8 days ago — Known as 'IHU', the B.1.640.2 variant has been reported by researchers at institute IHU Mediterranee Infection in at least 12 cases, and has ...
04-Jan-2022 — Known as 'IHU', the B.1.640.2 variant has been reported by researchers at institute IHU Mediterranee Infection in at least 12 cases, and has ...
8 days ago — Known as 'IHU', the B.1.640.2 variant has been reported by researchers at institute IHU Mediterranee Infection in at least 12 cases, and has ...
04-Jan-2022 — Known as 'IHU', the B.1.640.2 variant has been reported by researchers at institute IHU Mediterranee Infection in at least 12 cases, and has ...
16-Dec-2018 — At Sonapur, 20 km from Guwahati, Dr Dhani Ram Baruah sits in his ... two decades after being arrested for transplanting a pig heart to a ..
US doctors transplant full, live pig heart into human patient
In
this photo provided by the University of Maryland School of Medicine,
members of the surgical team show the pig heart for transplant into
patient David Bennett in Baltimore on Friday. (AP)
WASHINGTON:
Whether or not pigs have wings or pigs can fly, pigs can certainly save
human lives. In a landmark first-of-its kind surgery, doctors at the
University of Maryland School of Medicine outside Washington DC have
successfully transplanted a genetically modified pig heart into a
57-year-patient with terminal illness. The patient, Maryland resident David Bennett,
is doing well three days after the surgery, the university's medical
center said on Monday, as doctors who performed the operation revealed
the transplanted heart was working normally and creating the pulse and
pressure associated with the human heart. The surgery took place on
Friday and took about eight hours.
Video Player is loading.
Although
the patient is still connected to a heart-lung bypass machine which was
keeping him alive before the operation, doctors said the new heart is
doing most of the work and there are no signs of rejection as of now. He
is expected to be taken off the machine on Tuesday. "We are
proceeding cautiously, but we are also optimistic that this
first-in-the-world surgery will provide an important new option for
patients in the future," Dr Bartley P. Griffith, the lead surgeon in the breakthrough achievement said, while foreseeing a solution to organ shortage crisis in the long run. While
some pig organs and cells, notably its heart valve and skin, have been
used in humans before, this is the first time a full porcine heart has
been transplanted into a human. The pioneer in this field of
transplanting animal organs -- called xenotransplantation -- is
Pakistani-American Dr Mohammed Mohiuddin,
a graduate of Karachi's Dow Medical College, who with Dr Griffith set
up UMSOM's Cardiac Xenotransplantation Program and was part of the
surgery team. "This is the culmination of years of highly
complicated research to hone this technique in animals with survival
times that have reached beyond nine months. The FDA used our data and
data on the experimental pig to authorize the transplant in an end-stage
heart disease patient who had no other treatment options," Dr.
Mohiuddin said, adding that the successful procedure provided valuable
information to improve the potentially life-saving method in future
patients. Doctors had to go in for a porcine heart transplant rather
than a conventional one because Bennett's condition did not allow him
to qualify for a human transplant. He had been admitted to the hospital
more than six weeks earlier with life-threatening arrythmia and was
connected to a heart-lung bypass machine, called extracorporeal membrane
oxygenation (ECMO), to remain alive, the university said. In addition
to not qualifying to be on the transplant list, he was also deemed
ineligible for an artificial heart pump due to his arrhythmia. He
then consented to a porcine transplant even after being told of the
risks. “It was either die or do this transplant. I want to live. I know
it’s a shot in the dark, but it’s my last choice,” he said the day
before the surgery. According to Dr Griffith, when briefed about the
unprecedented nature of the procedure, Bennett joked, "Well, will I
oink?" Bennett won praise from doctors and administrators for his do
or die decision. "We appreciate the tremendous courage of this live
recipient, who has made an extraordinary decision to participate in this
groundbreaking procedure to not only potentially extend his own life,
but also for the future benefit of others," Dr Mohan Suntha, President and CEO of the University of Maryland Medical System said.
It
is time to remember Dr Dhaniram Baruah for doing the same was arrested.
