The Paradox of Being Alone

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Wilderness cabin

So often I prefer to be alone but I don’t want to feel left out. This conundrum is one of the challenges of living with ABI (Acquire Brain Injury), though probably not limited to those who live with ABI.

Living with ABI can become a very isolating way to live. By that I mean, saying no, or passing on opportunities to participate in activities with others when I realize my sensory loading is reaching a point where I add to it at my peril.

The Paradox is real

When I engage in prolonged physical activities, such as cycling for a three to five hour block I  know I am committing to a recovery routine that I should not ignore. That means that as much I want to join in I will have to forego activities immediately following my vigorous activity.

When I am engaged in a discussion with a half dozen people I know my internal timer is counting down. As I am busy listening, reading body language, assessing people’s tone of voice, formulating responses to what I’m hearing, finding a socially appropriate way to interject, my neural fatigue is rapidly building. Even if I find the discussion very engaging at a certain point the internal timer runs out. I want to stay with the discussion but at the same time I want a quiet place to regroup.

When I’m at a music concert it’s does my heart good to take in the music, the lyrics and the energy of the venue. The music can be totally captivating, bringing back wonderful memories or create a memorable new experience. At the same time I know that at some point, maybe 30 or 45 minutes, and sometimes much sooner I will reach a tipping point. The captivating music will suddenly become a memorable failure, a start of a slow recovery in which I crave solitude while missing the company of family and friends.

When I am volunteering at the nature center close to home I need to remain self aware. I had only worked for about three hours but was totally exhausted. Being introduced to the project on my arrival was neurologically challenging because of my lack of mental flexibility. Sizing up the project for the day, coordinating with two other people, and doing something unfamiliar all contributed significantly to my sensory loading. While I enjoyed doing the project and wanted to see it completed, after three hours I was longing to get out of there and find a quiet place.

Planning Ahead

This week I have the opportunity to address a room full of teachers. I have offered to  share my own experiences of living with ABI, living as a neurologically atypical person in order to advocate for neurologically diverse students hoping that more teachers will develop a sensitivity for their needs.

The paradox of wanting my own space yet feeling compelled to share is staring me in the face. I am not sure how to prepare, to avoid sensory overload while doing an hour and a half presentation in a room full of people.

I know I need to ensure that my sensory loading is at a low level at the start of the presentation. That means I need to watch what types of activities I choose to do in the two days leading up to the presentation. Taking in an extra bike ride or two would be helpful. Engaging in socially or cognitively demanding activities of any kind needs to be kept to a minimum.

I know I need to ensure that my sensory loading is at a low level. I hope that booking a motel and arriving a day ahead of time will give me time to shed the sensory loading of driving in a car. Or maybe I should take the extra day to cycle the 160 km to the event.

Presenting

In order to manage my sensory loading while addressing a room full of teachers I need to be mindful of the structure of the presentation. While I would normally consider it conducive to allow for questions during the presentation, I am aware of the extra demands that will place on me. With my problem solving skills being severely compromised, fielding questions would be counter productive.

In order to manage my sensory loading it’s important to manage my level of stress and anxiety. Most people experience a measure of anxiety when addressing a room full of professionals, or non-professionals for that matter. I have conscripted a co-presenter who is scheduled to do part of the presentation. In addition to giving me a break when she presents she will be available to back fill what I am not able to complete.

Summary

The paradox of being alone colours much of what I do. At the same time I make a point of pushing forward, setting goals so that I don’t end up feeling that I’m living in isolation.

To resolve the paradox of being alone, my aim is to avoid isolation, by seeking solitude. Finding activities and finding places that refresh my being, that helps me manage my neural fatigue, that is my idea of a place of solitude.

When I am able to experience a measure of solitude on a regular basis, that gives me the energy and endurance to reach out, to share and not slip into a place of isolation. It’s not an easy balance to achieve. It requires increased self awareness, an understanding of my limitations and setting worthy goals for how I want to participate in my community.

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Common Sense doesn’t always make sense

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A Toy Box in the Making

Many hands make light work. If everyone could take a few minutes and pitch in, the work will be done in no time. We’ve all benefited from this type of sensible advice.

