A Weekend Away – A Punishing Experience

20160418_162024
A Log With a View

A weekend away sounds like a great way to relax. For someone with traumatic brain injury (TBI) it is anything but.  Let me explain how my weekend away experiences have unfolded.

Why would a motel not be relaxing? Taking advantage of amenities like an extra big bed, a big television with more channels than the one at home, and a pool, to name a few obvious ones, sounds great.

While spending three days at Niagara Falls, which we have very much enjoyed in the past, I made a note of what was different. I noted how the experience was different from being at home. In brief I experienced headaches at an elevated level, increased level of fatigue and cognitive overload combined with some disorientation as part of low level sensory overload.

The three day visit to Niagara Falls began with a three hour drive, including navigating the 401 through Toronto. (See my blog entry “A Case for Backseat Driving.”)

motel firewood
Bring in your own firewood to heat your room

The routine of checking into a motel doesn`t seem like an onerous activity. What makes it significant is that the routine is different. The challenges stem from being outside of a familiar environment and comfortable routines.

Doing the check in required responding to the clerk`s questions. Providing the reservation number which I had in hand was simple. I had anticipated that one. Next was the request for the car license number. Oops, hadn`t anticipated that one. Normally I would have had it memorized. After that I couldn`t keep track of the additional services and upgrades that were available so I just declined them all. Besides, I`m too frugal to splurge.

The check in wrapped up with the clerk giving instruction on how to get to our room, as well as some other helpful information. The instructions came at me too fast. She mentioned the pool hours. I couldn`t process the information quick enough. Resolving this would put me into a low level problem solving ordeal.  Rather than deciding how to deal with the information overload, I simply thanked her and walked away.

20150924_181019
Digesting Food Overlooking the Horseshoe Falls

As I walk away I’m thinking, “Forget about using the pool.” Trying to swim in cold water would definitely result in sensory overload since the three hour drive had brought me close to my threshold. “A hot tub on the other hand would be great.”

We were assigned a 200 series room number so we headed to the elevator. The clerk’s instructions had evaporated into the ether. We stepped into the elevator and pushed the button for the second floor. The door closed but the elevator didn`t move. I was puzzled. We stepped out of the elevator and were told we were already on the second floor. I didn`t realize that the back entrance was on the first floor. We had come in through the front door which automatically put us on the second floor. They shouldn`t be allowed to build motels that way.

As I stepped out of the elevator I’m thinking, “If I was at home I could have been relaxing on the couch.” I would have unlocked the front door, stepped inside, tossed my jacket aside and settle into the couch to read. Simple. No brain activity required till I started reading.

Eating breakfasts and suppers at various restaurants means the brain is taking in new sounds and new pattern of sounds. There are no familiar routines to fall back on. When walking into a restaurant you want to know where the washrooms are, whether to wait to be seated, what part of the dining looks good. And then there are the many other things one naturally assesses when walking into a strange place. This is followed by figuring out the menu, while the waitress rattles off the specials of the day. If I’m alert enough I remember to make my choice when I hear something that sounds good. I then tune out of the rest of the waitress’s spiel. At the same time I make a point of repeating my choice to myself so I`ll remember it when I`m asked.

GE DIGITAL CAMERA
Breakfast, Lunch or Supper

I’m thinking, “If I was at home I’d just eat what shows up on the table.” I would only have to decide whether to have a second helping or not.

The first time I experienced a motel stay following my acquired brain injury (ABI) was in a city only an hour from home.  I was baffled by the fact that the visit was not relaxing. The trip to Niagara Falls happening almost a year later was not much different. I wanted an explanation for what I was experiencing. The experience is likely a bit different for each person with an ABI.

What in the World is my brain trying to do?

What follows from here is how my symptoms of headaches at an elevated level, increased level of fatigue, cognitive overload and a dose of sensory overload, might be linked to certain dysfunctions or confusion in the brain.

The autonomic nervous system (ANS) is the part of the brain that is designed as our early warning system meant to protect us from potential danger. When the body senses danger it gets ready for ‘flight or fight’. As the shot of adrenalin activates the body, the heart rate increases, t

20150924_193332
Entertainment with supper

he muscles are activated for movement, the pupils dilate, etc.

When the brain gets the sense that the danger has passed the Parasympathetic Nervous System (PNS) takes over. The body gets the message that it’s time to calm down, and so the body goes through a restorative process to bring the body back into equilibrium.

