Moving Beyond Denial

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A cherished gift from my niece

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.

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Express Route

 

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Northumberland County Road 9

 

Express Route *

Traveling express ways and county roads,

anticipating greetings at the host family.

Renewing family ties, sharing tales.

Embracing to convey wishes for 2017.

 

Oh the warmth of reunions.

Sharing gifts with poems.

Surprises for the young ones.

Treats and hugs. Who can resist?

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Traveling during flu season,

providing an express route.

Unannounced bridging the vital gap.

Invisible bugs embracing new hosts.

 

Oh the joys of family and friends,

sharing more than intended.

Full days, short night, reduced resistance,

creating mixed memories for 2017.

 

*  To all who have enjoyed my poems, may you experience health and blessings in 2017, bringing hope and joy to all…

Christmas struggle, Easter Joy

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Bethlehem walk – Coldsprings

I was sitting in the back of the church sanctuary, a place that has become familiar. The longer I listened to the seasonal lyrics the greater the contrasts of two realities came into focus. The disconnect was real. It was strange to find myself in tears as the congregants were singing in wonderful harmony.

Silent night, Holy night…

The lyrics made associations with the celebratory nature of Christmas. At that moment the ‘merry’ part of Christmas was not within my reach. As the carol singing continued, I was wandering in a confused and disrupted mental landscape.

The neural loading during the first part of the worship service had been gradual and subtle. The ‘greeting’ part of the liturgy was two long minutes of chaos; handshakes all around and brief introductions. I had joined in the responsive reading that followed till I lost focus.

The meaning of the words got lost navigating my compromised neural network. My network lacked the necessary efficiency to comprehend the full message. My mind wandered a few lines into the reading.

All is calm, all is bright...

Each element of the liturgy gradually and subtly moved me away from a calm and focused worship. This, along with the pains which resurfaced with my recent struggles added to the nagging discomfort whether I sit, stand or walk. As my body pendulated between headache and fatigue a sense of calm eluded me.

Away in a manger no crib for…

The disrupted sleep added to both the fatigue and headaches. While in recovery mode any available energy is redirected to the essential areas. The brain is an opportunist that co-opts whatever energy happens to presents itself and claims it for the most essential job of mending the compromised neural network.

… no crying he makes…

These discomforts added to my emotional vulnerability, and left me out of tune with the spirit of the music. Tears filled my eyes much too easily.

As I lost focus I retreated into myself. I questioned the authenticity of the line from the lyrics that echoed in my brain. I choose to believe that like any other baby, that the Christ baby cried, probably even screamed. It’s definitely more reassuring to consider he cried. He would have cried for all the world to hear when he was hungry because his mother’s milk was slow to come in. He would have cried when the swaddling clothes were soiled and Mary hadn’t noticed it because the manure from the animals would have distracted her.

Hark the herald angels sing, “Glory to the …

At one point I once again joined in the singing.

While I have always enjoyed singing, (though choir participation never was my forte,) lately music moves me more deeply. Singing and live music has a vibrancy that can’t be missed. It touches me deeper than almost any  other art form, the words, the melody, the reverberations of tones and overtones. While my sensory loading reached it’s manageable limit there was a comfort that came with the emotions that emerged.

… to all he brings, risen with healing in his …

Deep down I know that Christmas is a message of hope. Hope for those who don’t find it anywhere else. The promise of healing reaches deeper than the merry greetings of Christmas. That’s what helped me close the gap between the lyrics and the space I found myself in.

Once in royal David’s city … he feels for all our sadness …

The lyrics affirmed me. It gave me a sense of hope, a reason to celebrate.

Praise the Lord, … and forget not all his benefits… and heals all my diseases … crowns me with love and compassion… Ps 103 in the Communion liturgy

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My grandson thought it was fitting to wrap Christmas presents with a cross on it

My grandson held my hand as we joined the procession to the communion table. Observing Christ’s death as a preparation for marking the birth of Christ?

Communion actually brings the Christmas message into focus. After all, isn’t his birth the quiet but official marking of “Let His Suffering Begin.” His suffering with a definite purpose.

With a short but pronounced slurp my grandson cleared the last drops of grape juice from the individual communion shot glass.

This makes Easter joy a reality, makes it real. It reaffirmed that the birth of Christ was to accept his invitation of healing, of bringing wholeness and restoration to my life.

Joy to the world the Lord has come ...
... No more let sin and sorrow grow
 nor thorns infest the ground; 
he comes to make his blessings flow
 far as the curse if found ...