Instead of accolades, Indian scientists are named and shamed. Dr Subhas
Mukhopadhyay who paid the price with his life was a pioneering example.
16-Dec-2018 — At Sonapur, 20 km from Guwahati, Dr Dhani Ram Baruah sits in his ... two decades after being arrested for transplanting a pig heart to a ...
===========================================
Pig heart transplant: Not many are buying the Assam doctor's story yet
Not many are buying the Assam doctor's story yet.
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RUBEN BANERJEE
Guwahati January 15, 1997
ISSUE DATE: January 15, 1997
UPDATED: April 16, 2013 11:54 IST
In
the sterile and sombre air of an intensive care unit, Purna Saikia
fights for life. A machine helps him breathe; tubes and pipes snake
around and into him. Nothing unusual except the failing heart inside
Saikia is a pig's.
Or so Dr Dhani Ram Baruah says. "Medical
science has taken a giant leap forward," exults Baruah, the head of the
Dhani Ram Baruah Heart Institute outside Guwahati. Few share Baruah's
excitement. Xenotransplantation, or animal-to-human transplant, has
never worked on the heart.
No one has yet figured out how to stop the
human body's immune system from waging a war against animal hearts, a
process called rejection.
While researchers explore the molecular
world for clues to stop the immune system, Baruah has a simple solution
literally. It's a secret solution of chemicals that blinds the immune
system, he says. Saikia's heart was treated with the magic solution for
30 minutes, washed and then implanted in a 15-hour operation, Baruah
explains.
So does a pig's heart beat in the dying Saikia? "It's a
hoax... cheap publicity," fumes Assam's Health Minister Dr Kamala
Kalita. "No pig's heart was implanted in the first place." Indeed Baruah
signed a statement saying he had done no transplant, but he alleges the
confession was forced from him. "They threatened to shut down my
hospital if I did not comply."
"If the present heart shows signs of failing I will have another pig heart implanted." Dr Dhani Ram Baruah
Unfortunately,
no one in the medical fraternity believes him either. "It sounds like
something out of a dream," laughs N.K. Mehra, head, department of
histocompatibility and immunogenetics, All India Institute of Medical
Sciences, New Delhi. If something fools the immune system, the diverse
triggering mechanisms somehow find a way around.
"I would be
very, very sceptical," says William Baldwin, a xenotransplantation
researcher at John Hopkins University in the US, where one of the
world's top teams hasn't got beyond getting pig's hearts into baboons.
And these are pigs genetically engineered to reduce rejection; Dr
Baruah's pigs are your ordinary porkers. Experiments on human beings
stopped after Baby Fae, a two-week-old baby in the US, died within three
weeks in 1984 after her heart was replaced with a baboon's heart.
Little
wonder then, that Dr Baruah is being termed the medical fraternity's
Ramar Pillai, the man who held a nation in thrall last year when he
claimed to make fuel from water. But Dr Baruah is no small-town hick.
He's a Fellow of the Royal College of Surgeons in the UK, and was joined
in the operation by Dr Jonathan Ho, a cardiac surgeon from the Prince
of Wales Hospital in Hong Kong.
Saikia in intensive care: the transplant has led to questions of medical ethics
But
INDIA TODAY has learned that Drs Baruah and Ho have achieved infamy in
the past. They implanted heart valves made of animal tissue - developed
by Dr Baruah in 12 patients in Hong Kong in 1992. A year later, six
patients died. The Asian Medical News reported that "grave concerns"
were expressed "over the procedure and ethics of the implementation".
Ethics
raise their inconvenient head again. The most pointed question about
xenotransplantation may not be whether it can be done but whether it
should be done. Deadly new viruses could spread to humans from animals,
much as AIDS moved from monkeys. "This is totally against the ethics of
medical science," says Mehra.
The good doctor is undaunted. "To
hell with controversies," he says angrily. "I will go ahead with what I
am supposed to do." Back in the intensive care ward, Saikia is in
critical condition. What if he dies? Baruah doesn't blink: "If his
present heart shows signs of failing, I will have another pig heart
implanted." Simple.
