storm brewing?

There is anger beneath the surface that shows its ugly face to Emily.  No kind words, no smiles, no love or affection, just an aggressive intolerance for her existence.  She is so happy to have Michael home, so happy that he is alive and recovering and she is amazingly understanding when the hurtful comments from him are aimed at her and only her.  

We know about opinions…here’s mine.  Mike always the big, tough older brother now needs assistance with daily living and Emily the doting younger sister would wait on him hand and foot if allowed.  He glares at her, speaks down to her and for some reason it is constant at the dinner table.  With goodness at heart, I think Emily’s nurturing demeanor may threaten Mike’s masculinity. 

 I think he needs to show her that he’s still the tough guy. He doesn’t want her to think of or see him as weak.  It is like a switch that turns on and off when she is in his visual field.  He looks at her; he is a hard, cold thunder storm.  He looks away and his face softens; the tone in his voice changes and he is a warm, gentle rain.  I waste no time halting this behavior and speak to him about it even when Emily is not with us but this underlying anger concerns me.  Is my “tough guy” theory correct or is there an angry storm brewing?

Michael was in a car accident.  It was a horrifying night that left my son with traumatic brain injuries and changed all of our lives forever.  The darkness of October 21st, 2007 is over as we look forward to better days ahead.  “Change” is a Tracy Chapman song that touched me the moment I heard it.  Certain songs immediately bring images of a familiar face or a time in your life and ”Change” always had that effect for me bringing a face to mind until now…now when I listen, I see your face.  I don’t want another family to feel the wound so deep that three months out you still can’t sleep, you still weep, you still mourn for “what could have been” for your child…you can’t imagine, you really can’t.

I cannot have doubts that a full recovery is where these baby steps lead because the slightest doubt washes away my faith.  My faith that miracles happen and that we are in the midst.  My faith that prayers are answered.  My belief that there was a reason his life was saved and that God has a plan for Michael.  We’ve heard that some families don’t rise to the challenge, don’t have the courage, the patience or the understanding to go the distance.   

The true test for us is long term but we are now as we have always been – solid, determined believers in unconditional love, trust and compassion.  Life is full of experiences you don’t expect, we walk by faith. 

week 3 at home

I never really know when I’ll get to post what I write.  It’s usually a couple of day’s worth of a minute here or there.  Mike is still charting high heart rate and blood pressure so as we await the OT for lunch, we took a few minutes for deep breathing and relaxation.  For me, a chance to write.

Since the accident, our relationships have been altered, our roles have changed and the Michael we knew is a memory.  The essence of Mike is still the same but for now, a passivity of sorts prevails.  The fragmented memory, the visual deficits, the physical changes and the mental clouding seem to pick away at the fire inside and he is uncritically accepting of his experience.  Not the Mike we know.  Michael was the typical first born “Type A”, always pushing, wanting and needing to be the best, look the best, date the best, wear the best, but never really understanding the self imposed pressure or what toll “the best” would take.   

The two brothers have always been different, yet alike in many ways.   Both loving and affectionate, both witty, intelligent, smooth talkers, just on different planes.   Nate the artist taking the safer scenic route, Mike the risk taker in the fast lane.  As our family evolves and we adjust to the changing course, Nathan who often looked to Mike to light the way, must now take the lead and become the light for his brother.  

Nathan writes when he can and every now and then leaves a journal at the house.  He has given me permission to read through his works, so I have the extreme privilege of seeing the inner most thoughts of this genius writer.  I’ve asked him on many occasions to share the poetry relating to his experiences with Michael but as with most artists, the standards Nate places on what he is willing to share is much greater than someone like me.  I not a writer.  I’m just the messenger. 

I’ll still work on getting the ok from Nate but for now, check out his new posting under “By Nate”.  Sitting on the couch visiting with Michael last night, Nathan spoke from the heart the way he does best…with rhythm and rhyme.

The third week at home draws us closer to real life, closer to the reality of the long term effects of TBI.  Sometimes the mind and body protect the soul, but Mike really has no awareness of the depth of the brain injuries he sustained.  Perhaps without the perceived limitations of TBI he is able to see the end in sight, make progress in learning how to learn, and accumulating the all those “normal” skills that are no longer coming naturally to him.  

