The 26-year-old Ohioan has not let his rare genetic condition prevent him from having a rich life. But Trump’s second administration is creating new risks to his fragile health.
Thank you Shane for sharing your story and for your thoughtfulness in caring about other EB patients and in leaving a legacy for them. Your strength and grace is inspiring. Thank you to Jim and the Bulwark for bringing us Shane’s story.
Thanks for sharing your story Shane. Thanks for writing this story Jim. I too have a rare/orphan disease, Friedreich’s ataxia (FA).
It is always disabling and often fatal. It is multi-system starting with the nervous system, causing degeneration. People with FA are typically wheelchair users. FA can cause deafness, blindness, diabetes, and more. It also causes cardiomyopathy, which is what makes the disease lethal.
I couldn’t agree more with Shane. There are a lot of us in the country with a disease, approximately 30 million. 90% of these diseases do not have a treatment or care. Many of us are dependent on Medicaid, Medicare and Social Security. Just like Shane, people with FA need a cure. We need a robust NIH and FDA. We need strong science. We certainly need to live in a world where we are viewed with the compassion I’m reading here in the comments. Life being sick is hard enough without having to worry about the government, taking away the little benefits/supports we have.
I've been thinking about Shane since I read Jim's very meaningful profile yesterday. Just now I watched their interview video. Reacting in so many directions but mainly just thinking about choices we have in our lives. A central one is - do I build other people up...or not? ...do I even sometimes go out of my way to tear people down? Shane is a builder.
The way Shane reflected on JD Vance & RFK jr - those two have never been tested as Shane is nearly every day. Shane expressed his worries about their actions and potential for harm. He spoke without vitriol. He spoke with compassion & concern for all who might be negatively affected. That's where he puts his spirit - considering what could build up his fellow humans.
In his interview with Jim, Shane's setting included a couple pop culture items referencing Star Trek and the United Federation Planets. I feel Shane took to heart that '60's idealist sci-fi ethic, that we could rise above our limiting little planet with its gravity, its hatreds & fears, its diseases & small imaginations. We dream of something better, something not quite here yet, something we build by tackling the challenges that come our way & by building up others.
Boldly go, hermano! I'll take hold of your coattails and fly. - j
You are very perceptive! Star Trek showed me a world where anyone can explore the stars, no matter who you are. It made a big difference to me when I was growing up. I would (and still do) distract myself during my bandage changes and dream of being a Starfleet captain.
It probably wouldn’t surprise you to know that I’m also a big fan of the Twilight Zone and its creator Rod Serling. That postwar moderate liberalism rooted in humanist principles is really my jam. Both Rod Serling and Gene Roddenberry showed that a better world is possible if we lift each other up and strive for a future that respects our inherent dignity and limitless potential.
Thank you for sharing your story Shane and thank you Jim for bringing it to us.
It’s inspiring to hear how you have been able to live life to the fullest despite your condition. I can’t imagine what it’s like to go through what you deal with daily, and I think it’s a great testament to your character how you are focused on helping others. Doggie’s Friends sounds like a great way to help bring joy and comfort to the next generations of kids dealing with difficult times. I’m glad that despite your physical limitations you have still been able to make a difference.
With so much of the news these days about all the chaos and connivers, I am glad to see The Bulwark reporting on someone making a positive impact on the world.
People like Shane are why I’m proud to be part of The Bulwark.
Like Shane, I live in Cincinnati, have a couple of orphan diseases, and have a wonderful team of doctors at the University of Cincinnati. Mine are respiratory. I sometimes have a cough that sounds, according to a dear, deceased friend, as if I'm going to cough up my lower digestive track. Close. My stomach into my thorax. That's fixed now.
Recently my doctors added another diagnosis. (I won't list them all.). Eosinophilic asthma. I have too many eosinaphilics and they Inflame my respiratory tract. But there's a treatment! It's a shot once a month for three months, then every other month. I've had one shot. And I barely cough! I'm still short of breath sometimes and have a lot of fatigue.
When I got up this morning and realized that I wasn't coughing I was so happy.
And I thought to myself, "That's science!"
Louder for those in the back:
"THAT'S SCIENCE!"
I want to keep all our agencies that work on science.
There are days when the cruel perversity of this administration is unbearably heavy. This story hit hard. I hope I can help Shane in some small way carry the load and fight.
