory devices to recall daily schedule, “to do” lists and record critical information for later use with stand-by assistance.
* Initiates and carries out steps to complete familiar personal, household, community, work and leisure routines with stand-by assistance and can modify the plan when needed with minimal assistance.
* Requires no assistance once new tasks/activities are learned.
* Aware of and acknowledges impairments and disabilities when they interfere with task completion but requires stand-by assistance to take appropriate corrective action.
* Thinks about consequences of a decision or action with minimal assistance.
* Overestimates or underestimates abilities.
* Acknowledges others’ needs and feelings and responds appropriately with minimal assistance.
* Depressed.
* Irritable.
* Low frustration tolerance/easily angered.
* Argumentative.
* Self-centered.
* Uncharacteristically dependent/independent.
* Able to recognize and acknowledge inappropriate social interaction behavior while it is occurring and takes corrective action with minimal assistance.

The next step is to continue training, continue rebuilding, continue setting daily goals that lead to achieving weekly goals that build the new foundation for the future. Michael’s hopes and dreams for his future are not so different than they were pre-accident.  But the road he’ll travel to get there is profoundly different. He wants to be a leader, he wants to have a lifetime of learning which equates to getting back into the class room every now and then, he dreams of having someone by his side for love and companionship, he hopes to have children, he wants a life. He wants to be the driver of that life, not the passenger. 

The only limitation I see for Michael is him getting in the way of himself; concrete rigid thinking and stubborness.  And Michael knows that no matter how difficult it gets, I am there to push him through the concrete. He will not have an easy time of getting in the way of himself.  My prayer is that his and all of our hopes and dreams come true. This is what we’re doing to get there:

Michael is rebuilding with tools for life after and with a brain injury.  He meets with a neuro-pyschologist on a weekly basis and together they are developing plans for Michael to take control of his own recovery.  Does that mean he does it alone?  No, it means ultimately he is in control with the understanding that needing help, doesn’t mean you are helpless. Together they are building a base of strategies for success to compensate for cognitive losses that may or may not return.  A very positive hour that also allows Michael to share and to work through his frustrations and concerns with a professional. Someone outside the family who has the knowledge and experience to light the way when all we see is darkness.

Michael’s application has been accepted and he has been assigned a case manager through Brain Injury Services.  The first official meeting is this coming Tuesday (St. Patty’s Day) when we will learn about social activities, cognitive therapy and perhaps even vocational training.  We are looking forward to opening many more doors with BIS and hopeful that this will assist Michael in his journey forward. We welcome their assistance.

We greatly appreciate the recent order for physical therapy from Michael’s primary care physician.  She will work with him to improve his gait and to strengthen his prior dominant right side so it will take over for his now dominant left side. 

From my perspective, as his mother and TBI caregiver this is more than a bumpy ride. It is emotionally draining, physically exhausting and (remember the tin sign?) often times very frustrating. The bridge connecting my relevance to Michael’s rehabilitation efforts are increasingly lost with him. Each day he is less likely to actively participate in our cognitive exercises and some days refusing to participate altogether. It’s a very tough place to be emotionally even for him, but we’ll get through it.  I do respect the fact that Michael is exerting his independence again and I am thrilled that he has reached this level of recovery.  I understand that I am the constant reminder (the general he jokes) and sometimes he just doesn’t want to be reminded of what needs to be done. Sometimes he just want to be a normal twenty six year old guy, wanting to get on with his “normal” life. 

The next step… one foot in front of the other,  breathing in, breathing out, one step at a time, one day at a time.  We persist. 

LIVESTRONG Michael

xxoo

the truth

Some truths of traumatic brain injury…
The unpredictable memory loss that comes and goes—one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss – an ambiguous loss. Unlike death, there is no closure, no official validation, and unless you are the survivor or live with the survivor you really don’t know what it’s like. You may have done a little research and feel like you know – the truth is, you don’t.

After a year you would think that I probably more than anyone, would understand the tremendous impact that short term memory loss has on a person’s life. I thought I did too but the truth is, I didn’t. Watching Mike digress over the last month has allowed doubt, confusion, helplessness and hopelessness to affect my ability to deal with his injuries.  I don’t know the Mike that wants to give up and it has been difficult to stay positive…it is painful, it hurts to see him so tired of trying. I keep my emotions in check most of the time but one morning after he couldn’t take our rehab routine more than 8 minutes, I had a ”come to Jesus” meeting with him. We talked (I talked mostly) for about 45 minutes.  We talked about how far he’s come in this last year; learning to feed himself, learning to walk, navigating a computer again, etc, etc, etc… we shared feelings, we made new commitments to each other and based on the conversation, Mike was there. He knew he needed to be present, he knew he wasn’t done, he was ready.

