My path has been “interesting” the last few months.  I haven’t been blogging about it though.  I’ve hit both the highs and the lows.  I rode in the MS bike tour in September – the “short” routes – about 50 miles a day.  I finished with a good average pace – better than expected.   A week or so later, I went into a situation where I lost a lot of blood and my hematocrit dropped precipitously.  I went from riding 50 miles in good form to getting out of breath walking half a mile to pick up my mail.   That situation is normalizing.  In the interim, I seem to have lost my normal ability to walk.  This MS / TBI stuff  is being choreographed by someone with a weird sense of humor.  Another reminder to live forward.  Didn’t realize I was due for another reminder…

A man dies and enters heaven.  There, God shows him the path of his life, seen as footprints in the sand.  For most of the path, there are two sets of footprints side by side.  At some points, there is only one set.  The man comes to understand that God was walking beside him for most of his life.  He didn’t understand the times when he saw the single set of foot prints and asked God why He left him on his own, all alone.  “I never left you alone,” came God’s reply.  “Where you see only one set of footprints are the times when I carried you.”

I don’t know your beliefs, but this pretty well describes mine.  I flat-lined briefly in the hospital in early 2006.  They had to jump-start my heart.  A devout religious friend questioned me about my experience – did I see God or what?  I told him that I didn’t see a long tunnel with a light at the end or anyone with a beard, long hair and flowing robes and I didn’t hear a booming voice calling to me.  I did have a sense of knowing that everything was alright, no matter what my finite vision showed me.

I’ve tried to make sense out of this, to fit it into the framework of the paradigm that I held, but paradigms don’t stretch.  They shatter, allowing for a new birth, new thought.  The only thing I can suggest to do when faced with a situation such as this, is to look to your children.  The answer – ineffable – lies in their faces and their eyes.  You’ll see it.  You’ll know it.

Where Are You Going to Find Your Bliss?

“Follow your bliss” was one of the catch phrases of past decades.  I don’t hear it repeated much these days.  Have people lost their verve AND their nerve in this day and age.  Has following the safe and beaten track become the norm?  If you follow the beaten path, what are you going to find?  Footprints, discarded food wrappers and other detritus, dreams that were left behind – unfinished, unrealized, and, in many instances, unopened.

No one ever made a great journey by sitting anchored in the safety of the harbor.  Don’t wake up one day and say “If only I had…”  If you’re going to regret something, regret what you did, not what you didn’t do but always wanted to do.

How does this relate to brain injury or to some other disability that is challenging you?

It is everything, in my opinion.  I’ve been finding a lot of agreement – in the literature – psychological and physiological, from some of the doctors with whom I’ve spoken, and, most importantly, from other patients – people just like you and me, who have chosen to celebrate their victories, big and small, and bask in the bliss that is there for them.

After my crash, my left side was paralyzed.  Regaining enough control so that I could tie my own shoe laces was as big a cause for celebration as was completing my first post-crash century (100 mile) ride.

In life and in brain injury recovery, going for the things that challenge you, that bring you happiness in their achievement, fosters further achievement.

Don’t sell yourself short!  Follow your bliss and when you find it, let it guide you on to the next step.

Dear Family, Friends, Supporters All,Link to my Bikems: Waves to Wine personal page  >> http://ht.ly/48hd6 <<  Link to my Bikems: Waves to Wine personal page 

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Multiple Sclerosis was just one of the many diseases I heard about in pathology class. It was far removed until my brother was diagnosed with it.  It’s not something that’s easy to take in anyone, but my own brother?! I began fundraising for the National MS Society, educated myself as much as I could and began participating in the MS bike tour.Several years down the line, I began to notice symptoms in myself. Being aware of the disease and the increased incidence in siblings, I took myself to the doctor and, after many examinations, heard the words, “I’m sorry. You have MS.” Shocked, dismayed and numb, I moved forward.   It was the only thing to do.  Finding a cure for this disease had just taken on a new level of importance, of urgency.

No one should have to hear those five words… NEVER!! Not a parent, not a sibling, not a child, not a friend or relative… NOBODY!!

Since my diagnosis I’ve worked hard to maintain myself the best that I can. One thing has been constant for me – the support I’ve received through the National MS Society. Whether it has been the people, the programs, the research (we’re definitely moving forward in this area) – I always know that someone is out there.

I’m still able to ride. That means I can ride in support of those who can’t. Those whose lives have been affected even more than mine.  I’m asking you to join with me in supporting the National MS Society, in supporting those who are living with MS, in making sure that no one else has to hear those five words: “I’m sorry. You have MS.”

The time is for action is now! The time to fight MS is now! The time to win, to find a cure, is NOW!!

Thank you for your support.  It means so much to so many!