Started this on Thursday, it is now Monday.  Mike did 10 push ups today!  He started on his knees for the first one and then his body took over the form it knew so well.  Up on his toes and he pumped out the other 9.  His arms shook, his face and neck pumped full of blood but that boy did 10 push-ups today.  His brain has convinced him that his right side is weak and cannot be trusted.  These push-ups today spoke louder than his brain and the two sides worked equally moving the weight of his body up and down, down and up 10 times.  Ten may not sound like alot but ten full body push-ups at this stage is huge.  Can you do 10 full body push-ups?

I sit here tonight listening to two of the loves of my life engage in conversation with perfect rhythm, feeding off each other.  Their dialogue witty and eloquent, their timing seamless and their hilarious banter make even the weakest jokes work.  Their love is like no other… I am so proud to be their mother.

Tuesday the 29th – Today Mike had a follow up appointment with Dr. Jebraili, his Neurosurgeon.  “OMG, who is the patient?   I asked my nurse, did he walk in here?  Is he talking?  Mike, I tell everyone, YOU are my miracle patient!”   When a neurosurgeon says you’re a miracle patient, it holds weight.

Mike also took a trip today to INOVA Fairfax Trauma ICU  and walked in to see the nurses and techs that took such wonderful loving care of him.  After ”wow! “, “amazing!”, “I can’t believe it!” and photos, we were off to the third floor to see the staff there and in the Neuro Observation Unit.  There were tears and more photos and it felt good to see how Michael and his progress touched them.  The hard work, the love and dedication of the medical staff at Fairfax Hospital will never be forgotten.  I’m sure they don’t often get a chance to see the results of their labor so it was a joy to walk in with Michael and to have the opportunity to say “thanks”.

I say it in the morning, I say it through out the day, it is something I can’t say enough…thank you, thank you, thank you.  To God, to the healers, to you…thank you.

Site Visitors by City

That cluster map thing is cool. I have a similar service called Google Analytics running in the background on this site as well. It gives me a lot more information about site traffic, including the locations of visitors just like the cluster map. I wanted to share a map that gives a little more detail about the site traffic, so here it is:

Detailed Visitor Map

hello world

thank you for your support and for keeping me in your prayers. when i see all of your comments on the blog i feel energized. reading all of your words takes me to places i cant go right now because i am so restricted. in a way its like being in jail. kind of. sometimes its hard to think of what to say but what i have learned is that life is short and there are no guarantees it is hard to remember how i feel sometimes but if you ask how i feel about my recovery i feel like a bull. as long as everyone has hope it keeps me alive. i really do mean keep hope alive it is my slogan

The oatmeal challenge

The day began with “what would you like for breakfast?” –  ”I think oatmeal would be good” Mike said.   I suprised him with “ok, have at it.  I’m going to grab some coffee while you make your oatmeal”.  This was a huge challenge for Michael.   The steps went well; the oatmeal, the bowl, the measuring cup to fill with water and then to the microwave.  I’ve watched Mike make oatmeal before and it pretty much went like it would have before, just took alot more planning.  The measuring cup was a pyrex 2 cup and he filled it all the way up.  “Mike, do you think you’ll need 2 cups of water?”   No, probably not”  but he continued to fill it up anyway….he couldn’t stop.  but it was ok.  Without asking any questions, he pushed the quick cook #2 and the microwave started.   The water boils and I get nervous.  mike opens the door and heads to the counter with the boiling water….and just as I thought, begins to pour the entire 2 cups into the bowl.  I intercept and ask if he wants to keep pouring.  mike starts to laugh and says “help I’m pouring and I can’t stop”.   It was funny but in all seriousness, making the oatmeal wore him out.   

The cognitive difficulties will have the most significant impact for regaining Mike’s independence but you can see that his brain is finding new pathways.  So with repeated stimulation through practice and retraining, mike’s planning and sequencing skills will continue to gain strength.  ”A journey a thousand miles begins with a single step”.