When the brain has experienced an injury, it is at risk of developing ‘sensory defensiveness’. The ANS is triggered by threatening sounds like a car horn or screeching brakes. The ANS is also triggered by non-threatening sounds and sensations. When a person is in an unfamiliar environment, the brain is bombarded by many sounds and other input that it is reacting to. When the ANS is overworked, the PNS doesn’t do an effective job of bringing the body back into a healthy equilibrium.

When the nervous system is over-responsive to sensory input, the Sympathetic Nervous System is overshadowed by the Parasympathetic Nervous System. As a result too many non-threatening sensory inputs are not received as ‘rest and digest’ responses but rather ‘fight or flight’ responses.

If the PNS is seen as the accelerator and the SNS is the brakes, they would be working against each other. (It’s like driving a car with one foot on the accelerator and one foot on the brake.  It would wear everything out very quickly as well as waste a lot of energy / fuel.)

The ANS is regulated by the hypothalamus. That’s the area of the brain just above the brain stem. A person without an ABI would have the Sympathetic Nervous System work in a complementary way with the Parasympathetic Nervous System.

SVFF artist
Shelter Valley Folk Festival

With the constant acceleration and braking happening in the brain, mental fatigue begins to manifest itself in the form of the person becoming distressed and agitated. The distress and agitation can linger long after the sensory input has ended.

On a number of occasions it took me over three days to recover from the sensory input. The more prolonged the sensory input the longer it takes to recover.  One such occasion was an hour long procedure at the dentist. I didn’t want the dentist to quit when he was almost ready to put in a filling. So it was a matter of holding myself together till the ordeal was done.

On another occasion I was at a musical event. About twenty minutes into the performance I realized I was going into sensory overload. Since I didn’t have the capacity to let myself out of my seat, passing in front of seven or eight people I chose to put up with the ordeal till the intermission.

Shelter Valley
Main Stage at SVFF

Gradually I have learned what type of events makes me succumb to sensory overload. I will avoid folk festivals, musical performances, parades, dentists and movies portraying real life experiences of heartache and overcoming challenges.

With an Acquired Brain Injury a weekend away feels more like putting in overtime than having a relaxing few days. Is staying home the option? Should I just let life pass me by? Not if I can help it. Whenever there’s an opportunity I will definitely choose in favour of a weekend away.

A Case for Backseat Driving

20160408_162331
Kennedy Rd, Camborne Ontario

Not recommended, but one effective way to explore the brain’s complexity is to observe the changes which happen following a brain injury. Changes in brain functions invariably translate into changes in behaviour. At times the bigger challenge is lacking the vocabulary to make sense of the changes. What is mental flexibility?

Recently, while being assessed by an occupational therapist I was asked about my mental flexibility. Following her explanation I realized how my altered mental flexibility was impacting many different activities. I had not understood the connection between seemingly disparate activities. Why did activities that seemed unrelated present problems? This has baffled me for some time. It would be comforting and simplify things if similar compensatory strategies could be employed in these seemingly dissimilar situations.

Character trait

My general nature is one of being flexible and accommodating. I am usually fine in rolling with a sudden change of plan. It keeps life interesting. I am beginning to realize that my willingness to change plans no longer matches what I am able to do. The spirit is willing but the brain won’t stand for it.

Helping a friend

I had arranged to give a friend a hand with his flooring one day. We had discussed the arrangements the day before. I had organized the tools I needed. I had an overview of the work. And I had thought through some strategies for doing the job. When I arrived the next morning he asked me to give him a hand with something totally different. Within an hour and a half I was in trouble. I was experiencing increased fatigue, I was finding it difficult to focus and my body was giving me signals that I was approaching sensory overload.

Had I gone ahead with the original plan, I would have been good for about 4 hours. Because of the sudden change in plan, my brain was still on the original track. My body meanwhile was doing something quite simple and physically quite easy. However, my brain was out of sync with my body.

Driving a car

20160408_152156
Northumberland County Rd. 9

The first few months after the accident, driving was a real challenge. I decided at one point that my reaction time wasn’t quick enough to make it safe to drive. I remember one particular trip into town. As I approached the intersection the light turned red. I saw it turn red. I knew that a red light meant stop. I knew where the brake pedal was. But it took several seconds before I realized that I needed to apply the brakes. The incident made me realize it took my brain too long to switch gears when processing real time information.

