Be patient with your recovery; take the time!

Be patient, it takes time to come back from any sort of brain injury, or even to find the point of balance that becomes your ‘new normal’.

I fought like hell to get back to work after my haemorrhagic stroke.  I couldn't sit at home, essentially feeling like I was under house arrest, prevented from contributing to the world and the environment I had been helping to to shape.  I wanted to go back to work.  I was bound and determined to demonstrate that there was nothing significantly different about me, my memory or my cognitive abilities.  I fought to get permission to walk back in the door after only seven months.  I started back on a phased, part time schedule, which included being given the opportunity to travel to Florida for a conference.  After much confusion about how to 'track' my time and negotiation with the insurance company, I was then put back on ‘active’ status nine months after the incident.  I think it may have been better if I had waited out the full year.  That is what many of the doctors and therapists use as a rough guideline.  Take the year!  Don’t rush it.

I found that at the one year mark I could feel a profound difference in my vision, my balance and most of my cognition and attention span.  It was almost like a switch was thrown somewhere in the circuitry of my brain.

It isn't perfect yet.  How much of it is simply my age, which some doctors seem to take great delight in teasing me with, and how much are the residual effects of the brain bleed?  I don't know.  And it is the not knowing that truly disturbs me.

I’ve discovered that emotionally I haven’t always been ready to take my place at the table for the meetings that are an integral part of my job.  I've also discovered that cognitively I may not be up to the tasks I really want to take on.  It’s not that I can’t do them, I just can’t do them as fast.

So what does the ‘emotional’ part mean?  Well, to be fair, I've become very grumpy in some circumstances.  I react with ‘glib’ responses if I'm not functioning as quickly as I’d like.  In fact, I've been downright rude, and combative at times.

Sure, I'd like to find something to blame this on, and in truth there were extenuating circumstances with my return to work that are handy for hanging responsibility on.  While I was away, my peers had parcelled out parts of my job that they felt comfortable doing, and then were extremely hesitant to give the pieces back when I asked for them.  I felt like I’d lost ownership of the job, especially the parts that I felt most passionate about.  And even as this was happening, or not happening as the case may be, we got a new boss whose first introductory statements included ‘reorganization’, ‘reclassification’ and he actually presented a laundry of staff to the management group that he intended to have removed from the organization.  To his credit, he showed concern for my health, encouraging me not to rush things.  His concern for my well-being was genuine, I believe.   In my already defensive posture I interpreted much of what was presented as evidence of his kid-glove approach, especially the parts where he left me alone while working closely with my peers to hammer out a new strategy, were platitudes of condescension.

On balance, when I look back at how I feel, I spend way too much of my time being angry.  It is totally possible that this is a side effect from the stroke and part of my recovery, but it is also possible that my brain chemistry has changed.  It’s gotten to the point that I'm not sure that I like the person I’m becoming.  I'm an unpleasant, combative old man too much of the time.  If I'm engaged with what I’m doing, and success comes easy, or the conversation fits with a part of my world view, then everything is fine.  Any sort of deviation and my mind starts locking in on certain thoughts and phrases that ricochet around the vacant the corners of my mind, spilling out into the real world at inconvenient and inappropriate times.  Calm acceptance of circumstances beyond my control has become a struggle that I'm not used to.  I have to consciously throttle thoughts and reactions.

I have been experiencing deep sadness, skirted the edges of anxiety, and generally become quite concerned about my mental health.  It reached a point where I went to my doctor to get some medication to help even out the roller coaster ride.  He prescribed something, but after reading about the drug, I became fearful of starting them.  In my lopsided view, I need quick fixes, not a protracted course of treatment that starts with a full two weeks of taking a drug before any effect would be seen or felt, and then would require a month or more to come off the drug safely.

I made a decision; I'm going to do this on my own.

We’re kick starting an exercise regimen, we’re watching our blood sugar closely, ensuring that we’re eating proteins on a fairly regular basis, and we’re cutting out the drinking as much as is practical.  No more scotch for a while, just to see if we can identify a difference.

Negotiating the back to work protocol

Well, I am happy to report that there have been some real successes in the last couple of days! Two of the key successes are that a) my certain people on my rehab team are actively negotiating a graduated return to work protocol, and my employer is embracing the parameters and the graduated return to work plan. So now it's full steam ahead.  My employers’ HR team has a return to work specialist  who will have the job of convincing the provider of my Long Term Disability Insurance that this is a good idea at this time.

I'm not entirely sure how they measure success in a situation like this.  How do the rehab specialists know that I'm able to do my job when they don’t know my job, and have no baseline measurements to use to evaluate my effectiveness.   One of the things that will end up having to do is to build out a structure that they can measure my progress and ability to do the job. What does that mean? I don't know. It's going to be about being able to demonstrate that I am effective at doing my job.
My return to work is being designed as a graduated return, in that what we will do is plug me into my job for four hours twice a week to begin with.  Then we will evaluate how I'm doing and then move to three days a week four hours a day and then just keep building on it until I'm ready to assume my full duties on a full time basis.