Today this 23rd day of January was a huge day for Mike.  We began the day with the oatmeal challenge and then moved on to the computer.  This morning as Mike and I were going over the calendar, I asked if he felt like looking at the website and checking the comments.  He said “sure’.  I pulled up the site and Mike read the last 18 comments out loud to me.  When we finished he said that he would like to email Jimmy to say “thanks”.  He then followed with “I think should probably thank Amanda and Steph too”. I explained that he had a couple of options if he wanted to send a message via the Internet.  He could email them from Gmail, he could post something on his My Space and then he said that he couldn’t log in because he didn’t have a user name or password.  I told him that I knew his password for Gmail and that we could probably figure out the My Space account.  He said he was talking about the blog.  That he would like to say something there.

I quickly sent Jimmy an email asking if he could set Michael up with a user name and password.  Jimmy came through with the goods within minutes and Mike was able to log in and begin to put his thoughts to the test.  I’ll back up a little – after he read the comments from the blog to me, we also looked at the cluster map and talked about how the entire world was following his progress.  After Mike logged in, I asked him if he had anything in mind that he would like to say.  He said “yes, hello world”.  The rest of the post took him about 15 minutes to put together and he really put quit a bit of thought into what he wanted to say. 

It was amazing to see him go through the process of getting thoughts together.  He was fidgety, he rubbed his head where the bone flap incision was during the thinking time in and the result was the huge message he was able to post.  He spoke, I wrote.  He wanted to type it himself and tried at first but the keyboard proved to be too confusing and he couldn’t navigate the keys for more than a minute at a time.  I told him we could either take a break or I could type it for him.  He opted for me typing so I continued as he had started.  no capitals, not too much spacing and spell check was invaluable for the first few lines he typed himself.  He was so proud of himself.  You could tell he felt re-connected to the friends he loves so much.

I laughed out loud when he said “I really mean keep hope alive, it is my slogan “. I asked him if he knew who originally said Keep Hope Alive, Mike said that he did.  I said, “no…I mean like whose slogan is it?”  He said “it’s mine”.  He didn’t believe me when I said it was Jesse Jackson.  I’m still not sure he believes me…

CRS

You know what that means right?  I have a bad case of it.   Mike reminds me all the time that he’s not the only one with short term memory loss.   Just a quick note to all the people that don’t get returned phone calls…please don’t take it personal.  It’s not you.   It’s me.

I’ve been working on a photo album that I hope to share with you.  In the next day or so I’ll work with jimmy to see if we can link it to the site.  I know new photos will mean so much and especially to those of you that are miles away.  xxoo my lovely.

Michael has been working on his penmanship to help accomplish our goal of sending out the long over-due list of thank you cards.   Not that you could ever tell what Mike’s name was by his signature before (and you still can’t), but that signature will be his none the less.  

The last couple of days when Michael starts to get tired toward evening, he gets giddy.  He’s always had a great sense of humor but now you can see and hear it coming.  The laughter starts before he can even get the words out, so watching him try to speak and deep belly laugh at the same time, is priceless.  We’re having so much fun – I only wish he could remember…

I see glimpes of doubt,  twinges of sadness but for the most part his spirit is positive and he is determined to conquer.  With heads held high, you look forward and you don’t look back.   Michael said last week that “this is the new Mike”…how many people get the chance to re-invent themselves? 

We don’t really talk about the length of recovery or the prognosis, we just talk about the incredible strength he has, how wonderfully far he’s come and about how blessed we are.  No matter how bumpy the ride, it is an honor to be a part of this miraculous journey with him.

xxoo

week 2 at home

As the second week home comes to an end, we’re settling into a comfortable routine and realizing once again, that there aren’t enough hours in the day.   Between waking, showering, dressing, grooming, eating, medicating and greeting the daily calendar, there is preparation for morning therapy.   Morning therapy comes and goes, then lunch, rest, therapy, therapy, rest, dinner or maybe it’s therapy, lunch, therapy, therapy, dinner, with no rest until bed time.  