7 days ago — Scientist Dr. Peter Scott-Morgan is pushing the boundaries of what it means to be human. Dr. Peter Scott Morgan, scientist and cyborg. Channel 4.
New frontiers
After ALS struck, he became the world’s most advanced cyborg
Scientist Dr. Peter Scott-Morgan is pushing the boundaries of what it means to be human.
Dr.
Peter Scott-Morgan, a prominent British-American robotics scientist, is
almost completely paralyzed — save for his piercing blue-gray eyes,
which are constantly in motion, typing out text to be spoken by his
synthesized voice.
Scott-Morgan, who is 63, remains undaunted,
though. “Paralysis is an engineering problem,” he insists, and it’s one
he has a solution for: becoming a cyborg. “And when I say ‘cyborg,’ I
don’t just mean any old cyborg, you understand, but by far the most
advanced human cybernetic organism ever created in 13.8 billion years,”
he says.
In 2017, Scott-Morgan was diagnosed with amyotrophic lateral sclerosis (ALS),
also known as Lou Gehrig’s disease. His illness, called Motor Neurone
Disease (MND) in Britain, is the same degenerative disease that
afflicted physicist Stephen Hawking. Having spent equal periods of his
career living in England and America, he now resides in Torquay, a
seaside town in southwest England, with his husband Francis.
He’s been well-known in the U.K. since the 2020 release of a primetime Channel 4 documentary, Peter: The Human Cyborg, and his subsequent memoir, Peter 2.0. Here in the U.S., he is a more obscure figure.
ALS
affects the motor neurons in the brain and spinal cord that tell
muscles what to do. As ALS progresses, the degeneration of motor neurons
in the brain interferes with messages to muscles in the body.
Eventually, muscles atrophy, and people with ALS lose the ability to
move their arms, legs, and body. They become unable to talk, walk,
breathe, or swallow. Most die from respiratory failure within three to five years after symptoms first appear.
In
2017, doctors told Scott-Morgan that he had two years to live. So far,
it’s been four — and he has no intention of dying anytime soon. Dr.
Brian Dickie, director of research for the MND Association in the U.K.,
who is familiar with Scott-Morgan’s case, says the roboticist has what
those in the terminal-disease world call “incurable optimism.”
Scott-Morgan doesn’t believe in God; he believes that technology will save him. “All my early science education came from Dr. Who and Star Trek,” he says. “They taught me that if you’re smart enough, brave enough, and have access to technology, anything’s possible.”
At
this point, Scott-Morgan is almost completely “locked-in,” unable to
move except for his eyes and a few facial muscles. His sense of smell
and taste are gone, and he can’t breathe on his own, but his brilliant
mind is fully intact.
Scott-Morgan now relies on a synthetic version of his biological voice and has had his face scanned to produce a 3D animated avatar,
which he wears on a screen on his chest when speaking publicly. After a
series of operations to extend his life, including a total
laryngectomy, he uses technologies like GPT-2, OpenAI’s generative deep-learning model for text, pushing the boundaries of what it means to be human.
He’s done all this with a global consortium of technologists, designers, and physicians. The Rebels, he calls them. His Scott-Morgan Foundation
is collaborating with companies like Intel, CereProc, DXC, and Lenovo.
They are working alongside leading scientists, engineers, artists, and
technologists to provide hardware, software support, integration, and
AI. They’re all donating their time and resources in an effort to
pioneer better solutions for people living with extreme disabilities.
Exclusive video of Scott-Morgan speaking via his old and new avatarsPeter Scott-Morgan
The
Rebels are working on advancing the ability to customize expressive
digital voices, developing self-driving wheelchairs, and embedding smart
technology throughout Scott-Morgan’s home.
“With extraordinary
support from my husband, Francis, and countless kind and brilliant
collaborators, I find the once-dark future incredibly bright,” says
Scott-Morgan, whose ultimate goal is to control his synthetic voice,
avatar, word predictor, self-driving vehicle, and exoskeleton through a
single user interface. To do so, he plans to increasingly rely on AI.
