Untethered

The decision has been made:  I am not returning to work at the end of this year.  

I have been approved for long term disability benefits, but my employment has been terminated. There was no other option; my brain hasn't recovered enough to allow me to resume working.  

The termination process is already underway.  I've returned my laptop, cell phone, corporate card, and handed my keys back to my manager.  It is another devastating loss in a series of devastating losses for me.  

For the first time in many, many years, I don't have a plan.  Or a title.  Or an employer.  I don't even know what to call this thing I'm doing now.  Medical leave no longer works because I have no job to go back to.  The label I was given is "Totally Disabled", defined as "...being prevented by accidental bodily injury from performing the essential duties of my own job, or of any job for which I am qualified by education, training, or experience."  I'm not okay with that label, even if it is accurate right now.  I want to believe that it's temporary, even though there's no way to know for sure.

The only job I have now is healing.  It's turned out to be the hardest job I've ever had.

Salt water

The cure for anything is salt water: sweat, tears, or the sea.  Isak Dinesen

In the early days of my TBI, I was emotionally numb.  I didn't laugh or cry.  That has changed dramatically in the last month or so.

Now I cry all the time.  Every day.  Sometimes several times a day.  And always without warning.

I cry when I'm sad.  I'm sad a lot of the time.

I cry when I'm anxious.  I'm anxious most of the time.

I cry when I'm happy, or when someone says or does something nice to me.  


If salt water is the cure, how many tears will it take to cure me?  Maybe I need to sweat more.  Or take up residence on a beach.  Or all three.

5 month update

It's been a while since my last entry; some things have changed and some remain the same.

Today is 23 weeks (161 days) since my TBI.  I've had a migraine headache every minute of every day since the impact.  That kind of thing really wears on a person.  I'm on headache med #3 and #4, which haven't started working yet, but don't have any intolerable side effects that caused me to stop using med #1 and #2.  The nausea and vertigo are somewhat improved but still a problem.

My calendar is still filled with rehab, doctor visits, and procedures.  I'm doing well in rehab overall, but had several setbacks in the last month that stalled my progress and even caused regression in some areas.  An oral maxillofacial surgeon has been added to my team of specialists because I also injured my jaw in the accident; it adds to the pain and interferes with speech and eating.  A pain specialist will be next.  

The decision about when and if I can return to work is looming large.  My short term disability runs out on December 30th, and I have to either return to work, take unpaid leave, or apply for long term disability.  There are pros and cons (mostly cons) of each option, and it's not an easy decision to make.  No one can project whether I'll be capable of working a month from now, even part time...but my team is in agreement that I'm not capable of working at all right now.  

Since I desperately want to be able to work, I'm pushing myself to improve my cognitive endurance.  It's not enough to be able to do the cognitive activities I need to work...I need to be able to sustain that effort without crashing and burning.  So far, I can manage about 90 minutes of continuous cognitive effort, but not every day.  If I try to do more, my brain gets overloaded and shuts down.  That's not even close to where I need to be, so I keep pushing to extend my limits.

I've also tried driving a few times...short distances under optimal conditions.  It takes a great deal of effort and wears me out.  My visual processing is still an issue, so everything appears closer, larger, and faster than it really is.  

I really can't believe that this is my life...still significantly impaired after 5 months...and wondering how long until my brain functions normally again.  All I can do is what I'm doing, and trust that it'll all work out.

My love-hate relationship with the calendar

For the past 6 weeks, I've used a day planner to structure my day.  My day planner is the tool that allows me to prioritize what I need to do and plan my time effectively.  I need to balance high complexity and/or high value activities (paying bills, scheduling transportation, completing insurance paperwork, setting up meds for the dogs, rehab homework) with adequate breaks.  Without these breaks or rests, my brain gets over-worked and I crash...mentally, physically, and emotionally...and I make errors.  I've gotten proficient at knowing how long I can work on something before needing a break.  I'm good at re-prioritizing on the fly when things don't go as planned.

The day planner lets me look back and see my progress.  The days I spent at rehab or did my rehab exercises at home.   The tasks I've accomplished.  The increasing amount of cognitive activities I can perform.  That's the bright side that keeps me motivated.

But there's also the dark side.