Mark

Registration and Donation information:

Join me on this journey.  I’ll put in the miles.  I’ll pedal the bike.  Having you in my corner supporting me and the National MS Society  will make the hills seem smaller and the task much less daunting.

You can find my Waves to Wine personal [age at: http://ht.ly/48hd6  From there you can register for the ride and join my team if you’d like or you can make a donation to fight MS.  Either way (or both), I’d love to have you join in.

Gabrielle Giffords is about to be released from the hospital following her horrific traumatic brain injury. Her story caught the attention of the nation and definitely, the attention of those of us living with varying stages and severity of brain injury. In general, everyone with whom I’ve been in contact is very excited and happy for her. Her success in recovery is a shared success for all of us. To have been shot in the head, had part of her skull removed and to have lived through this ordeal gives us hope that our recovery can have a happy ending.

Two things I must say before going on:

1. I know that this isn’t a story book ending.  The path to recovery from brain injury is a long and arduous one. This is merely a way station, a whistle stop / photo-op on a much longer journey.

2. The hard work is just beginning. I can see the heads of readers who are living with brain injury nodding in agreement.

With that said, I want to offer my congratulations and well-wishes. Representative Giffords, your on-going recovery success is deeply felt by the brain injury community. We share in the joy just as we shared in the grief of this horrific incident. Joy shared is joy multiplied. Grief and sadness shared are grief and sadness diminished.

It is exciting to see the progress that has been made.  It is heart-warming to see the outpouring of concern, of good wishes, of care.  The health care Giffords received was top notch.  The number of prayers sent her way was over the top (Yes, I believe this aided in her recovery.)

This brings us to the last part of the title. How envious are my fellow TBI’ers?

Are people wishing that they had the same access to health care? Do they wish that there was the same outpouring of concern for their recovery and well-being?  Would they want a stylist fussing over them so they would look good in their photos as they were released from care (would they want even one person caring about how they presented to the world?)

The answer in almost all instances is a resounding and unequivocal YES.

I have been blessed with a wonderful family helping me as they can, helping to manage my affairs, etc.  I have friends and colleagues that are there for me and, most of all, I feel safe in this fun-house mirror world of brain injury.

The fact that all TBI’ers don’t have adequate (adequate begs the issue – a better choice of words is exemplary) care and caring is WRONG.  As a society, we worship celebrities and often put more value on things than people.

The time has come for a change.

No man is an island. No man stands alone….  Do not ask for whom the bell tolls.  It tolls for thee.

~ Meditations – John Donne

The news came last Tuesday.  It was the news I’d been hoping to hear.

I lost a large part of my sight a year ago.  There’s still discussion amongst my doctors about what happened.  Was it the effects of multiple sclerosis?  Was it new stroke damage from an artery damaged when I sustained a crash injury in 2005.  It didn’t really matter at this point.  What did matter was the effect it had on my vision and my outlook on life.

A little background is in order here.  I’ve always been a positive thinker.  It was the way I had been raised.  I was a dyed in the wool “glass half full” person.  Looking for the positive in a situation was second nature to me.

What was different about this instance?  Where did it leave me?

It wasn’t until the neuro-ophthalmologist showed me the print out of my visual field tests that I came to the realization of how much attention I had been putting on what I couldn’t see, on what I couldn’t do.  That’s not like me.  I wouldn’t accept that frame of mind in my patients.  Now that I was the patient, why had I been accepting it in myself?  The excuses came up surprisingly fast, as if they were waiting behind some veil, at the ready to defend my basically indefensible position.  I can rationalize that they were there to protect me, to keep me safe.  As long as I believed that blindness and visual impairment had the upper hand, I would fight to regain my sight.  I would work to live my life as close to the one I knew as a fully sighted person.

I learned from others such as my occupational therapists, my trainer from the Lighthouse for the Blind and from my own stubborn-headed trial and error.  I was going to make this work for me.  I navigated the streets of my hometown and the places to which I would travel.  I shopped, cooked, and cleaned for myself as I slowly adapted my home to suit me.   I had some assistance from friends and family, but in the end, self-reliance was the order of the day.

During all of this, I had one constant thought running through my head – “I am blind.”  A more accurate statement is “I am visually impaired and living with “low vision.”  It’s not as easy to say and I tired of explaining to others what that meant.  I kept hearing the term “blind” from those around me – doctors, therapists, my immediate circle and, most importantly, I was hearing it from myself.

I had become so involved with what I couldn’t see that I lost sight (figuratively and literally) of what I could see.  My attention was on the glass half empty state of being partially blind.  It didn’t consciously occur to me that this also meant that I was partially sighted.  There were things that I could see, even if I couldn’t see them well.