Consider Managing Your Own Recovery

Well, I will admit that I am beginning to get tired of all of this.  I want to go back to work, but I am having a lot of trouble getting traction with the medicos who are in charge of my care.  I don’t know what comes next.  And it would appear that the team that is supposedly managing my recovery from the stroke doesn’t know what comes next either.  In conversation I have discovered that the ‘team lead’ apparently hasn’t taken the time to map a course of action, or just hasn’t bothered to communicate it to the team.  The prevailing answer to all of my ‘what comes next’ prodding is usually some vague ‘everyone is different’ generality.  Even my case manager with my insurance provider offered up the same generality in defense of the rehab team.  The case manager has offered to bring one of their rehab specialists into the conversation to help focus our disconnected efforts.

Now to be fair, I finally did get a meeting with the team lead, a Physiatrist, who has agreed to send letters to my family doctor and to the social worker who is the interface with my employer, with a recommendation that we start discussing a graduated return to work.  What does that mean?  I truly don’t know!  Is this rehabilitation specialist with the odd designation of Physiatrist actually saying its time to go back to work, or is she saying that its time to start talking about it.

One of my expectations of the medical profession is that they will actively participate in my treatment and maintenance the same way a good car mechanic participates in the upkeep of my vehicles.  The mechanic tells me how to keep the vehicle running well, and expects me to stop in for an oil change and a diagnostic look-under-the-hood every once in a while.  When I bought the vehicle, he presented me with a plan for maintenance.  When something goes wrong, he proposes a course of action, and then executes on it when I approve it.  If there is something that runs contrary to government regulation he keeps me both safe and legal by insisting that the work be done.  Now when I have a medical challenge, I expect the same.  I get much of this from my GP (general practitioner, family doctor).  My GP is brilliant!!  He is very good with me, with my wife, with my kids, and now with my grandkids.

Stroke recovery is a tough one.  There doesn't seem to any sort of formulaic 'one-size-fits-all' recovery strategy or methodology.  With a cancer diagnosis, you can be pretty sure that there are certain protocols that will be followed, and that your doctors will give you some good timelines and timeframes to help you understand and plan and to help put things in perspective for your caregivers.  You know going in that there may be surgery, that there may be chemo and there may be radiation therapy.  But you still need to take a measure of control over the details.  The challenge with recovering after a stroke is that it doesn't fit any formula.  Each incident and each patient is different.  No one is about to say that the recovery path for a haemorrhagic stroke will take six months, or a year, or any sort of time frame.  But what is especially frustrating for someone like me is that many of these teams won't even be able to offer a course of treatment/rehab in any logical or concrete way.  They aren't going to say, for instance, that they will work on your cognitive functions for a six week period, after which they will test, and then determine the new direction.  they just don't know enough or have the manpower to work it through.  So, like reacting and recovering from a cancer diagnosis and treatment you as the individual and your primary care givers need to take a measure of control over the details.
  The Canadian Stroke Foundation website is a great resource to help you and your family manage your recovery.
 I, unfortunately, put too much faith in my assigned rehab team and didn’t bother to spend too much time mapping out my own road to recovery strategy.  Now I need to put something together and make it happen…

Command and Control culture doesn't translate well...

The Command and Control culture that is the military, that is law enforcement and to a lesser degree that is fire fighting's backbone has severe limitations when applied to organizations that require innovation and transformation to thrive or even just to survive.  In spite of what the gurus over at the Harvard Business Review have to say, the Command and Control culture cannot be layered over the existing culture of an organization successfully simply because the new CEO/CIO/CFO/COO is from another organization with a long standing Command and Control culture.  It doesn't seem to matter what post graduate degree they've got tucked under their epaulet regardless of how it was supposed to compliment the braid and embroidery.  The very notion of a Command and Control culture background fights innovation and transformation when it is coming from the senior levels of management.  There are lessons to be learned from the Command and Control world, but when its unyielding dictums are applied too rigorously to those not already steeped in the culture the application spawns fear and loathing.  By all means let's find a place for experienced military and paramilitary leaders in the mainstream of the corporate world, but bear in mind that only a special few are equipped to take a seat in the C-Suite.

A thought for survivors

" I am not what happened to me. I am who I choose to become.”

—

Carl Jung

Living in my head and dealing with self-talk since the 'incident'.