Even while I struggle I look forward to marking Christmas as a time of laughter, a celebration with family, friends and community. Not with the same spontaneity or exuberance but nevertheless with a sense of Joy that comes when celebrating with people who can be authentic with each other; sharing tears, sharing joy, sharing hopes for tomorrow.

Let me wish you dear reader – Joyeux Noel.

Antisocial Hiking

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Therapeutic Hiking isn’t Meant to be Social.

When my neural fatigue level is near its max, hiking is not a social activity. Even if I do the hike with an other person, it is mainly a therapeutic exercise. It takes effort. It requires focus. And I need to be mindful.

Background

Last weekend, the suggestion to go for a hike did not thrill me. The activities of the first part of the weekend had put my neural fatigue at about 90%. While one part of me was hoping for a no answer, the other part of me knew that the repetitive physical activity and being outdoors would be therapeutic.

I should mention that the neural fatigue I experienced that day did not come as a surprise. I had been looking forward to having a couple visitors over night. The second day our house was the location for a Canadian Thanksgiving dinner for eighteen members of our extended family. Early into the second day my body gave me signals that I would have to limit my time being around that many people. I had hoped that two naps earlier in the day would help, but the signals persisted. To avoid the negative consequences of ignoring the signals my body was giving me, I felt compelled to miss the dinner. To participate in a structured activity within a confined space was clearly a recipe for trouble. I did not want a repeat of several previous experiences.

The hike

20161014_172031I agreed to the hike as my past experience has shown that repetitive physical activity has a way of relieving neural fatigue. Doing the repetitive physical activity in the outdoors with the brilliant colours of the maples and sumac in contrast to the conifers would be an uplifting experience.

The start of the hike was the hardest. What motivated me was anticipating the benefits at some point. Doing the hike requires neural activity. The neural fatigue meant my coordination was noticeably lacking, my balance was unpredictable despite the fairly even terrain, and my gait was irregular. My left arm was picking up the cadence of my walk fairly early in the hike. My right arm took much longer to get into the swing of it. My lack of coordination meant I had to be mindful of the occasional rough spots in the trail. All of this affected my starting pace which was about 3 km/hr.

When the hike is meant as a therapeutic activity, I’m not great company. If I feel compelled to carry on a conversation that would be adding to my neural fatigue, making the hike counter-productive or possibly even having to abort the hike. Even so, the first part of the hike increased my neural fatigue.

Towards the end of the hike I had been able to increase my pace to 8 km/hr. This was a clear indication that I had reduced my level of fatigue. The increase in my pace was not a straight line increase. Some early attempts to increase my pace took too much effort and so I found my self slowing down. Needless to say, my irregular pace doesn’t make me a very sociable hiking buddy.

I refuse to be apologetic about the apparent antisocial behaviour which I might exhibit while hiking. To be apologetic about that is as counter-productive as apologizing for being short, or apologizing for not being able to run while your leg is in a cast.  A commitment to change is what is inherent for an apology to be sincere. So it doesn’t make sense to apologize for things one can’t change.

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Ganaraska Forest

While some of my behaviour can be considered antisocial when my neural fatigue is high, I will make an effort to acknowledge other hikers as I meet them but I would fare better on trails where there are few hikers.

Exercising on a treadmill doesn’t have nearly the benefits or appeal of a hike. A treadmill provides the repetitive physical exercise but it is a monotonous repetition. Every step is identical and predictable. Also, the scenery doesn’t change when one walks on a treadmill. With a treadmill there is also the disadvantage of being locked indoors.

The one hour hike gave me the energy to be active for a few extra hours. That makes the hike a doubly rewarding activity.

Pondering the source of my anti-social hiking

All actions require brain activity, whether the actions be a reflex action or a carefully calculated action. All brain activity is done by use of neural pathways that communicate with different parts of the brain before sending messages that are translated into actions by way of our nervous system. The actions can be speaking, walking, waving etc. The neural pathways in the brain can be compared to the maze of streets in a major city.

With my acquired brain injury neural pathways in different parts of my brain were damaged (micro tears in different areas of the brain) making it impossible for brain signals to pass through certain areas. Just like a city with roads that are damaged and being repaired. The damaged roads create detours which lead to traffic jams where there previously hadn’t been any.