“Cyborg
is just a fancy word for part-human, part-machine,” he says. “Contrary
to the torturous scare stories about how it feels to be trapped in your
own living corpse, the brain moves on. It grieves a bit, and then, if
you give it a chance, most of the time, it forgets. Days pass when I
never once remember that I could walk, move, or absurdly, even that I
could talk in the past.”
Scott-Morgan says he participated in the
recent documentary about him to get a message of “thriving” out there to
counter our culture’s defeatism around terminal illness. “Society just
expects people like me to statistically curl up and die on cue,” says
Scott-Morgan. “Instead,I intend to be a human guinea pig, to see just how far we can turn science fiction into reality.”
Locked-in
The
first time I hear from Scott-Morgan, in July, he emails me a 111-page
PowerPoint presentation for his foundation, which took him a month to
complete using only his eyes. “Some days, I could only design two slides
a day,” he writes.
One of Scott-Morgan’s slides describes a night
when he couldn’t communicate an excruciating pain from a cramp in his
foot. (Between 57 and 72 percent of patients with ALS report pain.)
Not
long after, I wake up with a cramp in my own foot. At first, I think
I’m having a nightmare, psychosomatically channeling Scott-Morgan’s
pain. I can’t conceptualize the feeling of being locked-in and
experiencing unmanageable suffering. For seconds, which feel like
minutes, I try to calm my mind. I can't think my way out of the cramp, a
fact that takes me a while to shake. If I couldn't manage the pain, how
does Scott-Morgan?
The following morning, I email Scott-Morgan
about my experience, worried about what it must be like for him. “To put
this in perspective, temporarily losing the ability to use a hi-tech
comms system — although potentially traumatic and painful — is
infinitely preferable to not having the system at all and suffering the
waking nightmare of being locked-in, trapped in impotent silence within
the straightjacket of your own living corpse,” he responds.
“Fortunately,
there is a well-established protocol for high tech,” he adds. He
suggests I talk to Lenovo’s chief technology officer, Thorsten Stremlau.
“There are rare moments where you see the real power and potential of technology, where the possibilities both seem endless and essential.”
Lenovo
is providing the intelligent hardware — smart cameras, eye-tracking
headsets, and high-performance computing infrastructure — needed to
realize Scott-Morgan's vision. “There are rare moments where you see the
real power and potential of technology, where the possibilities both
seem endless and essential,” says Stremlau when we connect via Zoom.
“Meeting Dr. Peter Scott-Morgan was one of those moments.”
One
of the earliest project teams Stremlau was part of at Lenovo aided
Stephen Hawking with the IT setup for his wheelchair and laptop.
Expanding on that work, Stremlau plans to use cameras and wearables to
detect distress or elevated vitals in Scott-Morgan; the tech will alert
his caretakers should he be unable to communicate because he’s not
wearing a headset.
“These problems we solve for Scott-Morgan will help us advance the work we’re doing for people facing disabilities,” Stremlau says. “Ensuring that Peter has a way to communicate when he’s locked-in drives my commitment.”
Triple-ostomy
As
a 16-year-old growing up in Wimbledon, England, Scott-Morgan wrote
essays about how in the future, his human brain would link with an
electronic brain, asserting that “together we will be far more
intelligent than the sum of our parts.”
In 1984, he published The Robotics Revolution,
a book about the future of robots, almost as if he knew he’d need a
manual. Building on a bachelor’s degree in computing science, and a
post-graduate diploma in AI, he earned a Ph.D. in robotics from the
Imperial College of Science, Technology, and Medicine — the first such
degree granted in England.
When
Scott-Morgan came out as gay in the 1970s, everyone in his family,
except his parents, disowned him. “The world told me, ‘You really don’t
fit,’” he says. When the Citizen Partnership Act was enacted in the U.K.
in 2005, Scott-Morgan and his partner, Francis, became the country’s
first legally recognized homosexual couple. After the law was revised in
2014, the two were the first to officially marry there.
