Visibility – yes or no

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Sand, Sun and Shade

The hidden nature of my disability was brought into amusing focus. Walking along the beach on day, while on a recent holiday, I overheard two people talking. The comment that caught my attention was, “Oh there’s the man with the broken finger.” Later in the day, someone who I had met a few times was concerned when he saw my hand. Was I okay? How did it happen? Do you need a hand? (No pun intended.)

The irony is that the attention this nuisance injury got was wildly disproportionate to the attention my ABI had gotten considering it’s ongoing affects on me.

The response I got to my injured finger reaffirmed in me that at heart most people are considerate. Even what looks like a minor injury is given the benefit of the doubt and people take the time to ensure that all is well and things are on the mend.

As I deal with my ABI some people are in tune with when I’m struggling due to a set back. Others are totally oblivious or choose to ignore the times I struggle. Either they don’t notice or they notice but are uncomfortable and don’t know how to deal with it.

At times I have been dealt harshly by people who took offense to my actions or responses rather than having my actions understood in relation to my ABI. In comparison, if my leg was in a cast no one would take offense if I fail to run along with them when invited. For people who don’t understand ABI I can’t expect them to give me the benefit of the doubt each time.

Symptoms

Most of the  time I am not dealing with an exacerbation of symptoms. On the good days I simply need to be  mindful of my limitations and avoid activities that create stress or sensory loading.

As much as I try to avoid situations that become cognitively too demanding, resulting in neurological fatigue, there are times that it does happen. The longer the stressful situation persists the worse the after effects are, requiring longer recovery time.

The symptoms are multi-faceted. At times the symptoms begin to manifest themselves subtly while I’m in a ‘stressful’ situation, other times my whole body begins to shut down noticeably while I’m clearly beyond my limitations.

Let me describe what happens if I’m in a protracted discussion in which I need to resolve a conflict. Fortunately this is a rare occurrence.

A difficult discussion requires several skills that for me are seriously compromised. Problem solving has gone out of the window. I can’t think on my feet. Initially I can engage in the discussion, respond to questions, or explain myself.

If I’m being mindful I will notice that I gradually shift from being actively engaged to moving into a listening mode. My verbal responses will become more intermittent and brief in nature. Gradually I will not be able formulate a coherent response. I will find it increasingly more difficult to process what I’m hearing, evaluate the import of the comments and decide what requires a response. At this point the mental process of remembering the salient points, and formulating a response becomes laboured. As neural fatigue becomes more pronounced I become unable to respond to even straight forward information of fact. My memory starts to fails me and leaves me unable to correct errors of fact.

Once I can no longer comprehend basic questions I know my body begins to physically shut down. The neural fatigue affects my muscle coordination and my emotional vulnerability. At that point I know I need to remove myself from the situation. Hopefully the opportunity avails itself sooner rather than later.

When I am experiencing neural fatigue I notice that it most directly affects the part of my brain that controls several important functions; sleep patterns, emotions, body functions like hunger, temperature response, memory and a natural defense response to my environment.

Recovery

In the following three to five days that it generally takes to recover a number of things happen. The first day or so I will have a headache at least part of the day. (At this point in my recovery headaches have thankfully become uncommon.) Walking will be more difficult due to a loss of muscle coordination. If I approach the top of a stairway, I need to pause before I take the first step down. I need to make sure that my brain has adjusted to the change. To miscalculate the first step would put me a risk of falling down the flight of stairs.

After sitting for longer than 15 minutes standing up and walking becomes a difficult transition. The lack of muscle coordination makes getting up awkward. Often I’ll need to support myself and focus on my balance while attempting my first few steps. It’s like my brain is waiting for a cheer leader to get me moving.

The neural fatigue, even though it slows down my brain functioning, doesn’t let me simply nod off when I want to sleep. The neural fatigue directly interferes with my ability to sleep. It is common to have a couple nights with only 3 or 4 hours of sleep. I try to augment my sleep by napping during the day but rarely manage more than a half hour to 45 minutes. The neural fatigue results in my brain not being able to prioritize functions. I’m not able to filter input and as a result I’m not able to put aside ideas or impressions that keep me awake.

Listening to a radio program or reading is one way to redirect my attention so that I can fall asleep. However, my sleep is easily interrupted and leaves me feeling tired on waking. I know I’m making progress once I’m able to nap for an hour and a half or longer. (Any nap over 30 minutes is not really a nap because it’s long enough to put ones body through a complete sleep cycle.)

During the first couple of recovery days, answering a phone call, or meeting a visitor at the door is disorienting. Initially my response is quiet and my tone is guarded. The response to a call or a visitor puts too much demand on my mental resources; who is calling, what do they want, what is expected of me. Taking in all that information while at the same time formulating a greeting is taxing and happens with awkward pauses. It’s not the split second reflex that I could handle pre-ABI. As a result my tone of voice will not sound very welcoming. My slower response leaves a second indicator that could be interpreted as annoyance at being bothered.