I am gradually gaining muscle tone. (Brain injury had a dramatic impact on that.) I have increased my physical endurance from biking five kilometers at a time last spring to fifty kilometers at a time recently. While my endurance for a fairly repetitive physical activity is improving, it is much harder to develop endurance for activities that require more demanding brain activity.

Being in a social setting is neurologically much more complicated than biking. In a social setting there are a host of sub-activities happening: listening, decoding sounds, interpreting tone, making eye contact, focusing, reading body language, reading other people’s body language, tracking the conversation, deciding what to respond to, formulating a response, finding an appropriate segway, remembering, etc. All these different sub-activities has the brain communicating with several different parts of the brain along a complex network of neural connectors.

With ABI the complexities of a social setting and the heavy neural activity is like a city with many detours. It makes all the different sub-activities much more demanding brain activity. Think of it as crisscrossing a city while regularly encountering detours without a map to redirect you.

When I’m in a social setting, no one can see my neural activity working double overtime.  The congestion in my neural pathways quietly takes it’s toll. Neural fatigue subtly and sometimes not so subtly begins to set in.

If I ignore the fatigue because I want to be part of the action, the fatigue continues to build. Sometimes the fatigue builds unnoticed. Then once I’m away from the momentum of the social setting the fatigue can feel like hitting a wall. The longer I stay in the social setting the greater the level of neural fatigue builds, the longer it take to recuperate.

Over time I hope the neural ‘detours’ start to clear up. According to Norman Doidge, (The Brain’s Way of Healing) the brain had an amazing ability to heal itself. Part of the healing comes through intentional training.

Weight training produces incremental gains. One can’t expect to lift 300 pounds after one week of training. Early on, after experiencing ABI I was unaware of various social miscues that would happen. As I have time to heal, I experience incremental improvements in my ability to participate in social settings. I am able to participate for longer periods of time. I am able to gradually take in more complex social settings. A key factor is the level of neural fatigue I have before stepping into a social setting.

Setbacks help me heal

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Imagine the potential setbacks

Recently Jane and I chose to attend a wedding for a niece. Accepting the invitation meant making a five hour trip, arranging for overnight accommodation,  and attending the wedding ceremony. I knew I would have to monitor how much I could participate in the ceremony and celebrations.

Since attending this wedding involved a lengthy drive we decided to make it a short holiday rather than a quick drive up and back. This seemed reasonable on the face of it, as we had recently completed a successful three week holiday involving some long distances.

In hindsight I realized that having made one successful trip does not preclude that the next trip will be successful. All trips are not created equal. The success of the first trip gave me a laissez faire attitude about the need for careful planning for this much shorter trip.

The success of the major trip lay in the extensive details of the planning. (You can read about it At Risk of Over Planning) Most notable was the flexibility of most aspects. Arrival dates and times were flexible. They were easy to change without serious penalty or disruption. Sites to visit were not pre-booked. The trip involved just the two of us. Social interaction with anyone else was either optional or incidental.

Looking back on the recent wedding trip, it most notably lacked flexibility. The trip was structured around a schedule. Secondly, the ceremony obviously was in a venue determined by someone else. Thirdly, attending involved extensive social interactions. Weddings have expectations. For the sake of the bridal couple you want everything to go well, including guests blending in and having a positive and memorable time.

Tale of Two Trips

(If you are looking for a quick read, jump to the ‘Lessons Learned’ near the bottom.)

This ended up being a tale of two trips. Other than both being called trips, in all other aspect they were different. The contrasts were most notable in the outcomes. The first one included episodes of only minimal sensory overload. The second trip was an experience of ongoing sensory loading. The planning for the second trip was rather neglected. Like the behaviour of a neglected child the outcome should not have been a surprise.

We did not get the car properly packed the night before. That meant doing some last minute packing. To compound the matter, some last minute tasks needed attending on the final morning.

I ended up starting the trip with some unnecessary sensory loading. Making a rushed mental inventory, hoping we hadn’t left anything important behind should have been completed the night before.

The change in the means of travel from a pickup to a car ended up being rather significant. The car was harder to pack and organize than the pickup truck. The handy labelled tote boxes didn’t fit in the car. Therefore things were harder to find when needed.

Trying to remember where things were packed added to the cognitive sensory loading. Making successive attempts to locate things compounded the matter.

Having  upgraded our accommodations from a tent to a cabin, we thought it would be enjoyable to share it with another couple we have traveled with in the past. While this turned out to be a pleasant experience, it did not give me the necessary psychological space.

