At Christmas time we pull names before getting together with extended family. The intent it to have each person buy a gift for one person. To make the occasion a bit more special, the ‘giver’ will include a personalized poem with the gift. While the ‘poem’ might not meet a minimal literary standard, it is much appreciated by the person receiving the gift.
I received a gift with a poem that left me feeling much appreciated. At the same time, it left me quite upset. I was surprised by my ambivalent response. It was like being torn, like being two different people.
The poem and the gift acknowledged my ABI (acquired brain injury) status. The injury puts me in the broader category of functioning as a neurologically atypical person. That in itself was nothing new.
I have been blogging for two years about the challenges of living with ABI and acknowledging my neuro-diverse (ND) status. However, when someone else puts it in writing, something in me changes.
So what changed? When I shared my experiences that match those of a neurologically atypical person, it’s like I only half believed it. The reason I only half believed it is because often as I go through a day or two and maybe even a week I might feel like my old self. I find myself functioning in a manner that does not remind me of my ABI. It’s kind of like being in denial.
When someone else mentions my neurological atypical functioning I hear something different. It challenges my denial. I makes it seem much more real. It makes my current status as ND seem inescapable. That’s the part that made the poem and gift upsetting.
What is heartwarming is that despite my ABI I am accepted and loved. Despite my limitations I am not forgotten or overlooked. The poem reminded me that I am in important part of my extended family.
The support, encouragement and understanding that I receive from within my family helps me look beyond the limitations I experience living with ABI.
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.
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.
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?
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.
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.
One could try to summarize the Sea to Sea ride as a simple routine of ‘Eat, Sleep, Bike’ though not necessarily in that order or at the same time. One couldn’t be more mistaken.
It has become very clear to me that life in the bicycle lane has a daily routine that is designed with a similar template. However, it’s the content that goes into each day that is as varied or rather more varied than I would sometime like it to be.
Reading My Gauge
I have learned to read my overall well-being according to how well I am able to carry out the numerous early morning routines. Once I have gone through the routines of breaking camp, getting breakfast, making lunch, doing the personal details of sunscreen and having the bike ready to roll, I measure my well-being based on how many details I missed.
I’ve decided that a score of ten is tops. For every item I forget I lose one point. If I score less than 6 I know I need to make focusing on the ride a priority. That means, minimal conversation while riding, focus on riding steady, and focus on the traffic from behind. A score of 1 or 2 probably means I shouldn’t ride that day.
A difficult visit
Earlier this week I had the opportunity to visit a friend and former colleague that took me back to my teaching time in Alberta. As the tour approached Picture Butte I made inquiries and was able to have a wonderful and meaningful visit.
My friend had a stroke a few months ago and so I knew that with my lack of sensory filters that the visit would take it’s toll on me. It was a short and focused visit. During our visit we had some tearful moments, but for the most part I was able to hold it together. We both understood from experience the difficulty of dealing with loss.
We laughed about things that I didn’t realize she remembered from when I worked with her. She thanked me for visiting. It would have been harder to ride by without stopping to visit. It really was my honour to visit her.
Once I left the building, the full impact of the visit hit me. I was in tears. I was unable to talk. It felt good to be riding, but the tears kept coming. As I turned the corner to get back onto the route I heard someone call my name. I saw a crowd of riders getting treats, and in that crowd was my riding buddy.
I had prepped my riding buddy about the visit and so she wasn’t surprised by my condition. I walked past the group of riders to a quiet spot a couple store fronts further away. My riding buddy came over and sat with me. She explained to some others who didn’t know why I was upset that I had just had a difficult visit and needed some quiet time. Our tour chaplain while respecting my need for a quiet space came over and prayed for me.
In the next two hours as I rode I once more gradually became aware of the southern Alberta scenery around me. My riding buddy was able to give me a balance of time alone and offer occasional diversions. Over the next 50 kilometers I was gradually feeling more at peace.
The next morning I knew I was still dealing with some significant emotional sensory loading of the previous day. The shorter ride mapped out for the day was a bonus.
Not thirty kilometers into the ride a passing truck driver intended to give a friendly honk. What came out was an ill-timed blast of the horn just as the truck was beside me. While my riding buddy noticeably jumped in her saddle, I was overwhelmed by the blast. I was instantly into sensory overload. I was in tears off and on for the next hour. The blast set my recovery back a half day.