Later that afternoon when we were going over the events of the day I made reference to something he said that morning.  He looked at me puzzled and said “I don’t know what you mean, what are you talking about?” I reminded him of our conversation that morning and gave him cues to help him retrieve the memory. Nothing. He had nothing. And then it hit me…Oh, my God, what it must be like to not remember what just happened.  How that must feel…how do you get through the day and have a sense of accomplishment? Ask Mike any day, any time what he’s doing…he’ll answer “nothing, just sitting here at my house”. It finally clicked with me.  He doesn’t realize how much work we put in to his recovery, he doesn’t know how amazing his recovery has been because he doesn’t remember how he was this morning, much less how he was last month or last year.

We diet, lose a few pounds and we start to feel good. Energized by remembering how we felt before we began seeing progress. We can see the end in sight, our hard work is paying off. Our memory allows us to measure success, what we looked like, how we felt but Mike doesn’t have that ability to measure success, he can’t remember. No wonder depression rears it’s ugly head after a brain injury.

The truth. The journey recovering from brain injury doesn’t get easier, I thought it would somehow. Mike had a neuro psych test during this past summer and during the review the neuro psychologist told us that the nature of Mike’s brain injury would result in a loss of friendships. He said the ramifications of that void would greatly effect Mike and we should be prepared for bouts of depression. Mike’s attitude had always been so positive, he was determined and driven, I couldn’t imagine that was just around the bend. There were quite a few details of that review I didn’t agree with or believe and this was one. I knew these friends, I knew how strong they were bonded, I knew they would not abandon Michael when he needed them most.

The truth - I believe in my heart that what was written to Michael on this blog was the truth, that everyone that visited him in the hospital truly cared about him, that there was truth in the hopes and prayers for his recovery. But I am finding this is also the truth; survivors do see changes in their relationships after the injury. They may not hear much from friends and previous co-workers and feel alone. Michael is feeling the change, feeling the void – Michael, I know you’re going to be upset so let me apologize for posting this but I think it’s important to share. These are some of the things Michael has said to me…

“I don’t know what to talk about – I’m not working, I can’t drive, I’m not hanging out anymore and it makes it hard to know what to say. It’s easier just to be by myself. Nobody has any idea what I am going through. They don’t understand how hard this is or how hard I try. I’m tired. I don’t want to sound like a &@%%#! or weird, “I’m lonely, can I go hang out with you? I wish you would call me?”…I’m not going to say that Mom.”

One of his closest friends stopped by the other day.  Mike was so excited about him coming over but I watched as Mike struggled to stay in the moment, a challenge not to retreat. When his friend left, Mike said “I thanked him for coming over, do you think he knew I appreciated it?” Brain injury is forever and Mike is forever changed. Old friends may feel uncomfortable…they may not know what to say, how to act, or how to help. It may be harder for them to relate to Mike – the same in many ways, but an injury to the brain changes who we are. He inhabits the body, he shares the history but he is not the friend they knew. It’s complicated. This is uncharted territory for all of us…it’s no one’s fault. The truth is they haven’t turned their backs on him. The core friends reach out, they call when they can, they come over when they can, they try and they feel the loss just like I do. It is not easy but we ALL give what we CAN.

With the frontal lobe damage Mike sees only how matters relate to himself unless you bring it to his attention. Most of the time he’s not aware of how his actions and words effect others. When he does spend time with someone, he doesn’t realize that keeping his face locked on his phone or computer, not participating in or initiating conversation might be viewed as anti-social or perceived as though it didn’t matter if they were there or not. He knows how happy he is to spend time with them and he believes people know that it means alot without having to say a word. He says “mom, we’re not girls!”

That same frontal lobe injury also causes a lack of awareness about impairments. Over time this gets better but is this increased insight possibly creating a negative reaction to the new “self?” Possibly. I know the change in awareness is a positive sign of improvement, but dealing with it emotionally can be quite challenging.

The truth? Michael injured just about every part of his brain; the cerebellum, the pons area of his brain stem, the occipital lobe, the parietal lobes, and the very important frontal lobes. He not only survived these devastating injuries, he has recovered more function in this one year than anyone thought possible. I don’t ever forget how far we’ve come…I thank God for giving us such a wonderful loving support group, and for giving us the strength and where with all to handle this trauma with grace and dignity.