That’s not just practical advice, it also builds a sense of camaraderie. That all rings true unless you are dealing with ABI (Acquired Brain Injury).  Since my ABI the opportunity to work with someone else will usually add more demands to my day. At time it seems easier to be a recluse.

Working on something alone makes it less likely that I’ll develop neural fatigue. Help is great. However, working with a helper means there are a variety of social and practical considerations that need to be managed.

Pre-ABI

When is comes to completing smaller jobs I have always appreciated the opportunity to work with one or two other people. At times it’s the best way to get through a mundane task. Even making it enjoyable.

Assessing offers of help

Now a days, when I receive an offer of help, to simply lend a hand I’m inclined to decline the offer. It’s not that the offer of help makes me feel less capable. It’s just that things quickly get complicated. If on the other hand the offer of help is an offer of taking on the job, I am quite likely to accept it. I’ve learned to delegate things that I can’t complete in a timely manner.

In the last while I’ve had offers of help. An offer to help me pitch my tent – I declined. An offer to help me install a coat rake (for which it seemed I needed three hands) – I declined. Too proud? – no. Too complicated to coordinate.

Often I lose more than I gain by accepting an offer of help. Simply put, I will be more exhausted if someone helps me than if I do it by myself.

When I work alone it is cognitively less demanding; I don’t need to explain how I want to do it. I don’t need to coordinate my efforts with someone else. I don’t need to observe and explain changes in the execution of the job.

When I work alone it is socially less demanding. I don’t need to pay attention to tone or body language. I don’t need to assess how much to explain. Explaining too little can be just as annoying as explaining too much. I don’t have to match my pace to that of my helper.

Working with a helper brings into play a level of multi-tasking. What would have been a simple job, now becomes cognitively more demanding and socially more complicated. This invariably leaves me more exhausted.

Other’s experiences

Others with ABI have a similar take when working with a helper. For some there are other considerations.

My friend tells me he needs to work alone so that he doesn’t make mistakes. This he finds particularly important when he is baking. Even though he has done the same recipe countless times, whenever he tries to bake with a helper he will miss a step. One can appreciate that with baking a misstep will more likely spell a disaster rather than invent a new recipe.

Making it work

That doesn’t always rule out doing things with someone else. Often enough there are tasks that involve a simple routine. When I was sorting and cleaning our crop of garlic, my four year old grandson was glad to help. He had his part in the process. At the same time, it was relatively easy to monitor how he was doing and make the necessary corrections if he got it wrong.

This is just one more area of my life in which I am learning to be mindful. Rather than just accepting or out of hand rejecting an offer of help, I need to pause and weigh the benefits over the extra demands it will put on me.

Helping others

Having shared the challenges of receiving help, there is a different dynamic when I offer someone else some help. In many ways this can be easier. Knowing my own limitations I will first ask for an overview of what needs to be done and how the job is to proceed. I will then explain what accommodations I might need. If the job involves processing too many instructions I need to find a way to simplify it. If the job requires some concerted focus, I will suggest the need for some regular breaks or a change in activity after focusing for 20 to 40 minutes.

The benefit of being monitored

What I have appreciated the most when helping someone is having them check in with me. Several of my friends are aware of my limitations at a higher level of understanding. They will check in with  me and seem to know when to ask me how I’m doing. That helps me with my mindfulness, since it’s so easy to get caught up in an activity and just focus on getting it done.

The nuances of living in community while living with ABI has a way of bringing out the best in some people. I have had people give me a heads up when something is about to happen that will negatively affect me. Experiences like these reinforces for me a sense that I’m not alone in adjusting to life with ABI.

IKEA and ABI: a Confusing Combo

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IKEA cupboard with bookshelf

My recent experience made me realize I have not bought anything at IKEA since the pre-ABI era. In the past I was able to assemble an IKEA purchase in record time. Not only could I assemble the computer desk or end table or cupboard quickly, I also didn’t have any pieces left over.

My recent IKEA purchase left me wondering whether from now on I should avoid that store.

I won’t bore you with the details but I ended up assembling every page of the instructions twice. No matter how carefully I would line up the parts with the IKEA hieroglyphics booklet I would somehow get it wrong.

A few years back the instructions included the step of gluing all parts that are held together by dowels. While it makes the furniture more durable, I now know why they no longer include that step.

