Domino Effect

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Mystery part

Domino Effect.

A break in routine should not be a big deal. Little did I expect the domino effect it would create. Given the strenuous nature of the activity I should have had some inkling.

I was the last of 85 cyclists to leave camp that morning. In hindsight I should have left later. Being the last rider did not concern me as we were scheduled to meet at the 120 km point in the century ride for a photo op. The midpoint was a milestone, an occasion not to be overlooked. It had been 3490 km since we had dipped our tires in the Pacific Ocean, with 3490 km to go before we would dip our tires in the Atlantic Ocean.

I arrived at the midpoint with a little over an hour to spare. I was a great opportunity to take in a nap… well, more to the point, a nap just happens when I relax after being very active for a few hours.

Failed recovery

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Steam whistle

After the photo op I completed the last 40 km of the century ride for the day. With the long break in the early afternoon and the heat I arrived in camp knowing that my recovery protocol was essential. I couldn’t afford any short cuts or missed steps today.

This is where a seemingly very good day began to unravel. I didn’t have sufficient time for the full recovery protocol. I had set up my tent and prepared my recovery liquids as expected.

About forty minutes into my recovery time, supper time was announced. I had relaxed a bit, but had not had the benefit of a nap (a key element for brain recovery). The nap at the midpoint was to blame. I decided to get up and head over to the pavilion some 200 meter away. Missing supper was not a good option.

My walking was very slow and difficult, not a good sign. As I approached the pavilion with almost a hundred people engaged in animated discussions I looked for an empty spot near the edgge. No luck. I knew I couldn’t take the level of noise in the middle of the pavilion.

I chose a picnic table about 30 feet from the pavilion. By this time, the effort of walking, the unsuccessful attempt to find seating, added to my sensory overload, further reducing my functioning to the bare essentials. I sat down at the picnic table in tears.

The other term that is used instead of sensory overload is the term flooding.

Shortly one of the support drivers came over, having decided something was amiss. She asked me what was wrong. As I was unable to say anything coherent, she followed up with insisting that I tell her what was going on with me. Good intentions but the last thing I needed was to be flooded with questions. My brain was too fatigued. I didn’t need help. I just needed a quiet place with no questions adding to the flooding.

A second person came over out of a sense of caring. He asked me a few questions further adding to my flooding. Again, I was not able to give a coherent response. He suggested I move over to the group not wanting me to feel isolated. He insisted I was among friends and didn’t need to shrink away from them.

Had I decided I felt too vulnerable in my condition I would have foregone supper and remained inside the safety in my tent. I had chosen to join the group because I trusted this group of people based on the generous support I had experienced earlier in the tour.

I managed to convey that I simply needed a quiet place. In response the fellow decided he would join me for supper and just wouldn’t talk so I would have the quiet space I needed. An interesting choice for which I had no objection.

While I was eating my supper a kitchen staff member came over to me and simply put her arm around me. No questions. No need to know what was happening with me. Without adding to my flooding, I could simply convey my appreciation by putting my arm around her. No need for words, yet an unambiguous sharing of support and appreciation.

After thoughts

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Flywheel

I have meanwhile arranged for an advocate to step in should I have another situation of sensory overload or flooding. I would simply refer the well meaning help to my advocate so that attempts to help me doesn’t add to my flooding.

Once again, I have stumbled across a situation that is hard to plan for. I did not have my regular support people near by. It’s just not possible to plan for all eventualities. Can’t be done. How does one plan for the unexpected?

For most people it’s hard to understand how to deal with someone who is neurologically atypical. Their experience with neuro-atypcial people might be rare or non-existent. Trying to help becomes counter productive. Without some careful reflection, the situation can continue into a downward spiral when the necessary answers or responses aren’t forthcoming.

In thinking aloud, I do wonder whose needs are being met with the questions that were put to me. What information was essential to my well-being at that moment?

Suggested guidelines

When someone is experiencing ‘sensory overload’, or ‘flooding’ or severe neuro fatigue, it is most helpful to keep things simple. My suggestion is to focus on whether the person is in a crisis that would require emergency action. The two most helpful questions would be:

1. Are you in pain?

2. Do you need help?

Both of these questions can be simply and clearly answered with a nod or shake of the head.

Some helpful questions could be:

1. Would you like me to keep you company?

2. Are you fine where you are now?

These questions while being less intrusive can be just as effective in assessing what help is needed with neurologically typical people as well.

Comedy

One way to determine the difference between a person who is upset or distraught as opposed to experiencing sensory overload or flooding is to use humour. It might seem strange to use humour when a person is in tears. A person who is experiencing sensory overload or flooding is not able to respond to humour. Since the key purpose of the intervention is to determine whether additional help is needed, using humour would not be considered inconsiderate or out of place.

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Reynold – Corlis steam engine
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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.)