The emotional sensory loading from the previous day was still at a high and sensitive level. The emotions reside in the Temporal lobe of the brain which is near the ears. The assault on the ears will suddenly put a person back into a recent emotional event. It’s like suddenly and unexpectedly being dropped right back into the event.
Despite this additional setback, when it comes to ‘cost / benefit’ I had no regret making the visit the day before. I was fine dealing with the setback and letting the rhythm of the ride gradually bring me into a better space. The routine of looking ahead, checking my rear view mirror for traffic and scanning the countryside was helping to dissipate the acuteness of the sensory loading.
The need to be aware
Not fifty kilometer further the healing affect of the cycling abruptly ended. I noticed an oncoming transport truck suddenly swerve towards me. The driver having noticed too late some debris in his lane. As he focused on straightening out his rig, I noticed the second trailer was out of control and swaying wildly as it moved towards our lane.
My riding recalls me saying, “What’s going on.” Then, “Whoa!!!”
I was trying to get her attention because she was about 3 or 4 car lengths closer to the impending disaster. I was concerned about her not having enough time to get out of the way.
My riding buddy was concerned about me. From her position she saw she was out of the trajectory of the second trailer. She pictured me being right in the path if the swaying trailer.
The driver was able to regain full control. We tried not to think about the further complication had a car been coming up behind us.
It took me about ten minutes to recover from the immediate effect of the close call. I decided I would carry on. Can’t change was had just happened. I reasoned that should a third incident happen that day I would call for SAG support and call it a day.
Coming into camp
As we approached the end of the 150 km ride my riding buddy was ware that I was still struggling with the sensory loading of the previous day, compounded by the two incidents this day.
As we rolled into camp she immediately summoned help. She had one person take the bike off my hands. She sent someone else for my tent and sleeping bag. She herself got my recovery drink ready and made sure that I lay down and begin the recovery protocol. Slept for almost two hours before supper time.
After a good night of rest, the next day was a great ride. It was a long day with 165 km to cover. Thankful for a shorter ride the day before, and ready for a long ride that day.
Why do what’s hard?
I am beginning to understand people who are able to be passionate and enjoy an activity despite dealing with suffering and difficult experiences in the process.
It’s not that I would go out of my way to do something that causes pain. So why continue with one major set back each week of the first three weeks. Somehow, with this group of riders, the greater the need, the great sense of community that one experiences.
Also, this ride which I hoped would help my rehabilitation is giving me new insight into living with ABI (acquired brain injury). This new insight is based on my own ‘detective’ work and then reinforced by a scientific analysis of the different responses my riding buddy observes. (She told me that I was providing her with a very interesting case study.)
The harder the learning, the more exciting the outcomes. It is definitely rewarding.
It’s been two weeks of the tour and last weekend Jane left the tour to visit a friend in Edmonton. While she had signed on as kitchen help, which everyone has benefited from, the more significant part is that she has been here to see me through the first two weeks of the ride.
What a blessing it has been sharing these two weeks with her. She’s helped to keep me on track when the ride became too challenging. She’s made sure I had things ready and organized on the mornings when I wasn’t in the space to pull things together. She made sure I got supper when I overslept my 2 hour post-ride recovery nap.
Jane is leaving the tour knowing that there are other riders who are looking out for me. Several riders have offered their help. All I need to do is ask. It would do me well to ask Andrew or Stuart to make sure I don’t over sleep in the afternoon and miss supper. It would do me well to not be hesitant to ask for help with other needs, because failure to do that would come at my expense.
It’s become very clear to me, when I see the offers of support that I’m not alone in wanting to have a successful ride. Fellow riders are determined to help me have a successful ride.
In looking back, I realize I would not have managed much past the third day of the ride if it wasn’t for the support I have received from a number of people. I am still dumbfounded to end up with a riding buddy who is not only a brain injury specialist but had been assigned as a member of my Service Team. As members of a Service Team we have devotion and sharing time with 6 or 7 people (depending on which week of the tour one looks at the list.) There is only one word for that, providence.
With Jane taking a break from the tour I know I will continue to receive the support I need. And for Jane it is reassuring to know I have caring and supportive people around me.
Helpers, helping the helpers raise awareness for a cause that aims to help people to End The Cycle of Poverty.
This is a thank you blog that marks my second anniversary of living with ABI. I say thank you because the readers who have been reading my blog entries over the past year have been a strong source of support and encouragement.