After I assembled each section, I would take a break before going on to the next step. After getting back at it I would eventually line up the right pieces and the necessary hardware only to find out that the part I had completed was put together wrong.

I would back up one step, hoping the glue would let go, reassemble that part and move on to the next step. I didn’t think it was possible, but sadly putting things together backwards and reassembling happened all the way through the process.

I did manage to put the doors and handles on the right way the first time. That’s because it would take a total idiot to install them wrong. There is no upside or downside to confuse.

Once I was done assembling the cupboard with the upper bookshelf I had more than a few pieces left over. I puzzled over the left overs for awhile. After studying the hieroglyphic booklet I recognized several parts from assembling the cupboard.

I worked my way through the hieroglyphics booklet and emerged with a fully intact second cupboard. Sadly I once again ended up reassembling each section twice before I had it right.

Sleuthing expedition

I stopped in at IKEA to find out I had completely mixed up my purchase. I prefer to blame the IKEA showroom for the mix up.

The showroom had the cupboard displayed as a single purchase with a price tag of $129. Nearby was the same cupboard with the bookshelf attached. The price tag of $149 was attached to the bookshelf part of the display.

Since I wanted the book shelf and the cupboard I made note of the order number for each. I went down to the self-serve area and confidently loaded up the boxes.

You’ve probably figured out my oversight. I couldn’t see how there could be only a $20 difference between the cupboard by itself and the cupboard with a bookshelf as a complete unit.

Notes to my ABI self

  • Do not shop alone at IKEA.
    • Reminds me of the paint store that wouldn’t tint paint for a husband unless his wife was along or he had a note from his wife approving of the colour.
  • Ask the cashier what I am actually purchasing.
    • That’s assuming the cashier actually knows what’s in the plain beige coloured boxes.
  • Price in the cost of hiring a furniture assembler.
    • That’s assuming someone else understand the booklet written in hieroglyphics better than me.
  • Return the extra furniture and tell them I changed my mind once I saw it assembled.
    • I was told they would be friendlier with me if I had the receipt but even with it assembled they would take it back.
  • It’s not worth driving an hour to return the extra cupboard.
    • Find a local person looking for a bargain
  • Don’t shop at IKEA on the weekend.
    • Unless you want to be one of the customers lined up 15 deep in each of the 20 checkout lines.

Anyone looking for an IKEA cupboard pre-assembled and ready to be enjoyed? Just think. You won’t have to waste time in the checkout line. You won’t have to waste time driving into the big city. You won’t have to waste time assembling the dresser. That makes it worth double or triple the purchase price.

What I ended up with.

Being AWOL

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Snowbirds – Niagara-on-the-Lake

When guests are arriving or soon to arrive that’s when most households go into an “all hands on deck” mode. There never seems to be enough time, despite attempts at planning ahead, to get everything done.

That’s when I am the least helpful. I do most poorly when there are last minute jobs that need to get done. The lack of mental flexibility is one of my ABI challenges. That means dealing with a few simple requests quickly leads to neural fatigue.

Neural fatigue sets in because the brain is called on to change the trajectory it was on. Putting a halt to what I was doing and all the thought processes that are part of the activity takes neural energy. The so called wrapping my brain around the new activity is like having my brain activity level decelerate and accelerate, using up precious energy.

It’s not a question of the tasks being complicated. No. To do even a simple task puts the brain through several steps. First, the request needs to be acknowledged. If the request isn’t fully grasped then a question needs to be formulated to get clarification. Once the clarification is received it needs to be interpreted. If it is properly understood then a plan, even for very simple tasks, needs to be worked out. To execute the plan the ‘where’, ‘what’ and the ‘how’ of the request needs to be worked out.

All the steps that a brain goes through when changing gears and taking on a new task happens seamlessly with most people. Most people don’t even notice it till they find themselves in a situation where they say, “Oh, this multi-tasking makes me tired.”

With an ABI the brain lacks the strength or endurance to change gears easily or seamlessly.

Limbic System

Why does the brain experience neural fatigue after only a few simple requests?

The nature of my limitations lies in the fact that my limbic system has been injured and so the neo-cortex is working extra hard to fill in.