The truth? Recovery is a continuous evolution of change and adaptation with the ever-present tug to slip into the denial mode of expecting life to be as it used to be.

It’s going to be ok.

xxoo

prayers answered

If you pray for us, thank you. 

Brain Injury Services finally made contact and we have an appointment for a home visit at the end of the month.  They make no promises for a case manager but this is the first sign of hope for their assistance since their initial visit last January. 

We have an appointment with a neuropsychologist on Friday. This doctor was previously the staff neuropsychologist for the Bridge Program at Mt. Vernon Rehab. Her primary focus has been on brain injury and she comes highly recommended.  From my perspective, Michael’s continued recovery now requires the assistance, guidance and skill of trained professionals. 

Tomorrow we have an appointment with Michael’s Physiatrist at Mt. Vernon Rehab.  During that appointment Michael will have all his current medications checked to make sure that we are optimizing pharmasuitacles . Interestingly enough while we were waiting to see the neuro-opthamologist, I picked up a magazine to browse through and ran across an article “Common Drugs May Cause Cognitive Problems”.  I begin reading about anticholinergic drugs.  Yeah, don’t feel bad I had no idea either.

Middle of December, just before Mike left to go on the trip to Florida, I noticed that his memory was beginning to slip.  Hard to measure at times but for the last few months I could tell that the degree of memory, the ability to lay down new memory was improving.  He would remember what he couldn’t hang on to before.  He could read the “daily” and be able to give details about the reading five minutes later, an hour later and at times even that evening and beyond. The Intellectual Devotional that Mike reads everyday after breakfast, he reads to himself sitting at the table. After the first read, he’ll read out loud to me or I’ll read to him, we discuss the subject and then he takes notes (with help) on the information that he might need to remember if he were taking a class. Mike would eventually like to return to school.

Ok, so I noticed there was a decline in short term memory and I noticed that he wasn’t laying down new memory that is key to learning new information.  Our exercise routine was interrupted around the Thanksgiving holiday and never really got back on track.  He was going to Florida, there was Christmas…we all fall into it, we’re really just making excuses but they’re good excuses right? So I’m thinking maybe it’s the lack of exercise, maybe this is the plateau we’ve been running from… but sitting in Dr. Snyder’s office, I read about what may have happened.

Mike clears his throat a lot.  Sinus drainage? A new habit? We made an appointment with his primary care and he said Mike’s ears were full, his sinuses were full almost to the point of infection.  He explained that the post nasal drip would cause mike to clear his throat even when he didn’t realize his sinuses were draining.  Mike is also belching quite a bit, he seems like he takes in  alot of air but the Dr. said that the two may go hand in hand. Draining sinuses possibly = reflux.  Along with the new allergy med, he prescribed pantoprazole to reduce the amount of acid produced in Mike’s stomach.

I read the article, started putting the time frames together (memory/cognitive stall and the new meds), pulled up a few sites on the web and low and behold, pantoprazole is an anticholinergic drug.  Although Michael’s belching did improve with the pantoprazole, he hasn’t taken one pill from the bottle since that day.

Our family physician is one of the best doctors we’ve ever had.  I guess the lesson is no matter how capable your doctor is, no matter how much you trust them, you have to be your own advocate.  Research the diagnosis, research and cross check your prescribed medications – it worked for us. 

How’s Mike doing? Well, as of Monday he is the COO of his own company.  A purpose driven life – a different approach might get us past the lack of drive to continue the long hard course. Mike wants to drive, he wants to continue his education, he wants to work but he was losing the energy and focus to make it happen.  We talked about purpose – he needed to understand his role in rehabilitating his brain. He said he and Karl had always talked about starting a company together and based on the list of things that he is in charge of now, he said he was reconstructing, rebuilding his life. He claimed his role as COO and named his company Build It Back Construction.  He elected himself the chief operating officer in his own construction company- Mike needed to understand his importance, his purpose.  He needed to identify his purpose.  Mike helped Charlie put together a recruiting company from the ground up.  He understands the commitment, the hours of the building the foundation brick by brick and pushing himself even when progress seems as though there’s none at all.  Showing up for work each day and giving it your all is vital to the success of the company.  The most important role of his life is as COO of Building It Back (rehabilitating his brain) and now he can wrap his head around a role of responsibility that he can be proud of.  A reason  – the success of his own company depends on him now.  OBTW, I am CEO, Bobby is CFO and Nathan is his spiritual advisor, Sylvette’s and Emily’s roles  have yet TBD – a little challenge to those non texters  