What happened to me that day in Dr. Reader’s office still amazes me.  I went in for my one year post-incident exam.  I was run through an extensive series of tests and when They were completed, Dr. Reader and I reviewed the results.  Yes, there were areas in which I did not and do not see.  There also had been improvement since my original exam.  The non-functioning areas were smaller and more discrete.  And, lo and behold, there were areas that I could see.  Not areas that I imagined I could see.  There were large areas in my visual field that worked.

I was happy to have this new information and at the same time, I was taken aback.  How long had I been looking at the half empty glass and not realizing that it was also half full.   I had adopted the persona of a blind person.  I kidded about my impairment.  I dealt with life as not seeing.  But most importantly, I believed at a very deep level that I couldn’t see.

Now I was faced with objective data that I could see, maybe not as well as I could before, but it was staring me in the face that my visual system was working again.  I was elated and I was confused, very confused!  Almost instantaneously, I could see.  I approached the world in a new found way.  My vision isn’t perfect, but it is a hell of a lot better than I believed it was.  Believed – that’s the key word here.

How much do we hold onto to negative self-beliefs and perceptions?  Are we perpetuating them by garnering agreement from those around us?  What is that costing us?

Change happens in an instant.  The preparation for change and, definitely for me, absorbing what that change means in our lives, is where the work is.  Are you preparing for or instigating change in your life?  When it happens, how readily will you accept and embrace it?

Scientist: def; A scientist, in the broadest sense, is any person who engages in a systematic activity to acquire knowledge

Who is today’s neuroscientist?  Is it the academic, sifting through reams of data, running tests on arcane and esoteric subject matter?

Who is he or she?

I’d like to propose that the brain injured are today’s true neuroscientists.  At times it feels as though everything is the test of a hypothesis.  Quite often, the data collected is scraped knees, frustration and assorted bumps and bruises as we attempt a physical feat that was, at one time, second nature,   Now, it must be relearned and fine-tuned just as a child learns to tie the laces on his or her shoes, an especially poignant example for me as I DID have to relearn shoe tying in my rehab from paralysis.

The brain injured person is a reluctant scientist, having gained a certain practical knowledge in a way most others would not entertain.

All the “sacrificed for science / knowledge” statements pale in comparison to the “I broke my brain and I’m studying brain injury from the inside out” statement.

There isn’t a strict adherence to the scientific method.  There isn’t an adherence to much.  The person with a brain injury becomes an experiment of one, measured and classified by comparison to a norm far removed from his or her own status and daily experience.  Only the empirical data at which he or she arrives has true meaning and then the paradox is that this neuroscientist must filter the results through the broken mechanism being studied.  Brain injury is the ultimate catch-22.

I’ve been visiting my family on the east coast for almost a week and a half now.  Even after almost six years since my accident and nine years since my MS diagnosis; they still don’t understand / accept my brain injuries – acquired or traumatic.   I’ve tried to be a brain injury educator.  They are an intelligent group, but sometimes I feel that my words are falling on deaf ears.

I know that I’m not alone in my frustration.  In conversation with other BI survivors, I hear the same frustrated tone.  I have read many blogs, essays, and excerpts from books in which the authors share the same lament.  I hear it from callers on the MSFriends.org phone counseling line.  There seems to be an epidemic of selective deafness, a non-hearing of the truth that is uncomfortable.

I understand the place from which this comes.  Family and friends are waiting for the “old Mark” to come back, the Mark they knew before.  I’m here to tell you today:

“Ain’t happening!!”

That ship has sailed.  What I and so many in a similar place would love is if we were accepted for who we are today.  If there is some challenge we’re facing that isn’t being dealt with effectively (I hesitate to use that word here.  Effectiveness and efficiency are often words that have been removed from the brain injured’s lexicon), don’t point it out and stop there.  Take our hands and walk us through at least part of the solution.  Help us monitor our own progress.  Most of all, allow us to be who we are today, accept  us in this new brain injured / “working on establishing a new life” configuration.

In an earlier post (March 30, 2011), there is a poem about this called, “The Conversation”.  Look for it and read it.  Let’s live in the present and orient ourselves towards the future, something from which we all, brain injured or not, could benefit.

If you’re a member of the club (you know, the one you never planned on joining),  it’s likely that this will be familiar to you. I’ll have to admit, it is in part, the product of frustration – the frustration of having to repeat the same thing over and over and still not being heard and understood.  In talk with others in the brain injury community, the experience is widespread.

This was first published on wordgathering.com, a journal of disability poetry.  Go there.  There’s a lot of good reading awaiting you.  It may be a more palatable way to “ingest” the “disabled / differently-abled experience.”  Taking in disability is difficult for many, especially when the disabled person is someone close to you.