For me the limbic system, which should be adept at rapidly changing activities, isn’t able to perform it’s normal functions. To give a simplified explanation, the limbic system has the following key functions:

The structures of the limbic system are involved in motivation, emotion, learning, and memory.   https://en.wikipedia.org/wiki/Limbic_system

Following up on requests to complete small tasks might not appear difficult at first glance. However, a different picture emerges when one realizes that the small task requires the following functions; motivation, learning, and memory, functions which the limbic system is designed to handle very efficiently.

When these functions are handed over to the neo-cortex, the brain function loses significant efficiency. When the neo-cortex takes on these functions it requires much more effort and the processing speed is much slower.

Analogy

Compare the change in brain function to a weight lifter being called on to stand in for a sprinter. A champion weight lifter will be struggling. Just as each athlete has a specialty so too each part of the brain has a specialty.

Just as an athlete can cross train and develop additional specialties so too can the brain. However, it takes time, effort and practice to take on new functions. Also, there needs to be a propensity for the activity. The ability for the brain to relearn is referred to as neuroplasticity.

Social settings

Many things happen during social settings, that my brain can’t process efficiently.  The social setting could be a dance, a birthday celebration, a wedding anniversary etc.. After several conversations I will find a quiet place to give my brain a rest. When there is a change in the activity I need time to adjust. When there’s live music I need to walk away more often. Most often ten minutes is enough to make a difference. On returning I will do a cursory overview and decide if I’m ready to join in.

This does break the continuity of the event for me. Often that is a minor inconvenience. Other times there is a sense of having missed something. Trying to get up to speed can contribute to neural fatigue. In those situations it’s helpful when someone fills me in on what happened while I stepped out. Though I don’t count on someone to fill me in.

I don’t always realize the source of the disconnect that is nagging at me and therefore not realize the need to ask someone to fill me in while I stepped away.

In the past year I have met several people who are very observant. These people know and recognize when I’m reaching my limits often before I’m aware of it myself. That brings with it a strong emotional sense of Wow! To have others looking out for me is heartwarming and in some ways beyond words.

When I’m around people who understand my limitations I don’t feel like I’m going AWOL. I have the assurance that I’m unofficially on an approved leave.

Post cycling reflections

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Portugal Cove, NL

This past summer I was on the road for 70 days. Starting on June 26 I was riding six days on, one day off. The 60 days of cycling gradually created a rhythm of it’s own.

The organized part

Initially the challenge of meeting the tour schedule, packing camp in the morning, getting breakfast, making lunch and gathering snacks for on the road was too challenging. It was the first time in over two years that I was on a rigorous schedule. Not only was I on a tight schedule but each step was critical for me to be prepared and equipped to ride for the day.

Eventually I more or less mastered daily hurdle of the rigorous morning routine. I was glad that getting accustomed to new routines was not impossible despite having difficulty with adjusting to new situations.

After the organized tour

Once I had completed the nine weeks with the organized tour I continued to cycle through one more province with two other cyclists. I wanted to include all ten provinces in my summer of 2017 ride. (I’ll have to do something about the missing three territories. But that’s for another day.)

Completing the supported tour and cycling with only two other riders made things much easier for me. I hadn’t realized how much my sensory loading was impacted each day simply by having 80 or so other people around me in camp and on the road.

The extra week of cycling Newfoundland had a negligible affect on my sensory loading. Riding with two other cyclists and having two support people meant there were fewer surprises and disruptions to my day. A more predictable day meant I needed minimal time to recover. This gave me more energy during the last part of each day.

The exception to experiencing reduced sensory loading was when we spent a day being shown around St. John’s. By mid afternoon I realized I needed to temper my activity level. By late afternoon I knew I needed to bow out. Pushing myself to a point were I would need a day or more to recover was not a good way to begin my trip back home.

Amazingly, my 16 hour ferry crossing of the Gulf of St. Lawrence went very well. That was despite having the ferry being battered by waves up to 10 meters high during most of the crossing. I experienced no noticeable sensory loading from that trip. In fact I slept quite soundly for most of the crossing.

Coming home

I had managed a summer long routine of being on a schedule and I had gradually fared better as the summer progressed. I was looking forward to a more relaxed schedule that comes with being at home.

With a more relaxed schedule of being at home I would be better able to manage my sensory loading. I didn’t need to push forward each morning to get cycling.