We’re setting realistic goals each day and we’re building to achieve weekly goals, monthly goals.  He selects a skill that needs honing or maybe one that was lost so we’re starting from the beginning.  I reminded him that surviving the brain injury was just the beginning.  He started from nothing and had to learn to feed himself again, he re-learned to walk, re-learned to read and to write, re-learned to feed and dress himself.  He can do this, the success of his company depends on it.  We have big plans – we’re going to be more proactive – we’re going to reach out and we’re going to accomplish big things.  It’s going to be a great year – stay tuned! 

xxoo

a new year

A new year, and our last year so to speak.  We’ve been told and from what I’ve learned through research is that there is a two year window to rehabilitate Michael’s brain.  Year one is over and we are beginning year two toward recovery. He is resisting. 

It’s never been easy for me to write, it doesn’t come naturally but I’ve found that it helps. It all began with Nate’s desire to keep everyone up to date with Michael’s progress during the days when it was very difficult to speak.  We will forever be indebted to Jim McNelis for this wonderful instrument of communication that he appropriately named we luv mike.  Bobby was able to post medical updates for family and friends across the world within days of Michael’s accident.  Many times Bobby was able to post real time information through either his laptop or the computer in the hospital library.  This website allowed many of you sit with us in a virtual waiting room…praying with us and hoping that God would spare Michael’s life.  You knew when his temperature spiked, when his blood pressure soared to dangerous levels and you felt the roller coaster of emotion as his life hung in the balance. Within a couple of weeks Bobby had to travel out of town on a business trip and when he said it would be my job, I remember saying that I did not want to be the one to write.  I could not be the one to do the updates.  I resisted.

The first day to update was difficult but almost immediately I found strength in the release of emotion.  Every tear-filled post allowed me to open my broken heart without having to speak.  Your response and postings to Michael wrapped around me like the wings of angels and I found endless comfort in your love for my son, for our family. An affirmation of sorts that we were all going to be okay.  The days of feeling like I was not the one to give updates are long gone but the difficulty of writing has not waivered. Difficult yes, but it is an honor and a pleasure to share Michael’s progress with you. The difficulty now lies in detailing this journey without dishonoring the subject.  

Folks, Michael still reads the blog every day. There is a new discovery each time he reads, even if he has read it a couple of times before, there’s a pretty good chance it will still seem like a new discovery.  He reads what I post (hello Michael) and he reads over the hundreds of ”We Love Mike” comments each and every day.  In those days that he could not hear you,  you spoke from your heart through this website in hopes that one day he would be able to read your words and understand their meaning. He is reading and understanding the power behind the hope you had for his recovery and the belief in his strength to persevere.

There are times that the challenges that lie ahead seem insurmountable but there has never been a day, not one moment that I have considered giving up or giving in.  It is a process. Minute by minute, hour by hour, day by day, week by week, month by month and now year to year, I place one foot in front of the other, I try to remember to breathe in and breathe out.  I will not give up on pushing Michael to re-train every ounce of injured brain that God is willing to let him recover. 

Resistance. “I don’t need your help” comes partly from the injury to the frontal lobes and right hemisphere.  An altered self awareness that protects the psyche but distorts ability.  I think the confusion lies in the two roles I play – therapist and mother. I am his mother and no self-respecting twenty six year old wants to be over mothered.  I am also Nathan’s mother and Emily’s mother and Bobby’s wife.  I am an auntie, I am a daughter of aging parents, I’m a sister and I am a Realtor. But I ask each morning ”what can I do today to help Michael recover? What can I do to make sure the healing continues?”  How do I say that the most important role I play each day is Michael’s therapist?  I say it knowing that although the future of our tomorrows are unknown, the two year window for recovering from a brain injury is a known fact. I’m working with the known and we only have this year left. 

Michael is beginning to resent some of the things I do, some of the “busy work” as he calls it.  He doesn’t always like the reminders. or the worksheets, or the note taking and will even push off working out.  We have “talks” about why we do what we do but understanding the purpose is short lived. Michael, don’t give up on yourself.  You’ve never been okay with being anything less than everything you could be. There’s always been a competition. Don’t settle. Get mad, be stubborn, it doesn’t matter. I’m not giving up on you. Don’t resist…you’re not done. We have 2009 and 2009 is going to be fine. Linda said so.