There's the 114 days since my brain injury.  That's 114 consecutive days of non-stop headache. Medications help reduce the intensity, but I haven't found one yet that has tolerable side effects. 

There's the plans I've had to cancel.  Weekend getaways.  Social engagements.  Appointments for other medical issues.  All erased from the calendar.

There's the 78 days of work I've missed.  My team has filed at least 2 drugs for regulatory approval without me.  I read the press releases.

And on the home front, the 73 days since Breanna (our eldest greyhound) was diagnosed with cancer.  I manage her medical needs in addition to my own.

No one knows what the future holds, not for any of us.  When I look ahead, I see plans I've made that I hope I can keep.  I see December 23...the date I need to return to work or lose my job, unless I can use the vacation days I didn't take this year.  And I calculate how much further I have to go in my recovery between now and then...71 days.

...and I'm scared to death that I don't have enough time.

It starts with a spark...

Yesterday I was able to recapture a tiny piece of my pre-PCS life.

I had a visit with an ophthalmologist who specializes in brain injury. She spent 90 minutes carefully determining what my vision issues were, and how to correct them. She mentioned a pilot study she wanted to do to show the effects of a particular anesthetic drop on convergence in brain injury, but said she was having trouble getting it approved. I asked her what the issues preventing approval were, and she explained them to me.

You see, before PCS, I was a clinical scientist and medical writer doing late stage drug development in oncology. I've designed, reviewed, implemented, analyzed, or monitored well over 100 clinical trials in oncology, infectious disease, cardiology, and ophthalmology. Also, I spent 3 years as a reviewer on an Institutional Review Board (IRB) that evaluates and approves clinical trials. I haven't been able to work since my injury, but somehow my brain was able to understand her situation. I suggested a revision in the trial design that solved all the problems.

I left with a prescription for new glasses, and an opportunity to be a paid consultant on her study. 

It feels sooooo good to think like a scientist again.

A day in the life

(This was written earlier but not published.)


I started outpatient rehab at Bryn Mawr Rehabilitation Hospital at the end of August.  This is a typical day for me.

7:00 am - Get up, feed dogs and give them their morning meds.  I shower, dress, eat breakfast and take my meds.  I've had a constant headache since the accident, and the meds help keep the pain under control most of the time.

8:30 am - Make sure I've got everything I need in my backpack.  In addition to my wallet and phone, my must-haves include my day planner, steno pad, pen/pencil/highlighter, wrap around sunglasses, foam earplugs, visor, ginger Altoids (for nausea), meds for breakthrough pain, iPad, lip balm, bottled water, and hand sanitizer.  

9:00 am - Since I'm still unable to drive, ROVER (community transportation service) picks me up and takes me to rehab.  I qualify for this service now that I'm a person with a documented disability. The 21 mile trip can take anywhere from 45 minutes to 2.5 hours, depending on the number of stops on the route that day.  The cost for this trip is $7.60 each way.  Most of the passengers are senior citizens going to the senior center or doctor appointments.  

10:30 am - Arrive at rehab and relax with a cup of coffee.  I need time to recover from the bus ride in order to perform well in my therapy sessions.

11:00 am - Speech/Cognitive Therapy.  My therapist works with me on memory and recall, planning, problem solving, and speech fluency.  These are the skills most severely impaired in a frontal lobe brain injury.  I have to learn new strategies to do things that used to be automatic.  

12:00 pm - Lunch break.  I intentionally schedule an hour break (or more) between therapy sessions to recover and deal with symptom flare-ups.  I eat in the cafeteria with the staff and visitors and tell myself that I fit in.  

1:00 pm - Occupational Therapy.  My therapist works with me on visual processing and convergence, as I also have damage to the occipital lobe responsible for vision.  My eyes don't work together very well and I'm very light sensitive.  I also have double vision, nystagmus, and trouble processing movement of objects.  The activities are designed to retrain my brain to accurately process and respond to what I see.  My visual processing is currently equivalent to that of an 80 year old, which is a big improvement.  We also work on fine motor skills, which are also impaired.  My hands shake when I try to use them, and I've lost sensation and grip strength.

Later in the week I'll have Physical Therapy in place of Occupational Therapy.  We work on balance and vestibular functions to retrain my brain to correctly interpret signals from my body position, vision, and inner ear.  I'm currently classified as a high fall risk.  The last thing I need is another injury, which is very common with PCS.