Although routine is important for Michael’s recovery, the nature of the in-home therapy beast is that there is no way to secure a solid daily routine.  We typically don’t get the therapists schedule until the evening before or the morning of, so most times you have no idea what the next day will bring.  The day is never the same.  Outside of that, our own personal routine is the same.  Mike wakes up around the same time every day and until the first therapist arrives, we are pushing and reaching toward recovering his independence.    

The fatigue that follows a mental workout is often more tiring than the physical.   The physical fatigue from muscle weakness usually improves after a good night’s sleep or with a little rest but it’s different if Mike’s fatigue comes from psychological or mental stresses.  An extra workout or increasing physically activity will sometimes help to aleviate the mental and emotional fatigue, but not always.  There are times when the traumatic injury to his brain consumes all of Mike’s energy and he battles fatigue the entire day.

Mike’s vitals were always in check while at Mt. Vernon but we can’t say the same since the return home.  Each therapist is required to check his blood pressure and heart rate prior to the start of their session so we get a reading a couple if not three times a day.  Consistently and with no difference between PT, OT or Speech, Mike’s blood pressure has been 140/90, 138/89, 136/90 with a heart rate up to 120.   An increase in psychological stress may be the culprit.

You would think that the home environment would be more comforting and indeed it may be, but Mike’s visit with his primary care doctor on Friday brought new light to the change in his vitals.  Mike was in a coma for just about a month and awoke (or was reborn as I like to call it) at Fairfax Hospital.  The three very controlled environments at the hospital were set up for healing with a focus on brain injury.  Then on 11/21/07 he was taken to Mt. Vernon Rehab Center on the very controlled 5th floor where the environment is specifically designed for brain injury recovery and rehabilitation.  On the 4th of January, he gloriously returned home. 

Our home is loving, warm, comforting and focused on a positive take on life but sensory stimulation is not controlled and most times, out of control.  The telephone rings, someone knocks or rings the doorbell; the dogs bark and whine, people stop by, the morning news squawks on the television, and then add new therapists to the mix.  We mean well and Lord knows that I am a constant thorn in the side of the rest of the family.  With pleads of (I think they call it nagging) ….”turn down the volume/ speak quietly/calm down/put the dogs outside/there’s too much going on”, they say I over-protect.  I say, they’re too hyper.  We try. 

His doctor asked us to log his blood pressure and heart rate throughout the day for the next two weeks to see if there’s an increase only when the therapist visit.  So far and thank God, that’s what we’ve seen.  

Speech Therapy - Erin was excited about his progress over the last week as she discovered the pathway to his undivided attention.  Simply remove the distractions, including Mom.  While not speaking, I try to stay close enough to keep on top of their techniques and to monitor his progress myself but the slightest distraction takes Mike away from the task at hand.  For the sake of progress, I now move to another room when they begin the session.  As I have said all along, Mike’s journey back to life is a learning experience for all of us.

OT/Cognitive progress – You must be able to master sequencing and problem solving if you want to hold down a job.  If you want to be on track to purchase a yacht one day so Mom no longer gets the bowl, the cereal, the milk, the spoon – Mike needs and wants to do it himself.  So, last Wednesday when I asked Mike what he wanted for breakfast the answer was cereal.  It’s been years since Mike has lived at home but with weekly visits for a home cooked meal, he was no stranger to the house and certainly no stranger to the kitchen. 

Armed with renewed motivation, I say ” ok, you’re on your own.  I’m here if you need me but only if you really need help”.   Mike went straight to the pantry, pulled out the cereal and placed in on the island.  He opened the box and tilted the box as if to pour and about mid turn, said “I need a bowl”.  He returned to the pantry, no bowls there.  Mike knows this kitchen but he began to open every cabinet door within reach.  No bowl.  He opened the fridge, no bowl.  He returned to the island and picked up the box of cereal again.  “I need a bowl” he said out loud but to himself.  He then looked at me “I need help”.  I wait a moment and then answer, “Michael, look at me.  You KNOW where the bowls are.  Just stop and think before you move again”.   With his head and eyes down in disappointment he answers, “I don’t know where they are”.  I am standing in front of the cabinet where the bowls are and I repeat “Michael, look at me.  You know where the bowls are”.  As he looked up, I moved my head just a tad and he knew. 