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The Conversation
By Mark Langer

“You should just…”
“I would, but…”

It’s the conversation that goes on and on.

“I can’t.”
“No, you won’t.”
“No, I can’t.”

That part of me doesn’t work.
The lights are out.
The power is cut off.

Are you listening to me?
Are you hearing what I’m saying?

“You’ll do it when you really want to.”
“I want to right now.
I’d do it if I were able.”

Disabled
Differently-abled,
What you call it doesn’t matter.
The changed ability does.

“You used to…”
“That person no longer exists.”
“But you’re standing here in front of me.”

The face is familiar. The body looks the same.
But have you looked closely?
Have you asked the hard questions?

Are you listening to me?
Are you hearing what I’m saying?

The Conversation
By Mark Langer“You should just…”
“I would, but…” 

It’s the conversation that goes on and on.

“I can’t.”
“No, you won’t.”
“No, I can’t.”

That part of me doesn’t work.
The lights are out.
The power is cut off.

Are you listening to me?
Are you hearing what I’m saying?

“You’ll do it when you really want to.”
“I want to right now.
I’d do it if I were able.”

Disabled
Differently-abled,
What you call it doesn’t matter.
The changed ability does.

“You used to…”
“That person no longer exists.”
“But you’re standing here in front of me.”

The face is familiar.The body looks the same.
But have you looked closely?
Have you asked the hard questions?

Are you listening to me?
Are you hearing what I’m saying?

Helmets save lives!! It might be better put to say, “Helmets keep you alive.”  The two are not equal.  Lives end and lives change but helmets keep you around to talk about the difference.

I can only think of one main thing to say  about helmets – WEAR ONE!! It’s a pretty simple act.  Oh, you could be defiant and not follow the crowd.  You could also end up dead.  Who in your life would that affect?

With the advent of daylight savings time and warmer weather, more people will be out on their bikes, skateboards, etc.  Something to keep in mind is that the human skull is not unbreakable and it houses something that’s pretty important – YOUR BRAIN!!

Use your brain. You’re an intelligent person. WEAR A HELMET!! I survived a high speed crash thanks to a good bicycle helmet.  Technology has given us comfortable and very effective protective gear.  The paramedics who scraped me off the road and brought me to the hospital had this to say about my use of a helmet ..  “Man, if it weren’t for your helmet, you would have been seriously dead!” (I’m still trying to figure out what it means to be un-seriously dead.)

Even with the protection of the helmet, I sustained serious injuries, but the helmet protected me from lacerations and fractures.  What do you think would happen to your unprotected skull if you hit the deck at 40+ mph?  Not a pretty picture, is it?

If you choose not to wear a helmet, that’s your choice, but I’d like to leave you with this one question…

“Who will be left behind to put flowers on your grave?”

It was a clear day, warm and sunny – not the type of day that would lead you to thoughts of destruction and disarray, of mayhem and misery.

———————————————————————————————————–

The road stretched out before our group.  We had flown down hills, swept around curves, and climbed the mini-mountains of the north coast.  Now, we sat back and relaxed on the front porch of Rancho Nicasio, enjoying a cool drink, our front wheels anointed with the liquid that had fueled that man / bike machine, our fallen friend – taken too early, much too early.

“Just a can of Coke – that’s all that I need – enough fluids and sugar to top off my tank, a little caffeine, and I’m good to go.   Less than an hour of riding, two more hills, and let it roll back home.”

It was a refrain we all remembered from a song no longer sung.  Illness had taken our friend from us.  Shortly before his death, we made a promise to celebrate his life whenever we came through this place that he had loved so much.  Marin is a great place to be a cyclist.  He never let us forget that.

————————————————————————————————————

We headed out from our rest stop, splitting up at the Lucas Valley turn off.  Most of our group had parked in San Rafael while I rode in from Larkspur to meet them.  Now alone, climbing to the crest of Nicasio Valley Road, I focused on my breath.  In and out, easy and free of restriction, I knew I was ready for next week’s BikeMS tour.

I crested the hill, waved to a small group heading uphill slowly, and looked down at my cyclometer – 41 mph – this was the fun side of the hill.

————————————————————————————————————

Slowly, I became aware of the clanging and banging noises.  Closed in, restricted – I was a torpedo loaded into the launch tube of a submarine.  Where am I?  This isn’t Nicasio Valley anymore.  Where the hell is my bike?  Where are my shoes, my helmet, my clothes?

I was about to be pulled out of a scanner at Marin General Hospital.  My bike clothes – the parts that hadn’t been shredded by my skid along the asphalt, had been cut off of me. My bike – surprisingly undamaged – had been stored by the paramedics who found me and brought me in.  I hurt or, should I say, I HURT!!

And so, it began…