Broke all the Rules

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No planning – Just opportunities motivated by instinct

I am writing this in the wee hours of the morning because I am dealing with several side effects of attending an event that set me back. It’s not that I went into the event unaware and was blindsided. I wasn’t sure what to expect but I knew I would not emerge unscathed.

The fact that I am writing this when I would otherwise be sound asleep speaks to one of the side effects. For the past 3 weeks or more, as I have been doing some serious physical training, I have had no interrupted sleep. That is by far the longest stretch in over two years of finding quality sleep.

The past few hours have been different. My dreams have been wild. My dreams seemed just a bit too real, not being able to discern dream from reality. My dreams have been unsettling and upsetting. And right now I am wide awake because I can’t get back to sleep.

What got me into this

For one day I had put aside the intentional planning that my occupational therapist has been drilling into me for the past year. I did not work out a back up plan, unless retreating to a quiet place qualifies as a back up plan.

And yet, as I look back on the evening, I realize I have developed some habits that protect me from sensory overload and succumbing to extreme neural fatigue. I know to seat myself in an auditorium so that I can make an inconspicuous exit. Exiting from a venue that seems to cause disruption, perceived or real, adds significantly to my sensory loading and therefore my recovery time.

My decision to attend the event was a calculated decision based on an anticipated Cost/Benefit consideration. That’s why I am not surprised to come away from the event feeling content despite having my day, or rather night, significantly interrupted. I chose to attend a 50th anniversary celebration of an institution that I have been well connected with for 30 or more years. The sense of contentment in the middle of dealing with disruption comes from the affirmations that I serendipitously received in the course of the evening. At the same time, the sense of contentment comes from hearing from different people and how they are doing.

Modifications I find helpful

Large groups wear me done. With larger groups the negative effect is exponentially greater. The level of noise is a minor factor yet becomes significant over the course of a couple hours. More significant is the processing of too many sensory impressions in a short block of time; following conversations, reading body language, interpreting tone of voice, looking for segways into a conversation, and managing the emotions of the moment.

By seeking out quieter places, places with fewer people, I found myself engaged in one-on-one conversations and avoiding the complexity of small groups. By keeping myself visible in the quieter areas, people I know and have worked with ended up finding me and so I didn’t feel isolated.

Being in a banquet hall with 6 people at my table and another 300 guests in the hall is quickly overwhelming. I intentionally engaged with only the two guests on either side of me rather than the whole group at my table. The second modification that I made was to arrange with one of the guests at my table to text me at certain junctures in the event. So after some initial introductions I left the hall for awhile and re-emerged from time to time to catch the key elements of the evening.

Managing expectations

A big part of managing my ABI symptoms has to do with managing my expectations when I attend an event that I know will likely set me back. That’s where the Cost/Benefit plays a significant role. It might seem a bit selfish, but if the event won’t give me a boost then the negative after effects become a burden, threatening to cause a downward spiral that is clearly counter productive.

Blessings

20170509_101659The event has left me with many wonderful memories. By keeping my expectations low, yet allowing myself a certain level of vulnerability, wonderful experiences did emerge. I can recount many wonderful moments but let me share a couple of notables.

I had one mother of a former student share a number of experiences with me. The one she was most eager to share was how her daughter missed the whole first week of school. She was too nervous to bring herself to accept me as her teacher. In the end she decided that I had been her most inspiring teacher. I recounted with the mother her daughter’s strengths (from 15 years ago) and was not surprised to hear what activities she is presently doing.

After sharing briefly with one former colleague he offered to pray over me, to request healing. To me it spoke to his strength of character and his sense of ministry. And so there were a variety of different kinds of sharing throughout the evening that left me encouraged, hopeful and with a sense of being surrounded by people who care and seek to be supportive.

It might take a day or two to recover but after an event like last night it is not a discouraging or frustrating walk. The power of prayer, the power of living in community with arms reaching out, takes down the walls of isolation that an acquired brain injury easily creates.

And now, I’m ready to sleep some more. I need to be ready to do a short presentation in the morning – part of measured planning albeit, this one has a back up plan.

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Detective in Training

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Never mind how I ended up here. How do I get out?

Living life with ABI comes with many surprises and unexpected turns. That makes the outcome of many days very different from what I expect or want. It would be very helpful if my days could be more predictable and therefore be able to count on following through on commitments that i have made or would like to make.

There is a Chinese curse that says, “May you live in interesting times.” Unpredictable, unexpected, unmanageable are all descriptions that defy being able to follow through, unless I make contingencies. The contingencies planned into my day can make the difference between a successful day and a bad day. The contingency planning takes on a variety of forms.