It has been two years of trying to adjust to living with ABI. It has been two years of learning to compensate for my limitations. At times I will reread comments readers have posted in response to my thoughts. Some of the comments provide words of hope. Some comments are words of thanks for sharing my experiences. Other comments are simply letting me know I have not been forgotten.
In reading the comments I’m being reminded of the help I’ve been able to give others, including caregivers of those with brain injuries. Some readers have found some additional insight into living with brain injury, an injury which is difficult for neuro-typical people to grasp. I find it heartening when people make an effort to increase their understanding. Whenever I’m asked questions about ABI I give it my best effort to bring some insight to the topic.
When it comes to writing my healing has been noticeable. When I first started sharing a year ago I was able to compose a blog once every two weeks. After a few months I was able to share on a weekly basis.
Last fall I decided to expand the diversity of what I was experiencing. For me it was a way of confirming that my world was gradually opening up. My dear readers’ responses to that has brought a new kind of encouragement.
On the second anniversary of my ABI let me give a heartfelt thank you for the warm reader support. I’m happy to report that I have just completed another ‘first’ since my ABI. Each time I complete another ‘first’ marks another step in my recovery. The most recent ‘first’ being a plane flight with all its pre-boarding and customs procedures, allowed me to be plunked down on a Caribbean island for a week.
My bucket list includes cycling across the continent. I hope to make this a reality in the summer of 2017 by signing on to Sea to Sea 2017. However, I am still learning to live with ABI (acquired brain injury). For those who have followed my recent journey, I’ve had to learn a lot about what I can reasonably take on. Still figuring out my limitations has made me question whether a 10 week bike tour across the continent is achievable or even advisable.
Ever since the summer of 2013 I had my heart set on cycling across the continent. That summer I cycled from Lake Michigan to Montreal, a distance of 1400 km. I completed 250 km of the distance by unicycle. The balance of the 1400 km were completed on two wheels. The sheer enjoyment and success of the two week trip made me dream of one day biking across the continent.
On a good day I have been dropping hints with my family of my dream. On not so good days the thought of committing to this event has me downright scared. And so I vacillated from day to day, from week to week.
You could say I started my training last spring. I could not bike five kilometers without getting side effects of my ABI. By reducing my pace to about half of my pre-ABI pace I could manage five kilometers. Soon I was edging my distance up by five more kilometers, then ten more kilometers. On a very good day I could manage twenty kilometers. A couple months back I completed several forty kilometer trips. Still a far cry from the 130 kilometers I would need to do to take on the Sea to Sea tour.
During the heat of the summer I limited my cycling to late afternoons and cloudy days. With more than forty days that exceeded 30 C (85F) there were many days I stayed off the bike.
It’s almost like going back to ‘training wheels’. Through careful planning and training advice from my ‘brain coach’ I should be able to participate.
The things that encourage me to go will hopefully win out. The tour provides SAG support so I will not be left stranded if I have a bad day. It being a supported tour I will not have to carry my own gear. My experience with the previous tour is one of support and encouragement.
Cycling is one of the ways I cope with my ABI symptoms. I bike to help to help reduce my sensory overload or reduce fatigue brought on by stress and cognitive demands. I trust that I will continue to increase my biking distance. It’s not a race so I need to find a comfortable cycling pace.
In thinking back on my two week tour of 2013, cycling is one way to live a simplified life. Each day consists of some variation of ‘eat, sleep, bike’. The occasional extras would include pitching in with some of the group tasks.
Aside from getting to the starting point of the tour, Vancouver, there are other concerns while on the tour. Will I be able to handle the heat? According to the Farmers Almanac the temperatures should be more moderate next summer. Will I be able to handle touring with a large group, large gatherings for breakfast and supper and the daily peleton meetings?
I signed on to Sea to Sea 2017 this week. I have 7 months in which to see improvement in learning to live with ABI. I need to accept the real possibility that there might be days in which it will be best to not cycle. That will be the biggest challenge – convincing myself to stay off the bike if I’m not up to it for a day.
One part of my decision is clear. I will not do any part of the 2017 tour by unicycle. Unlike the summer of 2013, for the tour in 2017 I have no intention of doing part of it by unicycle. Living with ABI means I will have enough challenges to respond to and manage that I don’t need to create any artificial challenges. I will welcome the support I received in 2013, but this time for very different reasons.