Unfortunately, a relaxed schedule after getting home didn’t happen. Very soon I was having to monitor myself more closely than I expected. I had hoped that my tolerance for sensory loading would improved over the summer.

Once I got home, I had left behind the simple life of cycling. I had left behind the simple life of doing one focused activity each day. All the routines that made up each day had one single purpose, support the bike riding.

Once I got home life became much more complex. I’m back home. That means there are bills to look after, there’s the yard work, there’s family to visit and more. Some things had been put off for the summer. Being home brought with it the full range of responsibilities.

One noticeable challenge I was once again reminded of is driving and riding in a car. A whole summer in which I probably covered less than 100 km in a car, while cycling over 7000 km. Once again I need to be mindful of the fatigue and nausea that come with riding in a car.

While my physical endurance has improved over the summer, I will continue to monitor the various activities that add significantly to my sensory loading. What I am grateful for is realizing that I can take somewhat of a holiday from having to manage my sensory loading. It’s not a holiday from work, but nevertheless, a necessary holiday that I need from time to time.

With the family gone to a music festival in town, I will head over there shortly on my own. I will cycle down there. I will like need to leave after about a half hour. I will enjoy the bit of time my brain can endure. I will value the memory of being there albeit only for a short time. When I’ve reached my limit I’ll cycle the 25 km back home.

Embracing Neurodiversity

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The Dunes Studio Gallery and Café – P.E.I.

Recently I had a situation which was causing me difficulty. The actions of another person was contributing significantly to my sensory loading. In addition to that, the person’s actions were inconsiderate and was out of sync with the expectations of the activity.

 

Because of my struggle with sensory loading related to my ABI (acquired brain injury), I had one of two options. The first option was to avoid being around the person. The second option was to make the person aware of the issue and appeal to some common courtesy.

I opted for the first choice. Just steer clear. It seemed the easier option.

I soon realized that it was impossible to avoid someone that was regularly around me. So my only viable option was to approach the person with my concern.

I approached the person with my request, not knowing what response to anticipate. That in itself added noticeably to my sensory loading.

The response I got was over the top and put me into sensory overload. Rather than acknowledging the friendly reminder, and recognizing that my request was very reasonable, I received some incredible push back. I was told that my request was ridiculous and that the courtesy was definitely unnecessary.

I walked away after the verbal assault and found a quiet place to off load some of the initial effects of my sensory loading. Since the ABI also affects my ability to problem solve, I was unable to give an immediate and measured response.

A half hour later the person approached me and apologized for, as he called it, his brusque behaviour. He told me he didn’t understand what I was talking about.  There was nothing ambiguous about my request. I had explained which of his actions were causing difficulty for me as well as reducing my margin of safety. His initial reaction was poorly covered by his nonsense explanation. With that I lost a lot of respect for the person.

Unfortunately, the interchange did very little to make his behaviour more considerate. For me it was a wasted effort and contributed unnecessarily to my sensory loading in the days that followed.

Avoiding to hide behind the ABI wall

I don’t like to use my ABI limitations to coerce someone else into changing their behaviour. If someone is engaged an activity in a socially acceptable way, even if it adds to my sensory loading, I won’t request any concessions. If someone is not acting in a socially acceptable manner I will ask the person to make concessions depending on how much it affects my ABI limitations.

However, I won’t explain my limitations as the basis for the request. I shouldn’t have to make my limitations public in order to receive cooperation. I don’t want to use my ABI as a means for coercion or manipulation. Being one’s own advocate is difficult and makes it hard to manage my sensory loading.

On a daily basis I have people around me engaged in activities in a socially acceptable manner. When these activities affect my ABI limitations I make it my business to leave the area or make my own accommodations.

Inclusiveness

My example shows some of the challenges of moving to a more inclusive neurodiverse society. The needs for those like myself who are neurologically a-typical the requests for consideration has a significant affect on our participation in a variety of events and activities.

At times when self-advocacy hasn’t worked I have had a measure of success with someone advocate for me. Unfortunately when self-advocacy hasn’t work other measures have too often been equally futile.

Much work needs to be done to move people to become more accepting of and have a greater understanding of neurodiversity. Through increased awareness hopefully more people will develop an appreciation for the needs of those who push the boundaries of neurodiversity. Pushing the boundaries not to make a point, but simply pushing the boundaries because of our presence and being who we are.