The additional social interactions adds to the sensory loading as does the need to adjust to new routines. Retreating to a tent or cabin would normally be an opportunity to alleviate some of my sensory loading.

With a wedding, someone else chooses the venue and plans the celebration format. The banquet hall meant engaging in polite conversations, having background music and listening to stories and presentations.

The music, the crowd of people talking, the presentations were all sounds that would reverberate off the walls. Even with musician ear plugs, the sensory loading hit me full force within 20 minutes. By the end of the first course I was fading. Fortunately Jane noticed. Being distracted by the busyness of the event, I had failed to be mindful about checking in with myself. Taking a 15 minute walk reduced my sensory loading enough to get me through the dinner part of the event.

The next morning we hosted a brunch for the extended family. As ten o’clock approached about 20 people descended on the picnic area outside our cabin. As we started the brunch I soon realized I was approaching sensory overload. I took my plate and walked away.

It was too early in the day to handle the busyness. Engaging in conversation was out of the question. I was mindful of the fact that I had shed very little of the sensory loading from the wedding celebrations of the previous night.

The brunch lasted about an hour. By then the deadline for vacating the cabin loomed large. We had already requested an extension so this was like an eviction ultimatum. I struggled to help move things out of the cabin and get things packed with some semblance of order.

It was not even noon and I was already close to my sensory loading limit. The cognitive demands of interpreting instructions related to clearing out the cabin and packing the car was pushing me close to sensory overload.

When we left the campground we had about a ninety minute drive ahead of us. We had made plans to visit at my brother’s cottage for a few days. I knew I was better off not doing the driving. Since the drive was relatively short I thought it was quite easily manageable. All seemed to go well. We had made one short stop. That left us with about a hour to go. The last part of the drive was eight kilometers of gravel roads with various sharp turns and steep hills. About two kilometers before we reached our destination I was fully into sensory overload. At that point I had lost the ability to think clearly enough to suggest pulling off to the side of the road. Continuing in this way for the last two kilometers compounded the effects of the sensory loading.

Travelling the gravel road, combined with the acceleration and braking to navigate the hills and turns put me into vestibular sensory overload. Adding that on top of an already high sensory loading, I was not able to speak coherently, never mind trying to come up with any logical suggestions like ‘stop the car.’

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DisAbility rail chair from boat to cottage

We went ahead with the plan to stay at the cottage for four days. I came to realize over the period of four days that my sensory loading was not being alleviated. Being a guest in someone else place is not the same as camping with the two of us. Routines are unfamiliar, you want to be accommodating to the host. The cottage was accessible only by boat. The ride across added to my sensory loading, once again putting me over the top.

The challenge in getting across the lake added to the vestibular sensory loading which unfortunately topped up my sensory loading. The boat ride was a new experience since my ABI. Had I known how quickly it put me past my limit, this visit to the cottage would have been vetoed in the planning stage. Being in familiar space with familiar routines is a key part of alleviating sensory loading.

Lessons learned

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Ready to capitulate to the demands of the Bay of Fundy

The trip had put me through a ten day stretch of living on the edge of sensory overload. Ten days on the edge did not occur without inadvertently dropping over the edge multiple times. When my environment pushes me beyond my ability to absorb and process the sensory input my ability to function operates on a very narrow bandwidth. What often compounds the issue of sensory overload is the inability to recognize how to exit from the situation.

I have developed strategies for exiting places and situations that I know could cause sensory overload. When I know a particular place or type of event will put me at risk of sensory overload I will plan an exit strategy ahead of time. It’s the new or unfamiliar situations that present the real challenges.

Dropping over the edge of sensory overload means I have lost my ability to take control of my situation. There is a helplessness. The helplessness comes from not knowing how to exit from the situation. When I reach my sensory limit, my ability to reason, think logically, or problem solve is seriously compromised. I also lose my ability to speak coherently so it’s hard to let someone know I need help or how to help.

Our next trip will be a one week stay with my son and daughter in law. I need to heed the following parameters:

  1. Keep each day flexible. Leave room to alter plans in response to my status.
  2. Keep socially demanding situations brief
  3. Keep a regular sleep schedule
  4. Allow time and space to alleviate sensory loading; brisk walking or cycling
  5. Attempt new activities in small doses
  6. Eat regularly, meals and snacks
  7. Take a break every hour when traveling

Lessons learned; the better the planning, the better the experience. Healing doesn’t just happen. It seems like I need to be an active participant in my healing journey.