By this time though, confusion, fatigue and disappointment were settling in.  He walked to the cabinet to get a bowl but could not open a cabinet door without opening another.  Open, close, open, close, open, close.  “Mike, say it out loud.  What do you want to do”.  Mike says, “I want to get the bowl”.   “Do you see it?”  “yes”, he says.  “Then put your hand where your eyes are and grab it”.  He was able to get the bowl and then placed it on the island.   We went through a very similar lengthy process with the spoon but getting the milk was easy.  I was leary about the actual pouring of the cereal and milk but with everything else considered, his hand eye coordination worked well.  Time - 9 minutes.

When given the same task this morning, Michael went to the pantry, got the cereal, got the milk, got the bowl and then got a spoon.  Ok, he also got a fork but what progress from just a few days ago.   Last week Mike was lost in the world he knew so well, and this week he made his own breakfast.  Time - 3 minutes. 

The next time you  have cereal for breakfast, take time to think of each single step that your mind has to process to connect the thought to the eyes, to the arms, to the hands, to the fingers to complete the task.  Then think of Michael. 

There are many long roads we’ll travel on this journey with Mike.  Down each road, we need your love, your support and most of all, your continued prayers for strength and healing.   Your comments on the blog (which I still read to him) are his daily reminders that he’s going to be ok and that the strength he gathers from this beautiful circle of friends is not broken.   Please keep Michael in your thoughts.   Keep Hope Alive.

LIVESTRONG xxoo

memories

There are so many hills to climb but the debilitating loss of short term memory seems to be affecting Michael the most.  To use an analogy that would suit Michael’s way of thinking, someone changed his processor from an Intel Core 2 to a Pentium 1 and removed his RAM.  We’re using a calendar to keep track of daily schedules and activities, and taking pictures (when I remember) of people that come to visit.  We’re practicing writing and we journal as much of the day that he remembers but the fatigue that accompanies TBI, battles to control.  Within 10 minutes, he has no recollection and when he’s tired, it’s lost within 5 minutes. 

Unless it somehow made a memory…  Bobby’s brother Ben is friends with Shaquille O’Neil.  When they spoke, Shaq said that when he was in the DC area he would try to stop by and see Mike but in the mean time he would send him a little something.  “Who’s sending you an autographed basketball?”  Without missing a beat, he responds “Shaq!” every time.

There is a HUGE difference in the quality of rehabilitation a patient receives after leaving in-patient rehabilitation and moves on to in-home therapy.  Michael made tremendous progress in those 6 weeks at Mt.Vernon where 3-4 hours a day he worked with therapeutic professionals that never slacked or stopped pushing him.  He now has therapy twice a week with OT,  so far twice a week with PT and praise God the Speech Therapist agreed to come three times a week.  On Monday, the Physical Therapist arrived late and left early and asked him after every exercise if he needed a rest.  Ok, maybe I’m being a little tough on her but the coming late and leaving early is not acceptable.

Despite the reduced professional assistance, we are pushing forward.  Michael and I work each day to ensure that he progresses and he is.  He is determined and so am I.  We laugh, we talk, we never act like this is forever.  We look at today, we set goals for tomorrow and that’s how we make it through.  We talk about the damaged parts of his brain and how the healthy new connections are fighting to push the old damaged pieces out of the way.  How the damaged parts sometimes speak first and how important it is to find ways to help the new guys get stronger so they take over. 

We don’t know what the future holds so looking forward is only a guess.  For my own strength, I can only believe that the future holds promise for Michael and the dreams of his life are still attainable.

At the dinner table Mike says, “I love that girl.”   “I know, honey.  Did you tell her?”  “No, I think she knows”, Mike says quietly.  Although she was long gone, he says when asked about visitors, ”she’s upstairs sleeping”  and argues with Nate that it was true.  The truth hurts when no one is there when he gets to his room, and as his head hits the pillow he asks, ” do you think I’m going to be ok?”  My response came with confidence.  The confidence you give when your child takes off on that first bike ride with no training wheels “You’re going to be fine.  Don’t doubt it for a minute.”

