Shireen Anne Jeejeebhoy :
Marlene told me in her interview for Lifeliner about how Judy Taylor was unusual in her rapid adaptation to living without eating. She had been a vital woman, mother, and wife. In one week, she lost her bowels and could no longer eat. In ten months, she was sent home on total parenteral nutrition, an experimental and artificial form of feeding, the first in the world living at home on it, with strict instructions to not eat as in don’t chew and swallow.
She had to chew carrots for the sake of her teeth, but then she had to spit out the remnants, as she did with gravy and ice cream.
We’re a species dependent on food; not eating violates our biological and psychological imperatives.
But Judy went one step further: she cooked for her family, entertained, baked for her church – without ever eating any of it. The adjustment to baking but not enjoying, cooking but not eating, inhaling the fragrances of food without partaking, astounds.
People who live with chronic gastrointestinal illnesses, for whom food makes them ill, adjust to TPN easily because TPN means feeling better. It nourishes and gives them energy. But for Judy, TPN came with a dramatic downturn in her health, a radically altered life.
Yet she thrived.
Brain injury similarly alters life.
The COVID-19 pandemic with its (temporary) restrictions on our lifestyle rocked millions in the sudden changes it wrought.
Those disabled by it, it’s worse. It’s like having (a permanent?) brain injury.
One of the things that struck me about the general reaction to the pandemic is how it’s outed the space between healthy, working people and those who must live with chronic illness or debilitating brain injury.
The closest the public sees the effects of injury on a person is with elite athletes. But athletes receive immediate diagnostics, several effective treatments for their injuries and psyche, that are barely if at all revealed. We measure their short recovery times in days or weeks; long in a year. But reality for the rest of us differs markedly. Short is months or a year. Long is years or decades. Permanent is the norm.
The pandemic is probably the first time most have experienced a realistic timeframe for a health-care catastrophe. And they can’t cope.
Lack of coping shows up in COVID-19 fatigue that governments now treat. Brain injury fatigue is similar.
In the early days, you can’t believe you have a damaged brain. From what your health care team say, you believe that it’ll be over in months, a year tops. (Public health is as bad as individual health care in downplaying time and seriousness.) You tire of rehab.
You yearn for it to end. Judy, herself, confided to her Pastor about her anger at the unjust changes; she struggled for 12 years with her desire to eat; she wearied of the drip-drip of stomach acid out of her G-tube onto her skin. But outside of her Pastor’s office, she wreathed herself with laughter and worked to make others’ lives better, whether her children’s, her husband’s, or her church and TPN communities, She leaned on the unflagging support of her health care team, bible study group, and husband. Laughter and helping is how she adjusted.
Over Christmas 2013, an ice storm plunged Toronto into darkness. Ice froze homes as hydro crews struggled for days to restore power. The storm cancelled Christmas for thousands. Except for those who could adjust.
Those who see opportunity in disaster chattered excitedly about planning a unique Christmas.
They celebrated the idea of holding the festivities after December 25th, with renewed appreciation for family finally being able to gather together in a warm home.
They either cancelled or rescheduled their weekend plans to make way for Christmas. These families didn’t want anyone to be left out; they thought about how to ensure the best experience for all, not only of themselves.
By planning a big celebration in restored warmth and by advocating for those trapped in frozen apartments, they countered the shivering weariness of waiting for power to return while couch surfing.
Those who couldn’t adjust insisted weekend plans would proceed as if the ice storm hadn’t happened, that Christmas must happen on the 25th, even if some family couldn’t make it, the ones exhausted by the effort of keeping warm and fighting for power to return.
We cannot expect holidays to remain rigidly the same in pandemic years. Those of us with brain injury haven’t experienced a normal holiday in all the years with injury. Some retreat to their couch with a big bowl of popcorn away from the intolerance and noise of those who profess to “love” you but refuse to accommodate the injury’s effects. Some plaster on a smile, join the intolerant family, and take breaks in the bathroom.
The lucky have families who changed things up so they could enjoy celebrating as much as everyone else.
In pandemic times, we need to be like those who learn about brain injury and accommodate; we need to be like those who resisted resentment and weariness of a storm by plunging whole-heartedly into celebrating differently. Be like Judy. We can use the pandemic to toss out traditions no one likes anyway and adopt the NaNoWriMo philosophy of going wild with creativity. We can use the COVID-19 stay-home experience to think about how people with brain injury feel, to listen, believe, and design a holiday that embraces them into the warmth of togetherness. Even virtual togetherness.