Thank you for sharing Shane’s story with all of us. What a gift to know that we are in the world at the same time that he is 💕. I just made a donation to Doggie and Friends. I had a stuffed horse named Stumpy (!) who helped me get through many things as a child. I’m now blessed enough as an adult to have a real horse! Animals, both stuffed and living, have been my beloved companions throughout life and they offer so much emotional sustenance and healing. I am honored to support Shane’s work!
Hey Shane, I'm glad to be part of the Bulwark family too, where I could run across someone like you. Nice to meet you via Jim's article. Thanks for explaining the nuts and bolts of the current discombobulation of government services impacting you. You are not alone, I've heard you, and will pray for you. Jello shots? Good grief, I much rathered shotgunning a beer back then. Hang in, Dave.
Shane here - my heart is filled with gratitude after reading all these lovely comments! I’m grateful to be a part of the Bulwark family! My condition is very rare and very complex, and explaining my situation is second nature to me. The more people who know about EB, the better. It’s very lonely living with a condition that is so rare and unheard of.
If anyone has any questions, fire away! My email is shanespace1701@gmail.com if you want to message me privately.
I am incredibly grateful to Shane and Patsy for sharing their story and to Jim for writing it. As we are currently living in a time where all we see is the worst that humanity has to offer, you, Shane, offer a glimpse of the best. I am genuinely inspired to do more and to be a better person. Thank you.
Thank you for this story. In a small way, I can relate to Shane and his family because my daughter was born with a rare tumor twisted around her spinal cord, and over the course of 10 years, through the work of dedicated surgeons and medical professionals, and the help of Shriner's Hospital, she is a relatively happy, healthy teen today, looking forward to forging her own path to contributing to the world.
As I read the last lines of Jim’s article, I felt tears beginning to well up, as I was moved by Shane and his story and from empathy with the trials and tribulations of this young man and his family. From my daughter and our family having experienced a small fraction of their pain and suffering. Of the scary surgeries, the many nights spent in a hospital room staring pain square in the eyes. But also within these tears was gratitude for the medical professionals who helped, and also for the government job through which my wife was able to have medical insurance that paid the well over $1 million to keep one little girl alive, healing, and growing stronger for the first 10 years of her life.
Then I felt ashamed.
Ashamed for my tears of empathy and for what they have come to represent for the Democratic Party and those in opposition to the current administration and the MAGA movement. I felt shameful for my "liberal tears", as they are now known, because MAYBE these “liberal tears” are why we find ourselves so often becoming the losers in political battles to so-called populist movements. Maybe we are too frequently — and clearly, to a fault — moved and motivated by our empathy for our fellow human being, regardless of race, creed, or economic contribution.
Maybe we care too much for other people, for doing the right thing, for not appearing to be confrontational, or judgmental, or part of any number of systems biased against those in various minorities, that we don't have the "winner takes all" prizefighter mentality it takes to secure victory in these all-too-important political battles. Maybe we spend too much time making space for minority causes, instead of consolidating our power and uniting behind a common cause. Maybe we are moved to tears by people like Shane and their stories, and are so emotionally disturbed by their plights, that our empathy moves us to "do what is right" even when those around us will resort to name-calling, reputation smearing, norm bending, and law breaking to get what they want, and to get ahead.
I felt ashamed because we are seen as snowflakes by those unlike us, and as soft, or unwilling to be ruthlessly calculating by those in our own party. Maybe we are incapable of "breaking a few eggs" to get that omelet on the table.
And then I felt shame for feeling that shame. I felt ashamed, and then slowly more and more angry, that I felt bad for my “liberal tears”. Mad at myself that I let myself feel ashamed and be bullied for my empathy — my empathy for those who are less fortunate, for those who struggle to survive and live a decent life. Mad because it used to be seen as noble, as just, as GOOD, to be driven by the urge to lift people up when they are down, not kick them down further in order to reach for higher heights.
And I felt angry that the dehumanization from the bullies has somehow succeeded in tamping down and choking off the efforts of good, honest, decent people who want to steer the ship away from the edge of the abyss.
Many people who claim to want to make America great would say that people like Shane are inherently losers, that they aren't worthy of protection because they are weak or incapable. Yet, they’d be wrong, of course! Look at how much Shane has been able to accomplish, in the face of adversity. Certainly more than many "normal" people might in their lives. To me at least, Shane isn’t a loser, he’s a hero.
But not everyone is as capable as Shane. That doesn't mean they aren't worthy of our help and protection. The reason they are worthy of our help and protection isn't related to how much they can contribute, nor how helpless or incapable of protecting themselves they may be, or may seem to be.