In the first couple of days I am emotionally vulnerable. Any additional stress such as hearing bad news on the radio will stop me in my tracks. Any bad news about family or friends will affect me in an exaggerated way. During this time I avoid documentaries, videos or books that deal with topics of loss or pain.

Least intrusive is experiencing double vision during the first day or so. When it first happened I didn’t notice it. One day it dawned on me that I was seeing signage with a shadow effect. I couldn’t recall which store signs actually had that effect. I knew for sure I was dealing with double vision when road signage had the shadow effect.

My short term memory is compromised during those first few days. I will find myself forgetting simple things. Remembering a second errand will have disappears while walking across the house. That in itself reminds me to slow things down for a few days.

When I’m going through a 3 to 5 day recovery time most people are not aware that I’m struggling. Those who know me do notice and give me space and time.

Visible or Invisible

The visible reminders that come with open wound injuries has the benefit of being understood and people giving due consideration. While that might seem helpful, it also comes with a continuing reminder that you are dealing with an injury. Sometimes I don’t want to get a reminder.

When dealing with ABI there are no obvious visible clues to remind others when I am experiencing a difficult phase in my recovery. At the same time, I wouldn’t want my struggle to be openly obvious to each passing stranger. There is comfort in having a certain amount of anonymity.

I’m encouraged when I’m dealing with someone and they comment, “Doesn’t look like you’re having a good day.” I very much appreciate it when in response they make some accommodations or ask how they can be of help. I don’t mind when people want to clarify their observation. It’s helpful for both of us. It definitely helps avoid the hurt or insult that happens when someone is oblivious to my condition.

Part of good social etiquette is tuning in the the person you are talking to. We might not tune in when we are in a hurry or we have something urgent on our mind, but it helps us communicate more effectively when we are mindful of our default position.

(I didn’t think it was appropriate to post a picture of my ‘talking finger’ extended in a cast. Just saying.)

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Author: Jasper Hoogendam

After 36 years as an educator my career ended due to a TBI. Renewable energy as part of 'walking lightly on this earth' has been and continues to be my interest since my teen years. Since early 2015 I have been learning to live with ABI (Acquire Brain Injury). I don't want to let my ABI limit the goals I set for myself. I'm living with a different brain, not a lesser brain. In sharing my day to day successes and struggles, I am better able to understand how my life had changed and begin to accept the change. In sharing my experiences I'm hearing from caregivers and fellow ABI's. I'm encouraged when my experiences are helping others understand some of the complexity of living with ABI.

6 thoughts on “Visibility – yes or no”

  1. This is a beautifully written clear post, and important to write. It amazes me that with the variety possible with brain injuries, there are still so many similarities between them. Everything you have written here I can remember from when I was in recovery. It was always shocking how a stressful/tiring event could affect my ability to walk, talk and reason. And since I tended to hide away at these times, very few people knew what was going on, and they didn’t understand how much they could affect me with thoughtless comments. But you’re right, people are compassionate on the whole, they just need to understand what is happening, which is why posts like this are so very important. There is little information about brain injury available, mostly just the sensational side, so every attempt to explain, matters. Wishing you a calm and beautiful day.

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    1. In the first few months following my ABI my response to even minimal stress or sensory overload resulted in an unpredictable array of symptoms and side effects with unpredictable recovery timeframe as I was recovering from each social event. Now two years in my resilence has increased. My response and side effects as I described above to socially stressful situations has become quite predictable. While on the one hand it creates a certain level of frustration going down the same path each time, on the other hand I appreciate that the familiarity gives me a reasonable gauge to measure the progress of my recovery following each incident.

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      1. It sounds like you’re doing great, having such a clear understanding of yourself – I appreciate it may not feel like it, but from what you explain, you’re doing brilliantly!

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  2. I’m doing fine as long as I don’t get impatient with myself. I live with a supportive family and for the most part a supportive local community. The times when I need to deal with the challenges that other people place on me are informative and in their own way helpful in gaining insight into my own limitations. Thanks for your words of encouragement.

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  3. Reading is hard for me, but not with your piece – written with such clarity. Thank you. “When I’m being mindful…” – that’s the key. I wish I would be more often. As fatigue grows I become less aware of myself and those I’m with, too. But I do not go into a “listening mode,” I go into a “talk” mode – not listening at all. The effect is of being rooted to the spot despite being “absent.” I keep going, exhausting myself until the tipping point. I know the warning sign but don’t heed it. My vision is the “canary in the coal mine.” I have double vision in each eye all the time, and when I get exhausted my eyes don’t focus as a team either. But even when the world is a mess of shimmering duplicated images I’m not mindful, don’t retreat. (like now… I’m really really tired, but I’m still writing on the screen I can barely see) Better sign off.

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    1. When I experience fatigue I begin to see double. Tonight all lights were the shape of Christmas trees. I looked into the distance and wondered what flash back to Christmas was happening. I also have difficulty knowing how to end my ‘talking’. I don’t stop because I don’t know how to wrap it up. However, in the situation I described I was very cognizant of not saying something I would later regret. It was an unusual situation with different things at stake. In an earlier post I describe a dozen signals my body gives me, but often I still miss the cues.

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