Great strides

Remember the disastrous trip to Panera with the Occupational Therapist at Mt. Vernon?  Mike overloaded with sensory stimulation and “freaked out” in the words of his OT, and ended up putting her in a head lock.  No harm intended.  He was lost in a world that he was not ready to reenter and was grabbing for security.  His OT got a good laugh after the fact, but it was a good measure for testing over all.   As a continuation of his therapy, an occasional trip in the car is suggested as well as introductions to public spaces to build up tolerance to visual and auditory stimuli.  Yesterday (one week home) Mike, Bobby, Nate and I went to IHOP for breakfast at Mike’s request.  He did so well.  He wasn’t overly stimulated, there were no head locks, no freaking out, it was like being at IHOP with Mike.  We are so proud of the progress he has made and as he compared the two trips, he was so proud of himself.

Although memory is still a huge deficit, when his mind is able to capture the picture, the feeling, the smell of the moment, he remembers.  Mike remembers almost all the details of that trip to Panera.  This morning he remembered that yesterday was Friday, January 12th.  No, it was the 11th but throughout the day yesterday, he defaulted to Friday the 12th so when he pulled up that memory, he remembered what was sound in his mind, the 12th.  He also remembered that he and I went to IHOP…sorry Bobby and Nate; I guess you guys didn’t quite make the cut.

Mike visited with Jimmy, Matt, Nate and Jessie yesterday and as we were scrolling through the website, we read Nate’s entry when he was in the room with Mike at Mt. Vernon.  Nate told Mike that he was writing on the blog and asked if there was anything he would like to say.  Mike answered “Yes.  I have just one thing to say – Keep Hope Alive”.   There is nothing but hope, my man.  It is more alive than ever.

LIVESTRONG Michael.

xxoo

week 1 at home

“Have you thought about setting goals for your recovery? the occupational therapist asked.  Mike answered, “yes, I would like my eyes to see better.  Maybe work on my shoulders.  I’d like to walk normal.  I would like to get the answer right.”   For a guy that less than three months ago suffered severe traumatic brain injuries, that was a pretty good answer.  If you’re keeping track…at the time of discharge from Mt. Vernon Rehab, Mike’s Rancho Los Amigos measure was Level VI.  

Yesterday was a full day for Michael with Occupational therapy at 11:30, Physical Therapy at 1:00 and Speech Therapy at 2:00.  The PT arrived late and ran in to the ST time slot.  They took turns with Mike during the last half an hour of PT, with the speech therapist giving Mike an extra half an hour.  Thank you Erin.  Erin is a tough 30 year old from Pennsylvania and is an energetic ball of fun.  Her dry, intelligent wit is a perfect fit for Michael.  He announced yesterday during the combined PT/ST session that she had already become his favorite.   She later asked him why she was the favorite and he answered, “you work my brain.”  Erin will help Michael develop new strategies for remembering and exercising higher-level intellectual tasks that used to be second nature for him.   

Updates from the week:

• An estimated 8 weeks of in-home therapy
• A devastating blow that Michael’s insurance will not cover outpatient rehab through Mt. Vernon’s Bridge Program – looking for another outpatient facility specializing in TBI rehabilitation within the area.
• A very informative visit from Brain Injury Services
• Learned that Mike would rather do anything than ride in a car.  He panics, he gets dizzy and nauseous, he breaks out in a cold sweat…he hates it.
• Began the arduous process of applying for disability coverage to help Michael qualify for health and rehab benefits.  A possible source of income to help pay previous debt that he is no longer able to provide the income to cover – student loans, credit cards and so on.  To find the path that will empower Michael so the present circumstances do not knock him down, but will instead build him up.  
• His sense of humor is strongly intact 
• Progress in all areas.  Mike tires easily - doesn’t give up.  He is determined to be the best he can be.  Did we expect anything less from him?  No, we knew he would fight.

If you would like to stop by and visit with Mike, just call.  He is still easily over stimulated but he’ll do fine with about a half an hour to an hour visit.  Unfortunately, we usually don’t have his therapy schedule until the morning of…but call and we’ll give you the best information we have.   There is really no time that’s better than another, it just depends….

xxoo