I recently reached the one year point since defining a baseline. The baseline is a blog posting I composed a year ago. I outlined in general terms where I am in my journey of recovery. Or to state it more accurately, I outlined in general terms the point I was at in my adjustment to living as a neural-atypical person in a neurologically typical world.
The struggle is daily, not that there are set backs every day. It’s that a setback can occur at the most inopportune times. This unpredictability makes it difficult to commit to certain requests for volunteer help in which last minute cancellation creates a problem. It also means, that despite taking measures to minimize my sensory loading before a significant event, something can happen that will very quickly trigger sensory overload. It’s not unusual to be nicely humming along with my day and then find myself struggling seriously ten minutes later.
It’s the unexpected setbacks that makes it hard to recognize progress or improvements. It requires more than simply tracking the amount of time between setbacks. The lack of seeing noticeable improvement can be discouraging to say the least and at times the recurring setbacks brings with it a sense of tiredness from dealing with neural fatigue.
Benchmark as I defined it a year ago
It’s three years and counting since my mTBI (minor traumatic brain injury) and I’m experiencing fewer new successes. I’m gradually realizing that new successes are the greatest inspiration for hope and anticipating further healing. Even if the successes are small.
I long to see improvement in specific areas. I look forward to being able to visit someone who lives a two hour drive away and not arriving exhausted. I look forward to ordering and eating a meal in a restaurant without becoming overwhelmed. I look forward to being able to enjoy larger social gatherings without being mindful of taking regular breaks from the event.
As the time between new successes increases, it’s easy to become discouraged. I risk being pulled down by the predictable situations that remind me too clearly of my limitations;
- my brain becoming ‘mush’ one minute of exposure to loud or jarring noise,
- my emotional fatigue five minutes into enjoying live music,
- my neural fatigue ten minutes into a conversation,
- my attention waning fifteen minutes into a presentation,
- my restlessness kicking in twenty minutes into an unfocused social gathering.
My limitations have a way of colouring many of my activities, namely cutting them short or ignoring the signals my body gives me and risk needing one, two or more days to recover.
A key part of my life has been life long learning. As an educator, learning is part of living. Exploring new areas can be exciting and lead to new insights.
Learning to live with ABI, while exposing me to struggles and disappointments also introduced me to a fascinating new world. Learning from my limitations I’m finding out how truly amazing the human brain is. Learning the nuances of my injury, the apparent ambiguities of what seemed to work one time and not the next time. The learning ran much deeper than academic learning. The learning was real and poignant. I was living it. The things I learned about brain injury were being understood at a visceral level.
Initially when I would experience limitations, there was some disappointment but it was balanced by the fascination of recognizing another nuance to my limitations. Gradually I’m learning what my changed ability and activity profile looks like.
At this stage of coming to terms with my ABI (acquired brain injury) it is easy to become discouraged. I’m often left wondering when I experience a particular setback whether that is one that becomes part of my ‘permanent limitation’ list.
The thrill of learning something new and amazing is now being more often replaced by acknowledging a growing ‘permanent limitation’ list.
One antidote to the discouragement that threatens to invade my space is to set some goals. The hard work of understanding my healing process needs to be gradually replaced with getting on with life.
Three years and counting, living with ABI, certain activities no longer need to be planned in detail. The transition from pre-ABI has been worked out for many common activities.
One example of a living with a new routine is making a trip of more than an hour. My wife and I no longer need to plan where or how often we need to make a pit stop. We don’t need to discuss who will drive which stretch of the trip. We know the drill.
No longer having to carefully plan each significant activity in detail with possible ‘off ramps’ depending on my level of endurance makes it easier to engage in a greater number of activities.
Initially my memory and ability to problem solve were two significant factors that created its own complications. The two abilities that were most in demand in helping me adjust to a new reality were also unfortunately most compromised by the injury. This invariably creates a ‘catch 22’ situation.
The “Don’t Do” List
Recently I was asked if there are any activities I don’t do any more. I found it hard to answer the question. I can give a long list of activities I do in a modified way or carry out within a narrower scope. In fact, most activities end up on my ‘modified list. Exceptions show up in the physical domain. Activities that are mainly physical in nature requiring minimal to moderate cognitive engagement generally go well. That’s assuming there isn’t an unexpected setback.
So, what don’t I do any more?
1. No more parades. Too loud and too hectic.
2. No live concerts
3. I don’t ride a 36″ unicycle any more. Oh, but I still ride a 26″ unicycle so that belongs on the modified list.
So, the “Don’t Do” list of activities is rather short. Thankfully. The list of modified activities is rather long. Thankfully I can still do them even if it’s of a ‘part-time’ nature.
It’s the ‘part-time’ nature of so many activities that is bittersweet. Each of those activities is a not so subtle reminder of loss. The activities have not faded into the distant past.
And Now One Year Later
It was a year ago that I drafted the above observations. As I reread it I recognize some encouraging changes. For one, I attended a live concert a few months ago. While it’s no longer on my ‘Don’t Do’ list, it definitely requires some careful modifications, particularly if I want to take in the full experience.
In general my modified activities have shown improvement. My endurance for most activities have increased. Some of the improvement is a result of being better at anticipating the demands of the activity, taking breaks at more opportune times. It also helps that my resilience has improved for some activities.
I am still hoping to one day cruise around town on my 36″ unicycle. Wishful thinking? Maybe. But for now it’s parked in the garage, ready for when I’m ready.