The Scott-Morgans at their weddingPeter Scott-Morgan
In
2017, just after being diagnosed with ALS, Scott-Morgan realized he’d
need to act quickly to reengineer his body before becoming locked-in. He
envisioned three surgeries: a gastrostomy, colostomy, and a cystostomy,
which would insert tubes directly into his stomach, colon, and bladder,
respectively. A “triple-ostomy” he called it. The surgeries would allow
Scott-Morgan to take in more nutrients and avoid having to have a
full-time caretaker to assist him in going to the bathroom.
The
challenge was that no one with ALS had ever preemptively had all three
surgeries, let alone requested them. Determined, Scott-Morgan and his
husband met with the head of the ALS clinic at a major London teaching
hospital to describe his plan. However, as Scott-Morgan recounts in his
book, before he finished explaining his reasoning, the doctor
interrupted him: “I refuse to become involved in any of this!”
“But I want to be proactive in my overall clinical care,” said Scott-Morgan.
“ALS
follows no rules. You cannot be anything other than reactive,” said the
doctor. “Plus, if we did that for you, we’d have to do it for everyone
with ALS.”
Scott-Morgan processed this and sat in disbelief. Imaginerejecting individualized care, he thought. He fired the doctor and returned home to meet with his local National Health Service physicians doctors.
When
Scott-Morgan explained the “triple-ostomy” to Tracy Thomas, his local
ALS coordinator, she did not take well to the idea. “When I said I was
going to throw a huge amount of cutting-edge technology at my disease to
see how I can make being locked-in really exciting,” says Scott-Morgan,
“she let me know that it would be a newly frozen hell before any
surgeon on the planet would damage perfectly healthy organs.”
The
plan was radical, and to further complicate the situation, most doctors
are hesitant to operate on a patient with ALS because general
anesthesia can impede breathing. Also, some physicians worry that
surgery may trigger a more rapid progression of their disease.
Ultimately,
Thomas was won over by Scott-Morgan’s enthusiasm to extend his life and
organized a meeting with Dr. Maree Wright, a soft-spoken
anesthesiologist based in his hometown. “When I first heard about
Peter’s case, I thought, ‘Why would he want this really high-risk
surgery?’ But you know,” says Wright via Zoom, “there’s only one Peter.”
She lifts her hands and smiles. “He’s a trailblazer, and frankly, we
need people that rock the boat to make us think and reflect on why we do
things in a certain way.”
Wright was caught off guard by the
passion and candor with which Scott-Morgan expressed his desire to live.
It shook her views on how the medical profession approached the
treatment of his disease. If she could help him, the implications for
other ALS patients could be staggering.
However,
first, she had to develop an anesthesia plan, and there was hardly any
research data on how to anesthetize people with ALS. Her greatest
concern was that Scott-Morgan might not be able to come off a ventilator
after his operation. Hospital officials tried to talk Scott-Morgan out
of having his surgery at the eleventh hour, but he was resolute in his
decision to move forward.
Ultimately, Scott-Morgan’s team of
physicians and his local NHS hospital made the bold decision to support
his wishes and move forward with the landmark surgeries that would
extend his life. On July 10, 2018, the three surgeries were performed by
multiple surgeons over three hours and 40 minutes.
Everyone
involved was surprised to see Scott-Morgan discharged to the general
surgical ward after only a day in ICU and then sent home 15 days
post-op. Scott-Morgan proudly points out that a medical paper about the procedure was selected as the Oxford Medical Case Report of the year for 2019.
Version 2.0
Immediately
after his triple-ostomy, Scott-Morgan began planning his next surgery, a
full laryngectomy to stop the risk of choking on his own saliva or not
getting enough oxygen. It was another radical idea — one that would cost
Scott-Morgan his voice box but prolong his life indefinitely.
Wright,
Scott-Morgan’s anesthesiologist, helped him find the surgeon to do it:
Dr. Philip Reece, a top ear, nose, and throat surgeon also based locally
in Devon. Reece agreed with Wright that Scott-Morgan should be able to
live as full a life as possible.