I also started seeing a psychologist at Bryn Mawr to deal with the other stuff that comes with having my whole life turned upside down by brain injury.   

2:30 pm - ROVER picks me up for the ride home.  If I'm lucky, I get home by 4:00 pm.  Sometimes it's closer to 5:30 pm.  The roads are narrow and winding, and those ginger Altoids come in handy.

When I get home, I let the dogs out and have a rest in a darkened room.  The later I get home, the less rest time I get...and the more I need it.

6:00 pm - Time to feed the dogs and dispense evening meds.  I double check to make sure I set up their medications correctly.  Counting out pills and putting them in the right slots in the medication tray is difficult, and sometimes I screw it up.

7:00 pm - Time to feed me, which is less fun than it sounds.  My sense of taste is impaired, and many of my favorite foods taste bland or bitter.  Only sweet foods taste normal to me.  My fine motor control skills aren't very good, so using knives, peelers, and other tools is difficult.  Chewing is painful because I injured my jaw in addition to my brain.  Usually I heat up something simple and force myself to eat it despite the taste.  I nearly always spill my food on myself or the table when I eat.

The rest of the evening is mine to enjoy.  I might watch some TV or read stuff online.  Bedtime is earlier now that I need 9-10 hours of sleep to function.  

There is almost always at least one day off between therapy sessions, so tomorrow would be an at-home day.  I'll work on my rehab homework and do all the other stuff:  doctor appointments, insurance claims, pay bills, phone calls, and household chores.  Timing is important...cognitive activities need to be done early while I'm still fresh...and I need frequent rest breaks.  If I push too hard, I crash and cannot function anymore.  

And so it goes.

Laughter returns!

(This was written earlier but not published.)


I finally laughed...11 weeks after my brain injury!

My daughter was home for a visit and offered to do my nails for me.  I went into the bathroom to remove the clear polish I had on, and noticed that one nail was starting to crack. So I grabbed a tube of krazy glue to fix it.  Just a dab would do the trick.

But my fine motor control sucks...which is why I don't do my own nails...and my fingers are kinda numb. I don't have a sense of how tightly to grip things, which means I either drop things or squish them. My hands shake when I hold objects. I haven't eaten a meal without spilling or dropping it since my injury.  I find cuts on the palms of my hands from holding things too tightly, or from my own nails. 

I squeezed the tube of krazy glue.  Nothing. 

I checked to make sure the tip wasn't glued shut.  It wasn't. 

So I squeezed a little harder.  Which was actually a lot harder...too hard, really. 

The tube delivered way more than needed.  Now I had krazy glue on my cracked nail, as well as several fingers, and the palms of both hands.  

But nail polish remover takes off krazy glue, right?  I grabbed the cotton ball soaked with nail polish remover I had just used to take off the nail polish, and used it to remove the krazy glue.  Problem solved, right?

Nope.  Instead of removing the krazy glue, I had bits of cotton glued all over both hands. I looked like a preschool craft project gone wrong.  

I wandered out to where my daughter was waiting for me and started to explain my issue.  I got as far as "I have a problem..." before I started to giggle...because a grown woman with cotton glued to her hands is funny.  

And at long last, my brain recognized that and responded correctly!

I don't laugh often, and it's little more than a chuckle when I do...but it's something.

Month 2: MTBI becomes PCS

The second month of recovery was no different from the first.  I had some small improvements in my symptoms, but they're all still hanging on.  As of today, I've had a headache and nausea every hour of every day for nine weeks.  My speech is slightly better, but still not good.  I haven't regained any of my lost skills yet.  My emotions are still on lock down.  

You may be wondering how I can write these blog posts.  It isn't easy.  I am a medical writer by profession, and used to writing dozens of pages of data dense and highly technical text on a daily basis.  These posts take hours to write and wear me out for days afterwards.  I push myself to do it so I have both a means of communication and a connection to life I had before my brain injury.

Most people with MTBI recover within days or weeks of their injury.  When that doesn't happen, it becomes Post-Concussion Syndrome (PCS).  PCS can last for months or years, or forever.  It is poorly understood, and recovery from PCS can be very erratic with many regressions.  It's the reason why careers end after MTBI.