20160408_153152
Rice Lake Dr. Gores Landing, Ont.

I am able to drive safely again. However, I often find myself a passenger in the car. My endurance does not allow me to drive longer trips. At other times I don’t drive because I’m dealing with other symptoms that could interfere with my driving.

Riding in a car

Being a passenger in a car presents mental flexibility challenges. The problem is drivers that have different driving habits than mine. With some drivers I get nauseous. With other drivers I develop fatigue. Getting headaches is also not uncommon.

20160408_162953
Jamieson Rd, Camborne, Ont

 

After having driven for more than 45 years, even as a passenger I am fully aware of traffic when I am in a car. I can’t ignore the driver’s habits. I notice lane changes, the change of speed, the space between me and the vehicle ahead, traffic slow downs, merging traffic, left hand turns at intersections and other aspects of driving. Each habit that doesn’t match my habit causes mental jarring.

Did I say my driving habits are better? Unfortunately for my wife her driving habits are more courteous than mine. Often enough she accuses me of being a backseat driver.

To my defense, I’m not a backseat driver. I make driving suggestions to avoid mental fatigue. Time and again I need to decide which is the lesser of two evils, being accused of backseat driving or dealing with a buildup of mental fatigue. Even deciding that is difficult because my ability to problem solve has also been compromised.

20160408_155153
Lander Rd. Gores Landing, Ont.

As tough as it is on the driver, my backseat driving should not be taken as a judgement of their driving competence. It is a commentary on my ability to cope.  I see myself as the navigator riding shotgun.Somehow that defense doesn’t get much traction with Jane. But it’s actually me navigating my own mental fatigue.

Things have been improving. I don’t think it is Jane’s driving habits. (Why would she be taking notes on my backseat driving commentary?) My mental flexibility might be improving a bit. I think most of my improvement is adjusting to her driving habits. My brain is being reprogrammed.

Working with an Itinerary

Recently Jane and I made a trip to London. That’s a trip of about 3 hours. Since my daughter is aware of my mental flexibility challenge she sent us an itinerary for the three days we would be there. She described where we would be sleeping. She explained what part of the packing she wanted me to do for their up-coming move. She gave a breakfast and supper menu for each day. It was more than I needed but the thought was much appreciated.

Despite the advanced planning, which was much appreciated, the time visiting and the couple days after returning home were a challenge. Being in a new location for a few days means the brain is working overtime because it cannot rely on familiar routines. (More on that another time.)

Playing Snakes & Ladders

A new challenge presents itself when I play Snakes & Ladders with my grandson. After finishing a game he will want to switch each player’s colour as a four year old is wont to do. It’s not easy talking a four year old out of an idea. Now I’m in a double conundrum. Either go along with t20160407_093538he colour change at the risk of added fatigue or use my problem solving skills which have been compromised. I need to find some novel reason that appeals to a four year old that it’s better to keep the same colours. Appealing to his sense of humour is the best strategy.

Observations

20160408_155025
Oriole Beach Rd. Gores Landing, Ont.

 

Dealing with mental flexibility is like driving down a road that’s as straight as an arrow. When the road suddenly makes a turn I keep going, hitting the gravel, going through the ditch and possibly into a rough field. Needless to say, that is hard on the car. Living like that is hardest on those closest to me. It requires them to be more flexible, compensating for adjustments I can’t make. Having a label is both reassuring and makes the experiences seem less problematic. It also helps when sharing with others.

The ability to be mentally flexible is just one of many fascinating functions which the brain regularly performs, seemingly effortlessly. There are so many other subconscious, involuntary vital functions that the brain performs continuously. When the brain functions according to its design, the subconscious functions don’t need to communicate with the conscious decisions a person makes. The subconscious functions simply manage to keep everything running smoothly.

20160408_160210
Beaver Meadow Rd, Plainville Ontario

It’s amazing that our brains don’t run into hiccoughs on a regular basis. No regular night time updates needed to address faulty functions that were overlooked in the original design.

 

The conundrum of dealing with a brain injury is that there is no backup system that can step in to make sense of what is not working properly. It’s as effective as lifting yourself up by your bootstraps. That is why support from family members and the community I live in make a big difference.