Before the surgery happened,
Scott-Morgan set out to solve another problem — how to create a
synthetic voice that sounded like him. He reached out to a world
authority in speech technology research and development, Dr. Matthew
Aylett, the chief scientific officer of CereProc, a company that creates
text-to-speech solutions. Based in Edinburgh, Scotland, CereProc is the
company that rebuilt film critic Roger Ebert’s voice following his throat cancer surgery.
“Because of new translation technologies, I will be able to swear in any language.”
Using a neural text-to-speech system called CereWave AI,
Dr. Aylett created a digital voice that sounds very close to
Scott-Morgan’s natural voice. CereProc reproduces emotion by asking
speakers to read scripts in different ways — say in a calm or tense
tone.
“If
you lose your voice because of an illness like ALS, you want to sound
like you,” says Aylett. “Synthetic-voice technology is evolving daily.
From changes in algorithms to improvements in how we process and edit
voice itself, it is becoming quicker, easier, and more efficient to
create an artificial voice.”
As Scott-Morgan’s ALS progresses, he
won’t be unable to form facial expressions, so he wanted a 3D animated
avatar that could express emotions and be capable of speech. Aylett’s
team worked with Scott-Morgan to record more than 15 hours of audio and
more than 1,000 individual phrases to create the avatar.
On Oct. 9, 2019, Scott-Morgan tweeted what he said was his last post as “Peter 1.0.”
The
following day, he struggled to say his last words to his partner — “I
love you” — just before Reece performed the landmark preemptive
procedure, the first-ever elective laryngectomy on someone with ALS in
the U.K.
“Being
able to speak with what is recognizably my voice, has totally taken the
sting out of giving up my biological voice,” says Scott-Morgan.“Because
of new translation technologies, I will be able to swear in any
language,” he adds. “Shit! Merde! Scheisse!” His digital avatar can even
sing, as demonstrated in a recent live interview with broadcaster
Stephen Fry.
Scott-Morgan’s first-generation avatar couldn’t smile. His new AI-instructed avatar — created by Pinewood Studios, which digitally duplicated Carrie Fisher’s face for the latest Star Wars
movie — will show his emotions, allowing him to laugh, smile, wink, and
pull off his signature move: raising his right eyebrow. Currently, the
challenge is real-time synchronization — so voice, lips, and expressions
all work together to portray the same emotion — something we take for
granted as human beings.
“My smile will be the last thing to
disappear,” says Scott-Morgan. “I should have a new avatar just in time
before I can no longer smile. They promise it will be indistinguishable
from a real person, allowing me to convey emotion.”
AI system
Today
Scott-Morgan is limited to communicating letter by letter, word by
word, through a manual eye-tracking system. DXC is working with the
Scott-Morgan Foundation and partners to develop a new context-aware AI
system that will radically improve the verbal spontaneity of Peter 2.0.
The
next iteration of the software will include a system that will learn
from Peter’s previous interactions and offer him possible responses
appropriate to his situation. (Before being locked-in, Scott-Morgan had
laser eye surgery to give him perfect vision at 70 centimeters — the
distance from eyes to his computer screen.)
Esther Duran, design and innovation director at the Scott-Morgan Foundation, collaborated with Lama Nachman,
director of the Human & AI Systems Research Lab at Intel, to help
Scott-Morgan communicate. Previously, Nachman and her team developed
Intel’s Assistive Context-Aware Toolkit,
a software platform that helped Hawking communicate through keyboard
simulation, word prediction, and speech synthesis. They made it
open-source so that developers could build different capabilities on top
of it.
“I prefer to view the future through the lens of human–AI collaboration rather than human–AI competition.”
After
Hawking lost the use of his hands, he started using a cheek muscle to
communicate. Computers designed for him relied on running lists of
words. Whenever the cursor reached a word or phrase he wished to use,
Hawking twitched his cheek muscle to select it. The process was
painstakingly slow — about one word per minute.
Nachman explains
that extreme accuracy mattered to Hawking, so he wasn’t willing to give
up control. “Whereas, if you look at Peter, he wants to have a natural
interaction with people,” she says. “It’s not about wanting to sound
exactly like Peter 1.0 before his diagnosis. He’s trying to meld with
his AI to make Peter 2.0 the best combination of his personality and the
AI.