Marlene told me in her interview for Lifeliner about how Judy Taylor was unusual in her rapid adaptation to living without eating. She had been a vital woman, mother, and wife. In one week, she lost her bowels and could no longer eat. In ten months, she was sent home on total parenteral nutrition, an experimental and artificial form of feeding, the first in the world living at home on it, with strict instructions to not eat as in don’t chew and swallow.
She had to chew carrots for the sake of her teeth, but then she had to spit out the remnants, as she did with gravy and ice cream.
We’re a species dependent on food; not eating violates our biological and psychological imperatives.
But Judy went one step further: she cooked for her family, entertained, baked for her church – without ever eating any of it. The adjustment to baking but not enjoying, cooking but not eating, inhaling the fragrances of food without partaking, astounds.
People who live with chronic gastrointestinal illnesses, for whom food makes them ill, adjust to TPN easily because TPN means feeling better. It nourishes and gives them energy. But for Judy, TPN came with a dramatic downturn in her health, a radically altered life.
Yet she thrived.
Brain injury similarly alters life.
The COVID-19 pandemic with its (temporary) restrictions on our lifestyle rocked millions in the sudden changes it wrought.
Those disabled by it, it’s worse. It’s like having (a permanent?) brain injury.
One of the things that struck me about the general reaction to the pandemic is how it’s outed the space between healthy, working people and those who must live with chronic illness or debilitating brain injury.
The closest the public sees the effects of injury on a person is with elite athletes. But athletes receive immediate diagnostics, several effective treatments for their injuries and psyche, that are barely if at all revealed. We measure their short recovery times in days or weeks; long in a year. But reality for the rest of us differs markedly. Short is months or a year. Long is years or decades. Permanent is the norm.
The pandemic is probably the first time most have experienced a realistic timeframe for a health-care catastrophe. And they can’t cope.
Lack of coping shows up in COVID-19 fatigue that governments now treat. Brain injury fatigue is similar.
In the early days, you can’t believe you have a damaged brain. From what your health care team say, you believe that it’ll be over in months, a year tops. (Public health is as bad as individual health care in downplaying time and seriousness.) You tire of rehab.
You yearn for it to end. Judy, herself, confided to her Pastor about her anger at the unjust changes; she struggled for 12 years with her desire to eat; she wearied of the drip-drip of stomach acid out of her G-tube onto her skin. But outside of her Pastor’s office, she wreathed herself with laughter and worked to make others’ lives better, whether her children’s, her husband’s, or her church and TPN communities, She leaned on the unflagging support of her health care team, bible study group, and husband. Laughter and helping is how she adjusted.
Over Christmas 2013, an ice storm plunged Toronto into darkness. Ice froze homes as hydro crews struggled for days to restore power. The storm cancelled Christmas for thousands. Except for those who could adjust.
Those who see opportunity in disaster chattered excitedly about planning a unique Christmas.
They celebrated the idea of holding the festivities after December 25th, with renewed appreciation for family finally being able to gather together in a warm home.
They either cancelled or rescheduled their weekend plans to make way for Christmas. These families didn’t want anyone to be left out; they thought about how to ensure the best experience for all, not only of themselves.
By planning a big celebration in restored warmth and by advocating for those trapped in frozen apartments, they countered the shivering weariness of waiting for power to return while couch surfing.
Those who couldn’t adjust insisted weekend plans would proceed as if the ice storm hadn’t happened, that Christmas must happen on the 25th, even if some family couldn’t make it, the ones exhausted by the effort of keeping warm and fighting for power to return.
We cannot expect holidays to remain rigidly the same in pandemic years. Those of us with brain injury haven’t experienced a normal holiday in all the years with injury. Some retreat to their couch with a big bowl of popcorn away from the intolerance and noise of those who profess to “love” you but refuse to accommodate the injury’s effects. Some plaster on a smile, join the intolerant family, and take breaks in the bathroom.
The lucky have families who changed things up so they could enjoy celebrating as much as everyone else.
In pandemic times, we need to be like those who learn about brain injury and accommodate; we need to be like those who resisted resentment and weariness of a storm by plunging whole-heartedly into celebrating differently. Be like Judy. We can use the pandemic to toss out traditions no one likes anyway and adopt the NaNoWriMo philosophy of going wild with creativity. We can use the COVID-19 stay-home experience to think about how people with brain injury feel, to listen, believe, and design a holiday that embraces them into the warmth of togetherness. Even virtual togetherness.