They are worthy of protection because WE HAVE THE POWER to protect them.
We have the power to help and protect so many, yet so many are told that the only option is to protect themselves and actively hurt everyone else.
I think most Americans would agree that's not right.
People like Shane are not an inconvenience to be stepped over or swept aside or worse, pushed out into rushing traffic, so we can pursue our lives of comfort and prosperity. People like Shane are the reason America is and has been a special place in the world — because it is so often that Americans come from a past of inequality, of injustice, of suffering, and discover that somewhere in America, they are able to find peace, to find justice, to discover their calling and lead a life of fulfillment.
We Americans are special because have the power to help others. And if we forget that helping people like Shane is the reason America is special, then America will become a special place known for being especially cruel and inhumane to people like Shane. But also to people like my daughter, to your kids, and to your neighbor, and their kids…
There are so many in our society today who would call people in need of help “parasites". And there are certainly plenty who would hoard our vast, immeasurable resources for themselves and their chosen few, because they are afraid that sharing what they have would make them weak and powerless and forced to suffer with the rest. Their fear causes them to prey upon those they see as weak, as unable to fight back.
Shane represents the people we need to fight for now, fight for everyday. We must fight for people like Shane, but also, people like my daughter, people like your kids, people like your neighbors and their kids and all our elderly and infirm, and those temporarily down on their luck, or those who need a second chance. People all over this great country, who may now or who one day may be facing their own circumstances where they may just need some help, and the ability to depend on a political system and government that doesn’t punish people for wanting to make that help happen.
Shane may be an individual defined in many ways by his rare circumstances, but many of us can relate to Shane. To not only his suffering, but his inspiring actions. In our fight to protect what is good and right and true about America, we need to hold people like Shane up as examples, as shining beacons for why it matters so much to help and protect each other.
That ability to relate to each other, to look outside ourselves and relate to the circumstances, needs, desires, and dreams of others — the drive to help others and not just ourselves — is our greatest source of power, not a source of shame.
Preserving THAT power is our reason to fight, and it’s the reason we have to win.
Beautiful story of a beautiful man. What courage. Maybe he could transplant some to our cowardly government. Hang in there Shane. My prayers are with you!
Thank you Shane for sharing your story and for your thoughtfulness in caring about other EB patients and in leaving a legacy for them. Your strength and grace is inspiring. Thank you to Jim and the Bulwark for bringing us Shane’s story.
Thanks for sharing your story Shane. Thanks for writing this story Jim. I too have a rare/orphan disease, Friedreich’s ataxia (FA).
It is always disabling and often fatal. It is multi-system starting with the nervous system, causing degeneration. People with FA are typically wheelchair users. FA can cause deafness, blindness, diabetes, and more. It also causes cardiomyopathy, which is what makes the disease lethal.
I couldn’t agree more with Shane. There are a lot of us in the country with a disease, approximately 30 million. 90% of these diseases do not have a treatment or care. Many of us are dependent on Medicaid, Medicare and Social Security. Just like Shane, people with FA need a cure. We need a robust NIH and FDA. We need strong science. We certainly need to live in a world where we are viewed with the compassion I’m reading here in the comments. Life being sick is hard enough without having to worry about the government, taking away the little benefits/supports we have.
I've been thinking about Shane since I read Jim's very meaningful profile yesterday. Just now I watched their interview video. Reacting in so many directions but mainly just thinking about choices we have in our lives. A central one is - do I build other people up...or not? ...do I even sometimes go out of my way to tear people down? Shane is a builder.
The way Shane reflected on JD Vance & RFK jr - those two have never been tested as Shane is nearly every day. Shane expressed his worries about their actions and potential for harm. He spoke without vitriol. He spoke with compassion & concern for all who might be negatively affected. That's where he puts his spirit - considering what could build up his fellow humans.
In his interview with Jim, Shane's setting included a couple pop culture items referencing Star Trek and the United Federation Planets. I feel Shane took to heart that '60's idealist sci-fi ethic, that we could rise above our limiting little planet with its gravity, its hatreds & fears, its diseases & small imaginations. We dream of something better, something not quite here yet, something we build by tackling the challenges that come our way & by building up others.
Boldly go, hermano! I'll take hold of your coattails and fly. - j
You are very perceptive! Star Trek showed me a world where anyone can explore the stars, no matter who you are. It made a big difference to me when I was growing up. I would (and still do) distract myself during my bandage changes and dream of being a Starfleet captain.