 

 

Two Key Ingredients for Resilience.

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The Emigrant – Halifax Harbour

I am gradually realizing that one of the areas of ongoing challenge related to my ABI is the struggle to manage sensory loading in situations that elicit strong emotions. The emotions invariably deal with loss of ability, loss of life, loss or breakdown of relationships, or loss of opportunities.

The emotional loading that comes from experiencing loss is not limited to people I know.  The sense of loss frequently extends to reading or hearing about other people who have suffered significant loss, extreme hardship, death or hearing about people who have overcome serious setbacks through the kindness of others.

What I find interesting is that novels that recreate situations of loss have a minimal emotional impact on me. I absorb the experience as an academic exercise. Despite extensive and realistic character development the characters in novels remain fictitious.

Visiting the Canadian Maritimes

Recently I visited the Maritime museum in Halifax. Being a maritime museum there is no shortage of stories recounting shipwrecks – stories of real people who lost their lives in maritime disasters. The shipwrecks invariably left wives and children mourning which often left them in destitute circumstances. The stories were repeated in several places we visited; other locations in Halifax, in Lunenburg, in North Rustico. Visiting this part of Canada there is no shortage of communities willing to share a heartbreak story with visitors.

The Maritime Museum also housed the story and artifacts of the Halifax explosion. At the beginning of the twentieth century this was the largest man-made explosion to date. While the loss associated with shipwrecks is a calculated risk, the Halifax explosion was a result of a series of unfortunate errors between personnel on two ships in the harbour. One of the ships had a full load of ammunition. The human interest stories that form part of this tragic error are even more heart rending.

Another significant story of loss while visiting the Maritimes is the Acadian experience. We viewed a couple of sites with extensive displays and stories of the experience in Grand Pre, NS and in Miscouche, PEI. The Acadian experience was one of significant loss of life in the process of being expelled by the British, separation of family members, and the trauma of being uprooted from a peaceful way of life. The use of print, audio-visual presentations and life-sized models of the experience creates a vivid depiction of the events.

Pier 21

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CNR coach circa 1950

While I managed to pace myself when viewing these historical displays, there was one that proved to be most challenging. The most impressionable experience was our visit to Pier 21. In walking up to the museum of European emigration to Canada I braced myself to keep some emotional distance during the visit. This was the port where my parents landed in 1950. This coincidentally was 25 years to the day that Jane and I got married.

My first impression was the dull green CNR railroad coach orphaned on a section of track to the left of the museum entrance, identical to the one in which my parents travelled. I could picture my parents boarding this coach, newlywed less than a week, minimal command of the English language, less than a hundred dollars in their pocket, riding for two days through December countryside of Nova Scotia, New Brunswick, Quebec and Ontario, having said good-bye to friends and relatives with the realization they might never see them again. They had chosen Canada over Australia just weeks before emigrating because the next ship leaving for Australia was scheduled much later than they were willing to wait.

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Watching my parents riding the coach

I took a few minutes to compose myself before walking to the Pier 21 ticket booth. I realized I needed to keep some emotional distance if I hoped to complete a tour of the museum. On purchasing my admission pass, the first question almost unhinged me. I was asked whether I had any connection to Pier 21. When I mentioned that my parents had landed here in 1950 she welcomed me as a Pier 21 Alumnus as she placed a gold alumnus sticker on my shirt. How to keep a self-imposed emotional distance with that welcome? I was in tears. This put the experience front and centre. Being labelled as an alumnus meant I lost some of my anonymity.

I couldn’t escape the reality. Being an alumnus of Pier 21 has a direct bearing on many aspects of who I am. This place symbolized growing up in an immigrant household, many years of meager means, a bi-lingual upbringing, English technically being my second language, far from grandparents and a stranger to most of my 45 cousins.

Being a Pier 21 alumnus meant I was raised by parents who had big dreams, who had the 20160706_170239will and perseverance to pursue those dreams. Growing up I gradually began to understand that the immigrant ethnic group in which I was raised was not a demographic cross section of those who stayed behind in the ‘old country’. I was raised by parents who made this bold move, much of it for the prospects and wellbeing of their children not yet born.

Taking the guided tour of the building we were shown where my parents and many other emigrants took their first step in this foreign country, the room with wooden benches where they waited for their immigration interview, and had their papers scrutinized before their Canadian status was pronounced legal.