A visit to my neurologist at Week 6 confirmed that I hadn't recovered from MTBI, and my diagnosis was now PCS.  I was devastated.  My neurologist referred me for a neuropsychological evaluation to determine exactly where my deficits were, and to recommend a rehabilitation program to improve my brain function.

On August 12, I went to Bryn Mawr Rehabilitation Hospital for the neuropsychological evaluation that included an extensive interview and several kinds of neurological and cognitive assessments. The evaluation was in the morning, which meant I was fresh and not tired when I started.  Best foot forward, and all that.  I thought I did pretty well, and was a little surprised when the psychologist called me the next day to tell me I needed physical therapy for vestibular and fine motor control issues, occupational therapy for cognition and vision, and speech therapy.  

Scheduling all these therapies is difficult.  People take vacations in the summer...even people who provide therapies at brain rehab hospitals.  My first sessions aren't until August 29 and 30.  I'm very impatient and want to get started immediately...the sooner I start, the sooner I get my life back. The plan is to repeat the testing after 6-8 weeks of therapy to see how I'm doing, and if I'm ready to start transitioning back to work.  

What I thought was a week off from work will now be more than 4 months.

I received the written report of the neuropsychological evaluation a couple of days ago, and  I was horrified by what I read.  My scores for some of the cognitive skills were in the 15th-20th percentile. I scored very low for verbal memory, reaction time, visual motor speed, processing speed, attention, visual processing, and expressive language.  Cognitive efficiency (the speed to balance demands of speed and accuracy) was the worst, at 7%.  My expected pre-injury baseline scores were well above average...in the top percentiles.  And here I am now, with only a small fraction of my previous cognitive abilities.  

I am a scientist and a writer, but the part of my brain responsible for those things isn't working.  My analytical skills are missing.  My verbal communication is poor.  I cannot properly understand or develop strategies.  

The road just keeps getting longer.

How many times can I use a form of the word "feel" in one blog post?

In the beginning, people asked me how I was feeling.  I could name my physical symptoms: headache, nausea, facial pain, visual disturbances, balance problems, difficulty with fine motor skills, and pervasive mental fog.  I had an acceptable answer to the question, especially if the person asking was trying to evaluate my recovery.

Naming my emotions was more difficult.  I didn't have any.

I feel nothing at all most of the time.  

The first time I cried was 6 weeks after the accident.  I was trying to convince my neurologist to send me to intensive inpatient brain rehabilitation.  It felt like I was fighting for my future without any weapons.  The sudden realization that I had no ability to determine my own destiny was soul crushing, and without warning I started to cry.  And then apologize for crying, because it's never appropriate to cry in your neurologist's office. 

I've cried only twice since then, and only briefly.  Both times it was for the same reason: the soul crushing truth that I had no ability to determine my own destiny.  It's a damn good reason.  I'm mildly surprised that I don't cry all day, every day...but I don't.  Even though I have a lot of other damn good reasons to cry.

Occasionally I have something that is akin to anger.  In the early weeks after the accident, I would have sudden flashes of anger born of frustration.  These flashes would last only a few seconds...not long enough for me to speak or to act on them.  Lately I feel something that is more like righteous indignation when I read about the injustices in the world.  It lasts for a few minutes, but fades away without an ability to act on it.

In 9 weeks, I still haven't laughed.  I tried once.  It sounded like a cross between a cough and a stutter.  Nothing is funny now, even stuff that I know on an intellectual level is funny.  I just can't connect to it.

I also can't listen to music.  Or sing.  Or dance.  I can't feel it.  

Sometimes I wonder if my brain is sequestering my emotions to prevent me from losing hope that I can recover completely.  When the strongest thing I feel is overwhelming despair, it's probably a good thing I don't feel anything very often.

I feel less than human.

* 8 times, not including the title.  That's also the number of times it took me to count the number of times without losing my place.  And I'm still not sure it's accurate.

Recovery, Month 1: Symptoms and Daily Life

There is no treatment for MTBI.  My doctors told me to rest my brain for a month and wait for the symptoms to ease.

How do you rest a brain?  Don't give it anything to do.  That means no working, no reading, no thinking, and minimal stimulus.  For me, that meant being alone in a quiet house, usually laying in bed or sitting on the couch, sleeping up to 15 hours a day.  It sounds easy enough, but it's not a natural state.  Our brains are meant to be used, but mine was out of order.