There are a lot of rooms in my head, and always have been, but since the cerebral hemorrhage/stroke I have been taking inventory, visiting each of them to ensure that they aren’t empty, that everything is still there.  Oh sure, there is a certain amount  of disarray in the mansion that is my mind.  Its actualy quite roomy, and hasn’t been a studio type apartment for decades.  I haven’t really checked the place out for a while, so why would it surprise me to that  furniture has been moved around, and there are a lot of dust covered knick knacks and objet d’art, old books, music and odd little items that I had forgotten about that are demanding my attention?  There is  still so much more that needs exploring and re-examination to truly bring myself up to date on who I have become and how I got to here.  To be totally honest and truthful about it, I am spending way too much time in my head instead of getting on with the business of living my life as it is now.  And quite seriously, there isn’t a whole lot wrong with my life, even post stroke.  I’m not a stroked out zombie, even though I am still questioning part of my cognitive capabilities and ‘executive functioning’.  And of course, there is always the question of what to do about the ‘attention deficit’ which I continue to insist was there before the stroke.  If it didn’t or doesn’t hold any interest for me I have always been apt to promptly dismiss it, selfishly in some cases, and often the dismissal has been dependant on who was presenting.  The stroke has just become a convenient point for my family to leverage it, to be able to get me to focus on it without unduly riling me.  But as I explore the rooms in my head, I have discovered that I am easily irritated when disturbed.  My patience wears thin with the basic situation I am in.

Oh yes, and I do find myself obsessing about some things, like the status of my disability insurance claims and the technologies in the house that need updating and replacing, and the bloody awful weather, not to mention my dependence on family and friends to get around.  Complicate it all by stirring in the promises that I made to myself about what I would actually try to accomplish while I was off work, and the new dramas and traumas that are being reported to me by my team at work, and the antics of my darling wife’s family.  The frustration of my visual deficits just completes the distortions of an otherwise charmed life.

One of the core challenges with being off work, socially disconnected and forced into a situation that I have caught myself describing as being similar to ‘house arrest’, and the ‘living in my head’ is the temptation and the ease with which I can fall into patterns of negative ‘self talk’.

‘Self-talk’ itself is an interesting phenomenon.  I’m starting to think that self-talk is not that different than openly talking to yourself, the only difference being that at some point you cross the line to wanting to be able to speak it, and hear it, to understand the statements and questions you’re making.  So what is ‘self-talk’?  Well think of yourself sitting on the sofa watching television, be it the latest Ellen DeGeneres episode, or some sporting event.  At some point you get up to get a beer, or a cup of tea.  Normally you’d do this fairly instinctively.  Self-Talk is when you actually form the sentence in your head; “I think I’ll have a beer”.  It’s not about the getting up and getting it.  Its about the forming of the sentence in your mind that you then respond to.

I’ve heard the old saw that goes something like “at least when I talk to myself I know someone is listening, and I usually get the answers I want”.  But not all self-talk is as innocuous as it would seem.  Self-Talk in stressful situations and especially after a brain injury is your mind finding an alternate way to process thoughts and could be construed as a way that you are adding structure to your thinking by consciously forming the sentences in your head, that may never be spoken out loud.

As I wander through he rooms in my head, I indulge in the self-talk, often with statements like ‘well, that was dumb’, or more positive affirmations like ‘I can do better than that’.  But self-talk as a focusing mechanism has the downside of amplifying as well as focusing and in a lot of cases, we’re not at our best and we use the self-talk to focus on and amplify our less than stellar behaviours.  Remembering the assumption that we are the sum of our experiences, and that our core values and beliefs guide us through our day to day activities, self-talk latches on to those beliefs and values and can amplify and distort how we behave.  All that stuff that we have been internalizing over the years to help us move easily through the world and the way we interact with society and the people closest to us can become huge liabilities as we pursue recovery.  Our basic thought processes which are guided by our internalized learnings become the basis for self-talk which then become the situational reactions that those around us see.  On one level it becomes a bit frustrating because where we function perfectly well without self-talk on a regular basis, except for the occasional affirmation, when we’re ill, or dealing with the aftershocks of something as traumatic as a brain injury or stroke, we use self-talk a lot to get things back in perspective.  Is this the right approach or is it wrong?  I don’t know, but I do know that it has been helpful to me especially in the early days when I was coaching myself along the path to recovery, but now I’m finding it out of control.

Cognitive models basically suggest the following sequence and interdependencies.  So let’s assume we are presented with a ‘situation’.  Our powerful minds dip into our life experiences and teachings and sift through the core beliefs, learned responses and cultural biases to present the conscious mind with the automatic thoughts we’re used to using to move forward in the world, or with the language of self-talk to help us focus.  The automatic thought generation or the self-talk is a precursor or complimentary response to the overall reaction to the situation.  The Reaction is usually emotional, behavioural or physical.

The challenge with self-talk is that it both focuses and amplifies, and self-talk can then become very harsh and negative and can reinforce a slide into depression by amplifying anxieties.  We must maintain control.  Some of our beliefs and values about who and what we are may become unreasonable or unfair in light of a life changing event such as a brain injury.  We have to become flexible and compassionate about ourselves and our capabilities.