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.