The physical symptoms continued.  I had a constant headache and nausea that got much worse if I tried to use my brain, or if I had to ride in a car.  If I moved my head too quickly, I'd lose my vision and nearly pass out.  Noises, including conversations, could easily overwhelm me and cause my brain to stop processing information.  The confusion and fatigue did improve, thanks to the Adderall my neurologist prescribed.  My speech was still not fluid, and the struggle to communicate wore me out. 

To keep my sanity, I did read a little or watch some TV.  I discovered that I had the reading comprehension of a 9 year old, and that I couldn't maintain concentration to read anything longer than a newspaper article.  I could only watch TV shows that had simple, predictable formats, and that didn't require remembering a previous episode.  Movies were too difficult for me...I missed a lot of the dialog and most of the nuances of the plot. 

Social networking was too difficult to navigate.  I could read status updates on Facebook, but I was never really sure I understood what people were saying.  I didn't dare post or reply, because I couldn't trust that my responses were appropriate.  I did manage to update my status after a few weeks.  That simple post took an hour to write. 

I kept a running list on a steno pad to remind me of the things I needed to do:  fill out insurance forms, schedule appointments, pay bills, and any other tasks.  Each day, I would review the list and figure out what the priority was, and try to accomplish that task.  Then I'd write down the date I completed it, and any notes about it.  Otherwise, I couldn't remember any of it.

In spite of my obvious limitations, I was hopeful that by the end of a month I'd be back to normal and ready to return to work.  I contacted my boss and my case manager to try to get a transition plan in place to resume working.  I didn't understand that I was still profoundly impaired and in no shape to do my job.  Thankfully, my case manager understood the situation and helped me recognize that I couldn't come back yet. 

I rested and waited for my brain to start working normally.

WTF is MTBI?

MTBI is mild traumatic brain injury.  According to the Brain Injury Association of America, the term "mild brain injury" can be misleading.  The term "mild" is used in reference to the severity of the initial physical trauma that caused the injury.  It does not indicate the severity of the consequences of the injury.  

I found this out the hard way.  

I had no broken bones.  The swelling and bruising in my face resolved after a few days.  But the damage inside my brain was only beginning to become obvious.

The initial treatment for MTBI is brain rest.  I believed that if I took it easy, I'd be just fine in a few days...a week at most.  Many people do recover in a short time.  

This time, I am not one of them.



More on MTBI:
http://www.biausa.org/mild-brain-injury.htm

How did I get here? The accident and the injury

The Accident

On Saturday, June 22, 2013, I got into a cab in Brooklyn with my daughter for a trip to Manhattan. There was a lot of traffic that day, but finally a lane opened up and the cab accelerated.  A pedestrian appeared in the path of the cab and the driver braked hard to avoid hitting him.  The cab hit the pedestrian, but at a slow enough speed to avoid significant injury.  The pedestrian got up and left the scene.  The  cab driver stopped, but then drove away.

Meanwhile, in the backseat of the cab, I hit the partition face first.  My head was turned a little to the right at the time of impact, which spared my nose from being broken.  Intense pain radiated through my head and a fog of confusion, dizziness, and nausea enveloped me.  My daughter kept telling the driver that I was injured, but she drove on to our destination without reporting the accident or seeking medical help for me.  

The Injury

Even in the fog, I knew I had a concussion.  Unfortunately, I didn't comprehend that I needed immediate medical attention.  I tried to function normally, managing to return home to PA the following day by train.  My headache, confusion, dizziness, and nausea were joined by swelling and bruising of my face, and difficulty speaking.  I slept for more than 20 hours but didn't feel any better. I struggled to try to work from home for a few hours before giving up and heading out to see my doctor.

My doctor diagnosed me with a mild traumatic brain injury, and told me to rest completely until it was better.  The x-rays showed that my facial bones and skull were only bruised, not broken.  The MRI showed there was no active bleeding in my brain.  My brain was bruised,  and there was damage to the individual brain cells and connections between them.

I saw a neurologist who did a more in depth assessment that showed I had significant deficits in cognition, speech, vision, balance, and fine motor skills.  I needed rest...lots of it...so my brain could repair itself.