Completing the tour was emotionally tought. Each phase of the tour was a reminder of the magnitude of the decision my parents had made. In the 1950’s emigrating was considered a final goodbye, a goodbye to parents and all other family members.

Accepting Loss

Having experienced unexpected loss following my acquired brain injury, I’ve come to realize how stories of loss are inevitable. I can’t avoid stories of loss. These are stories of real people whether its museum displays, personal stories retold, radio documentaries aired or biographies published. Most of them stories of loss more significant than mine; refugees displaced, indigenous rights violated, corporate interests trouncing traditional ways of life, flood victims displaced, health care denied and the list goes on.

Loss is a significant part of life. It has also highlighted for me that we don’t control our destiny. We have dreams. We make plans. We pursue our goals. How often have I failed to plan with the humble caveat, DV (Deo Volente) “God willing.” There’s something healthy about bringing a level of humility, to downplay the arrogance of planning.

I have begun to accept the reality of experiencing emotions more deeply. In one sense I welcome it. It compels me reflect more deeply on the twists and turns people experience in their life journey. In turn I hope this deepens my sense of empathy as I see challenges unfold around me.

Loss as a partner of Hope

Experiencing loss is a reminder of how small we are. Many of the stories of loss show the flip side of the story, stories of communities rallying, communities unwilling to give up, communities that continue to have hope. This trip was once again an opportunity to take in the stories that gives a particular region or village their identity. In hearing the stories of loss and heart break one can’t help but notice the resilience and fortitude in the telling.

How can stories be shared if hope is absent?

An Amazing Choice!

Bracebridge water wheel
Disabled but not Destroyed

As principal for 11 years at a small Christian school I had the opportunity to bring in a student named Marshall. I had been given periodic glimpses of his life, elementary school and high school. Marshall has cerebral palsy and therefore has very limited mobility and is unable to use his voice. The school I was in did not have the facilities or the financial resources to accommodate Marshal’s needs when he was old enough to enter kindergarten. As a school we could not offer him the opportunities, gifts that he was able to develop elsewhere.

In November 2012 I made arrangements to bring Marshall in to speak with the students. On this particular Monday morning, Marshall shared a captivating message of hope.

Here is an excerpt of what I shared with the school community in the newsletter that was distributed later that same day…

Students … were mesmerized by a presentation given by a student who lives with cerebral palsy. Marshall shared not his disability, but rather his abilities. Despite living with the physically debilitating effects of cerebral palsy Marshal was able to give students a glimpse of his life.

Students had an opportunity to see what life is like when one has challenges moving around. They learned about situations that happen around town when one is not able to speak.

Through conversation with Marshall the students came to a profound appreciation of not only his challenges but also his incredible abilities and determination. Students watched a couple of superbly designed and executed videos that Marshall had developed giving others glimpses of his life. Students were dumbfounded to hear from him that it takes about a month to create a video.

Marshall is able to compose by using a device that scans the alphabet. He selects one letter at a time with a control that he manipulates by moving his head. Students experienced the time consuming nature of using this device during the question and answer time. Students would ask a question and then wait as Marshall formulated an answer one letter at time. The speech synthesizer would then read the response.

At the time I was struck by the quiet patience with which the students waited during the long pauses, at times for two minutes, as Marshall composed his responses.

Students learned that one day Marshall asked is parents to no longer pray for him to be healed from his cerebral palsy. He believed that if he was healed from cerebral palsy he would no longer be the same person. He believes that God created him as he is. He believes that in his cerebral palsy God has a purpose for him.

To quote from last week’s editorial written in anticipation of Marshall’s visit: “… so that God’s power might be seen at work in him.” John 9:3b

There was no doubt in anyone’s mind, as the presentation unfolded and as Marshall shared with the students that God’s power clearly is seen at work in him.

I continue to struggle with ABi and the changes that has meant for me. I still identify more closely and prefer the ways in which my pre-life enabled me to contribute to my community and allow me to realize my own goals and aspirations. Given a choice I would go back to my pre-life.

Here was Marshall, living with a diagnosis that put many more constraints on him that I could ever imagine. Yet given the choice he did not want to live in a different body. Given a choice he wants to keep his “pre-life”. For Marshall, life with cerebral palsy is part of his identity. This is how God created him.

Despite regularly being reminded of my limitations I am able to move forward with hope:

“For I know the plans I have for you,” declares the Lord,

“plans to prosper you and not to harm you,

plans to give you hope and a future.” 

– Jeremiah 29:11