It probably wouldn’t surprise you to know that I’m also a big fan of the Twilight Zone and its creator Rod Serling. That postwar moderate liberalism rooted in humanist principles is really my jam. Both Rod Serling and Gene Roddenberry showed that a better world is possible if we lift each other up and strive for a future that respects our inherent dignity and limitless potential.
- Shane DiGiovanna
Thank you for sharing your story Shane and thank you Jim for bringing it to us.
It’s inspiring to hear how you have been able to live life to the fullest despite your condition. I can’t imagine what it’s like to go through what you deal with daily, and I think it’s a great testament to your character how you are focused on helping others. Doggie’s Friends sounds like a great way to help bring joy and comfort to the next generations of kids dealing with difficult times. I’m glad that despite your physical limitations you have still been able to make a difference.
With so much of the news these days about all the chaos and connivers, I am glad to see The Bulwark reporting on someone making a positive impact on the world.
People like Shane are why I’m proud to be part of The Bulwark.
Like Shane, I live in Cincinnati, have a couple of orphan diseases, and have a wonderful team of doctors at the University of Cincinnati. Mine are respiratory. I sometimes have a cough that sounds, according to a dear, deceased friend, as if I'm going to cough up my lower digestive track. Close. My stomach into my thorax. That's fixed now.
Recently my doctors added another diagnosis. (I won't list them all.). Eosinophilic asthma. I have too many eosinaphilics and they Inflame my respiratory tract. But there's a treatment! It's a shot once a month for three months, then every other month. I've had one shot. And I barely cough! I'm still short of breath sometimes and have a lot of fatigue.
When I got up this morning and realized that I wasn't coughing I was so happy.
And I thought to myself, "That's science!"
Louder for those in the back:
"THAT'S SCIENCE!"
I want to keep all our agencies that work on science.
Great piece. Thanks to Shane and Patsy for sharing their story, and to you for writing it so beautifully.
There are days when the cruel perversity of this administration is unbearably heavy. This story hit hard. I hope I can help Shane in some small way carry the load and fight.
Thank you for sharing Shane’s story with all of us. What a gift to know that we are in the world at the same time that he is 💕. I just made a donation to Doggie and Friends. I had a stuffed horse named Stumpy (!) who helped me get through many things as a child. I’m now blessed enough as an adult to have a real horse! Animals, both stuffed and living, have been my beloved companions throughout life and they offer so much emotional sustenance and healing. I am honored to support Shane’s work!
Hey Shane, I'm glad to be part of the Bulwark family too, where I could run across someone like you. Nice to meet you via Jim's article. Thanks for explaining the nuts and bolts of the current discombobulation of government services impacting you. You are not alone, I've heard you, and will pray for you. Jello shots? Good grief, I much rathered shotgunning a beer back then. Hang in, Dave.
Shane here - my heart is filled with gratitude after reading all these lovely comments! I’m grateful to be a part of the Bulwark family! My condition is very rare and very complex, and explaining my situation is second nature to me. The more people who know about EB, the better. It’s very lonely living with a condition that is so rare and unheard of.
If anyone has any questions, fire away! My email is shanespace1701@gmail.com if you want to message me privately.
I cried because I had no shoes… ❤️
Great piece, thanks for sharing Shane's story with us.
I am incredibly grateful to Shane and Patsy for sharing their story and to Jim for writing it. As we are currently living in a time where all we see is the worst that humanity has to offer, you, Shane, offer a glimpse of the best. I am genuinely inspired to do more and to be a better person. Thank you.
Thank you for this story. In a small way, I can relate to Shane and his family because my daughter was born with a rare tumor twisted around her spinal cord, and over the course of 10 years, through the work of dedicated surgeons and medical professionals, and the help of Shriner's Hospital, she is a relatively happy, healthy teen today, looking forward to forging her own path to contributing to the world.
As I read the last lines of Jim’s article, I felt tears beginning to well up, as I was moved by Shane and his story and from empathy with the trials and tribulations of this young man and his family. From my daughter and our family having experienced a small fraction of their pain and suffering. Of the scary surgeries, the many nights spent in a hospital room staring pain square in the eyes. But also within these tears was gratitude for the medical professionals who helped, and also for the government job through which my wife was able to have medical insurance that paid the well over $1 million to keep one little girl alive, healing, and growing stronger for the first 10 years of her life.
Then I felt ashamed.