Driving

The contingencies around driving can get quite involved. First of all, I schedule a break every hour. In addition I try to arrive an hour ahead so I have time to recuperate from the drive (or ride) if I’m expected to participate in an event. Recently I did a favour for my son, offering to pick up a furniture order for him at IKEA. I contacted him mid day after completing my own errands that I was fine to follow up with my offer. When I was 20 minutes from IKEA I realized my sensory loading was ramping dangerously fast due to neurological fatigue (a couple of unexpected factors had inserted itself into my day). When I got to IKEA I realized that I would not be able to make the long drive home. I contacted my son and explained I was at my limit. And so our back up plan kicked in. I met up with him so that he could drive most of the trip home.

Restaurants

The contingency planning for going to a restaurant involves very different factors. Depending on the size of the group or the busyness of the restaurant I have to make a few decisions. If we are with a large group or the restaurant is quite full, I will walk in, check the menu, let someone know what I would like to order and then leave the restaurant. Once the order arrives I will come back. Once the hectic activity around ordering is done, I am able to participate. This is where texting can be very handy.

If the restaurant is quiet, I will do my own ordering. However, when the waiter or waitress is rattling off the specials of the day I zone out – that’s too much information to process, remembering the different items, comparing the benefits etc. I am better off reading the menu because I can process the information at my own pace.

Large venues

The contingency planning for attending events is to have an ‘escape plan’ in case I need to leave the venue. I look for seating so that I can exit as inconspicuously as possible. For some events I end up exiting and returning several times. Sometimes I find I need to leave a venue within 5 or ten minutes. I return when I have recuperated a bit or when the activity changes.

My shortest time in a venue before making an unplanned exit was about10 seconds. I had slipped in with a friend just before the event was ready to start. Luckily we were able to grab the two remaining seats by the exit. As we took our seats, all 800 people stood up as the music began. With 800 voices, live music on stage and wonderful amplification the effect hit me like a proverbial brick wall. By the time I realized what had happened and had the where with all to head for the exit, about 10 or so seconds had lapsed. It took me over 10 minutes to recover from the initial effects of the sensory overload.

Making sense of it

While I plan for contingencies, I also need to learn from situations in which I experience sensory overload. At times two seemingly similar situations end up creating two very different outcomes. While to the untrained eye the situations can look identical, it takes a different level of awareness and observation to recognize the differences.

I recently had two seemingly identical experiences. I walked into church well before the worship service was to begin. The pianist was rehearsing and all seemed fine. I later concluded that the music and the extra 15 minutes helped me make the transition into the worship space.

Fast forward a few weeks later. Remembering the earlier experience, I decided to enter the church sanctuary extra early again. Once again there was piano music playing and a soloist rehearsing before the worship service. Within two minutes I realized I needed to get out. The reverberations within an almost empty room from the live music overloaded my senses. Disappointing but an eye opener at the same time.

Making sense of situations when one is living with ABI often requires having the keen sense of Sherlock Holmes to properly debrief the day. Then combine that with the foresight of a prognosticator in order to successfully plan a day. Those two activities have become a necessary part of an ABI life to varying degrees.

Nothing happens without a reason

I always start with the understanding that there is an explanation for each time I experience my limitations. If I properly consider all factors then it should not take me by surprise. It’s not just being aware of the sensory loading caused by the activities that day, but also the amount of sensory loading from the previous day or two. Having a good night’s sleep doesn’t reset my sensory loading ‘meter’ back to zero. The other factor to consider is the significant events I’m anticipating in the next few days.

Each session with my occupational therapist is like ‘writing’ another chapter in solving my personal ABI detective case. More importantly, each session I have with my OT is another lesson on being trained as a detective.

C3PO

You are approaching your resource limit (orange light flashing)

Halt all non-essential activities

If one ignores the above warnings then things deteriorate further

You have exceeded your resource safety buffer (red light flashing)

Non-essential systems are shutting down

Halt all activity! Halt all activity! Halt all activity (audible warning)

Failure to comply will result in a lengthy shutdown of numerous systems

Be advised that full functionality may not be restored for up to 4 days.

With a computer there is always the option of doing a cold reboot or to carry the analogy further, run a virus scan, malware scan or optimize the drive. And if all else fails, re-install the operating system.

But I am not a robot and so I do not have such obvious early warning signals. I am not a robot and so a cold reboot is not possible. That’s why I need to be mindful of what I am doing and how my body is responding, physically, neurologically and emotionally at all times. My body has about a dozen warning signs but I need to learn to recognize them more readily. The more mindful I am, the better I will be able to function. The contingencies need to be part of my schedule so I can respond to the signals my body is giving me.

The main consideration for any activity that I do is the Cost Benefit. Every activity contributes to sensory loading and puts me at risk of sensory overload. Each time I need to decide what value I put on the potential benefits.