“While
much of the conversation around AI and humans positions the
relationship between the two as adversarial,” she continues, “I prefer
to view the future through the lens of human–AI collaboration rather
than human–AI competition.”
The future
The
next challenge the Rebels are tackling is motion, and they are
recreating every element of both the mental and mobile human experience.
DXC is helping to integrate Scott-Morgan’s AI to control his
specialized robotic wheelchair, a sophisticated device that can “boldly go where no wheelchair has gone before,” as Morgan put it in a tweet.
“The
development of self-driving wheelchairs has some clear first-mover
advantages over cars,” says Sukhi Gill, DXC’s chief technology officer
for Europe, Middle East, and Africa. “They operate mostly in known and
controlled environments — think home, garden, park, and local store.
They move a lot slower and have to contend with far fewer possible
hazards. By applying some learnings and technologies from the automotive
industry, the self-driving wheelchair represents a realistic mid-term
goal for this project.”
Ever
the optimist, Scott-Morgan says he envisions “being able to speed
through an obstacle course or safely make my way through a showroom of
porcelain vases.”
Meanwhile, says Jerry Overton, vice chair and
director of AI at the Scott-Morgan Foundation, there’s an ongoing
project to give Scott-Morgan the smartest home possible. “We are
designing Peter's home as a network of home-automation devices and
personal applications.”
This network includes smart thermostats,
smart bulbs, motion sensors, cameras, his avatar, and messaging
applications. “Finally, we are using a central artificial intelligence —
nicknamed CHARLIE — to coordinate the network,” he adds. Overton offers
an example of what would happen if Scott-Morgan's biosensors suggest
that his body temperature is becoming too high: “CHARLIE can take the
initiative to lower the room temperature and alert his healthcare
providers that there may be a problem.”
It takes a rare person to
serve as a living tech experiment. As I got to know Scott-Morgan, I
continually asked myself if I could ever endure the exceedingly
uncertain nature and psychologically harrowing experience of rewiring my
entire persona.
I didn’t know. So I asked the person closest to
Scott-Morgan what he thinks. “As things are today, I might not wish to
stay alive as long as Peter has if I were to get ALS,” says his husband,
Francis. “But I hope that if you ask me again in five years that my
answer will absolutely be yes.”
The
following day, I receive an email from Scott-Morgan, who has obviously
heard about my question to Francis. The subject line reads “Love never
dies.” “Whatever Francis tells you (and tells himself) about not being
as brave as me, that is what is scientifically categorized as
‘bollocks’!” he writes. “Bravery isn’t about not feeling scared, it’s
feeling scared but going on regardless.
The Scott-Morgans in the early 1980sPeter Scott-Morgan
The Scott-Morgans in 2020Peter Scott-Morgan
“Here’s
how it would play out,” he continues. “If Francis ever felt like giving
up, I would remind him (as he occasionally does to me) that that’s not
what Scott-Morgans do. ALS is the ultimate bully, and we have never
given in to bullies. I would reassure him that I would always be there,
fighting by his side.”
The most extraordinary thing about
Scott-Morgan, beyond his defiant optimism, is that he sees his diagnosis
as a blessing, not a curse. “Without my ALS, Francis and I would have
enjoyed ourselves but achieved little,” he says. “Now we may be able to
help rewrite the future of what it means to be disabled. How do you
weigh a trade-off as gargantuan as that?”
I
realize that I’ve never known anyone so adamantly alive. His closing
words speak to what inspires all the Rebels. “Ultimately, however
uncertain Francis may feel now, I am not in the least uncertain — for
one very simple reason,” writes Scott-Morgan. “If there is one thing
that is certain in my universe, Francis would never voluntarily leave me
alone. Any more than I would him.
“I am a prime candidate for the
fast track to death, but I will pass on the offer,” he adds. “I am
frankly far too busy having fun.”
8 days ago — The pandemic killed so many dialysis patients that their total number shrunk for the first time in nearly half a century. Few people took ...
Saikia in intensive care: the transplant has led to questions of medical ethics