One Love

xxoo

p.s. Michael’s day began on the upside with a visit to the dentist - still no cavities! Then a neuro -opthamologist appointment that ended with a thumbs up but on our way home, we got word that his health insurance will end in April. 

As of April 2009 all doctors visits and all prescriptions will be paid out of pocket. The qualifier for applying for Medicaid after a brain injury begins 6 months after the disability occured plus two years. 

and giving a nod

Mike would remember Christmas 2008 and with God’s blessing will continue to make new memories.  Our celebration would bring what will now be a new Christmas tradition of baking, cooking and passing down family recipes on Christmas Eve.  We were fortunate to have both of my parents with us for the holiday so Christmas Eve was spent in the kitchen with my mother, Grandma Nana.  Michael, Nathan, Emily and Sylvette learned the art of making old fashioned fudge and the secrets of baking the best Hello Dollies ever! We made sugar cookie dough, rolled it with a rolling pin and then with the cutters they used as kids, pressed their favorites – Christmas trees, candy canes, trains, birds, holly and snowmen. We made icing and decorated our works of art with colored sugar, sparkles and sprinkles.  There were chocolate chips, peanut butter, chopped nuts, pounds of butter, sugar and flour all over the kitchen – the ingredients for so much more than sweets. These were ingredients to store in our book of Christmas memories forever.   

All too often we forget what value lies in simplicity. A sign of our times, not necessarily a sign of who we are as people.  The best gift we can ever give is our time and guaranteed it is what we will miss the most.  A Christmas without her Mother, the daughter won’t miss that video game, those new Ugg boots, that new Coach purse but she will miss her Mom.  The Father won’t miss that tie, those new cuff-links but he will miss the son when he is no longer there. As much as we think our families need all the “stuff”…they need us, they want stuff. There’s nothing like losing or almost losing a loved one that makes you realize that stuff is really just stuff. Doesn’t matter how you try to fill the void, how much stuff you put under the tree – it’s still just stuff.  Be there. Really be there…it might make a difference to someone you love.

We had plenty of gifts under the tree – probably as many as we’ve always had but it was different – we were changed. It wasn’t about opening presents – it was the excitement of being so “in the moment”. We were never more in “the now”.  We savoured the moments…we took our time and didn’t open gifts all at once…the twelve days of Christmas was our cue. I would begin the song “on the first day of Christmas my true love gave to me…” then we would race to the tree to find a gift with our name on it and while the oven timer ticked away the minutes we would have time to open two maybe three then back to the kitchen to make more cookies and more memories with Grandma. My mother happened to be “five golden rings” so the middle was always dramatic.  We never did get all the numbers connected with the ”lords a leaping” or “drummers drumming” but the laughter that sounded was just right and so much more fun! Santa comes to our neighborhood between 8 and 9 pm and one of the highlights of the evening was watching my Mother jump up and down waving at Santa as he passed our house on a fire truck. Papaw told us stories, oh maybe quite a few and as the years have turned his full head of hair white, I couldn’t help but notice the visual resemblance to Old Saint Nick.

His eyes-how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow.

Last year when we arrived at Mt.Vernon Hospital to spend Christmas day with Michael, he had no memory of spending Christmas Eve with us.  He didn’t remember. No memory that one friend had been there, much less how many. He didn’t remember that he opened gifts and spent hours in the family waiting room with his “Brady bunch” family. He didn’t remember.  I could tell when I saw him seated at the nurses station that morning that something was wrong. The head nurse said Mike had been a quite emotional before we got there, thinking that he was there alone with no family or friends for Christmas. They tried to tell him we had been there the day before but he had no memory of it.   

Not everyone believes the way we do and that’s ok.  But for us, a bright shining star led the way to Bethlehem where in a small stable Jesus Christ was born. So on Christmas Day we celebrate a birth – we celebrate life.  Although December 25 is the day we celebrate the birth of Jesus, since the 18th Century there have been arguments that December 25 was chosen to correspond with the Winter Solstice or perhaps it was 9 months after the supposed date of conception, March 25- who knows.  As history is recorded it is left to the interpretation of the writer and it seems with every interpretation another group has a different platform to solidify their case. No one really knows for sure, one can only believe. 

We believe.

We would all remember Christmas 2008.

xxoo

On Christmas Eve, Mike’s very good friend Matt lost his beloved grandfather.  Matt lost his father earlier this year.  Rest in Peace Charlie Cornwell.