Ashamed for my tears of empathy and for what they have come to represent for the Democratic Party and those in opposition to the current administration and the MAGA movement. I felt shameful for my "liberal tears", as they are now known, because MAYBE these “liberal tears” are why we find ourselves so often becoming the losers in political battles to so-called populist movements. Maybe we are too frequently — and clearly, to a fault — moved and motivated by our empathy for our fellow human being, regardless of race, creed, or economic contribution.
Maybe we care too much for other people, for doing the right thing, for not appearing to be confrontational, or judgmental, or part of any number of systems biased against those in various minorities, that we don't have the "winner takes all" prizefighter mentality it takes to secure victory in these all-too-important political battles. Maybe we spend too much time making space for minority causes, instead of consolidating our power and uniting behind a common cause. Maybe we are moved to tears by people like Shane and their stories, and are so emotionally disturbed by their plights, that our empathy moves us to "do what is right" even when those around us will resort to name-calling, reputation smearing, norm bending, and law breaking to get what they want, and to get ahead.
I felt ashamed because we are seen as snowflakes by those unlike us, and as soft, or unwilling to be ruthlessly calculating by those in our own party. Maybe we are incapable of "breaking a few eggs" to get that omelet on the table.
And then I felt shame for feeling that shame. I felt ashamed, and then slowly more and more angry, that I felt bad for my “liberal tears”. Mad at myself that I let myself feel ashamed and be bullied for my empathy — my empathy for those who are less fortunate, for those who struggle to survive and live a decent life. Mad because it used to be seen as noble, as just, as GOOD, to be driven by the urge to lift people up when they are down, not kick them down further in order to reach for higher heights.
And I felt angry that the dehumanization from the bullies has somehow succeeded in tamping down and choking off the efforts of good, honest, decent people who want to steer the ship away from the edge of the abyss.
Many people who claim to want to make America great would say that people like Shane are inherently losers, that they aren't worthy of protection because they are weak or incapable. Yet, they’d be wrong, of course! Look at how much Shane has been able to accomplish, in the face of adversity. Certainly more than many "normal" people might in their lives. To me at least, Shane isn’t a loser, he’s a hero.
But not everyone is as capable as Shane. That doesn't mean they aren't worthy of our help and protection. The reason they are worthy of our help and protection isn't related to how much they can contribute, nor how helpless or incapable of protecting themselves they may be, or may seem to be.
They are worthy of protection because WE HAVE THE POWER to protect them.
We have the power to help and protect so many, yet so many are told that the only option is to protect themselves and actively hurt everyone else.
I think most Americans would agree that's not right.
People like Shane are not an inconvenience to be stepped over or swept aside or worse, pushed out into rushing traffic, so we can pursue our lives of comfort and prosperity. People like Shane are the reason America is and has been a special place in the world — because it is so often that Americans come from a past of inequality, of injustice, of suffering, and discover that somewhere in America, they are able to find peace, to find justice, to discover their calling and lead a life of fulfillment.
We Americans are special because have the power to help others. And if we forget that helping people like Shane is the reason America is special, then America will become a special place known for being especially cruel and inhumane to people like Shane. But also to people like my daughter, to your kids, and to your neighbor, and their kids…
There are so many in our society today who would call people in need of help “parasites". And there are certainly plenty who would hoard our vast, immeasurable resources for themselves and their chosen few, because they are afraid that sharing what they have would make them weak and powerless and forced to suffer with the rest. Their fear causes them to prey upon those they see as weak, as unable to fight back.
Shane represents the people we need to fight for now, fight for everyday. We must fight for people like Shane, but also, people like my daughter, people like your kids, people like your neighbors and their kids and all our elderly and infirm, and those temporarily down on their luck, or those who need a second chance. People all over this great country, who may now or who one day may be facing their own circumstances where they may just need some help, and the ability to depend on a political system and government that doesn’t punish people for wanting to make that help happen.
Shane may be an individual defined in many ways by his rare circumstances, but many of us can relate to Shane. To not only his suffering, but his inspiring actions. In our fight to protect what is good and right and true about America, we need to hold people like Shane up as examples, as shining beacons for why it matters so much to help and protect each other.
That ability to relate to each other, to look outside ourselves and relate to the circumstances, needs, desires, and dreams of others — the drive to help others and not just ourselves — is our greatest source of power, not a source of shame.
Preserving THAT power is our reason to fight, and it’s the reason we have to win.
What a fabulous piece of reporting; I enjoyed this very much. Shane DiGiovanna is exactly what I needed to know today.
Beautiful story of a beautiful man. What courage. Maybe he could transplant some to our cowardly government. Hang in there Shane. My prayers are with you!