* What is neurodiversity?

The Pitfall of Success Stories

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Each person carries their own load.

When one is living with ABI (Acquired Brain Injury) success stories shared by others can be more trouble than they are worth.

Some recent discussions reinforced for me that publishing success stories is akin to walking a tightrope. Sharing one’s success in conquering certain limitations are definitely something to celebrate. Explaining how one experiences the incremental improvements can be helpful to others. However, to claim that one is ‘cured’ of an ABI is a tough claim to believe.

To claim to have been cured is to claim one has moved from being neurologically atypical to being neurologically typical. If that does in fact happen, I would definitely join in the celebration.

When a person makes generalizations about their success story, to apply to others, I begin to cringe. What works for one person and the process of achieving that success cannot be assumed as a template for anyone else carrying the ABI label.

Lesson one

Let me explain. I began to work with an OT (occupational therapist) a year after my ABI. My OT is a very experienced therapist focusing strictly on MVA (motor vehicle accident) brain injuries. The first thing she told me is that no two injuries are the same. In working with me there is no template to work from. With each client she is starting from scratch.

The OT sessions which were weekly at first and later monthly focused on two things:

  1. The OT as the detective, finding out what factors in my life needed to be modified,
  2. The OT as the teacher, training me to become my own detective.

I had to learn to identify what what type of activities were causing me setbacks, or more to the point, what factors in my activities were creating sensory overload (also called flooding).

As the months progressed I learned how to adjust my expectations, the intensity and duration of my activities, the choice of environments, and other factors in order to have a successful day.

Avoiding sensory overload became one of my measures of success. (The quality of my interaction with others, the purpose of my activities was another measure.) I did not relish needing up to four days to recover from an activity that brought on sensory overload.

One of a Kind

Every brain injury is unique because no two people experience injury to the same extent or in the same area or areas of their brain. The direction of the force, the person’s body position, the amount of muscle tension at the time of impact are just some of the contributing factors determining the severity and extent of the brain injury.

The brain is a very complex system of the body. While neuroplasticity, the brain’s ability to heal itself or to compensate, can show amazing results there are limitations to what healing can take place.

No two impacts to the brain are the same. Think of a batter hitting a ball. One mighty swing and the ball goes dead in the infield. Another mighty swing connects with the sweet spot and the ball sails out of the ballpark.

Other factors that affect healing is the level of motivation that a person has, not to mention the life goals a person has their heart set on. In some cases the part of the brain that is injured directly affects a person’s ability to be motivated.

Life stage

Another factor that affects a person’s rate of recovery is what responsibility they are able to shed. In my situation I have no children at home, no work demands, a caring community and a supportive extended family. I have no restrictions on my personal schedule or regular obligations to meet.

I choose to share my set backs and successes so others might learn from my experience. Sometimes my experiences help a caregiver better understand the person they are supporting. Other times I hear from others and gain a better understanding of myself.

Assumptions

What I find least helpful is when people make assumptions about which challenges I am dealing with.

“Oh, bright lights must bother you.” (Actually no.)

“You must be dealing with headaches regularly.” (No, that’s very rare.)

The stereo-type impressions that people have are unhelpful and often annoying.

It’s not a matter of defining different environments and putting them into neat little packages – this one works – this one doesn’t work.

Nuances

Living with ABI has it’s nuances. That’s why it takes detective work to learn to live with it. Let me share a few examples.

I have been in a room with a crowd of people noisily chatting over supper. Within five minutes I need to walk out because I’m going into sensory overload. Another time I will be in a room with a crowd of people and will be fine. The difference can be as subtle as the height of the ceiling in the two different rooms.

My ability to listen to live music is very much limited. In enclosed spaces my limit might be 5 minutes. In an outdoor venue I can manage for up to an hour and sometimes longer. On the other hand, I can happily listen to recorded music all day.

Listen and ask

What I appreciate most when someone has an inkling that I am living with ABI is their willingness to ask questions and listen. That signals to me that the person is willing to learn, wants to gain a better understanding, and has taken a personal interest in my well-being. That is the building blocks for developing a supportive bond.

Love to hear your success story. Great to hear about your personal insights. Tell it with the respect that each of us have our own life to live.