“I Can’t Walk, But I Can Fly”:
Fred’s Metaphor for Hope
Fred’s Metaphor for Hope
Preface
In early 2014 I was in search of my first photo essay. The topic was to be “Living with MS” (multiple sclerosis). Most people have no idea what this disease is about. And MS is often characterized by symptoms that don’t include visible loss of function, though nevertheless painful and life-changing. I wanted to show that MS in its most visible form can rob its victims of their independence. But it was no easy task to find someone who would be willing to share the most intimate aspects of their life. As one perspective subject said: “You would have to be in my bedroom in the middle of the night when I struggle to get to the bathroom!”
When I thought this story would never happen, good luck connected me to forty-four year old Fred Schwartz who had been diagnosed twenty years earlier. He had no use of his legs and had a weakened left hand. Without hesitation, Fred wanted to be part of the story. He wanted the world to know what living with MS is all about so that people would support the cause for a cure. Without the slightest embarrassment, Fred opened his life to me and my camera. With all that I saw, what impressed me most was Fred’s remarkably positive can-do spirit in spite of what he had lost. He even became a skydiver to fundraise for MS. With September 8, 2020 set for his fourth skydive, I knew it was time for an update about Fred, and I needed to see him fly!!
Introduction
Initially I though this would be an update about how Fred’s condition has changed in six years, and it surely has with continued loss of function and on-going illness. But I soon realized that the real story is not about what Fred has lost, but rather about what Fred has maintained- a positive outlook about himself and what he can accomplish. Few able-bodied people would ever think about jumping out of an airplane. But with virtually no defensive capabilities of his own, Fred is willingly strapped to a partner who pushes him into the air at 13,000 feet.
In 2014 the story was about MS… www.tgoldmanphotography.com/living-with-ms.html
In 2020, the story is about Fred- a true inspiration. And there’s also an unexpected story within the story which took six years to fully understand and appreciate. It will be revealed- so keep reading!
Losing His Independence- And More!
Shortly after “Living with MS” was published, Fred suffered a urinary tract infection (UTI) with a high fever. After two days in the hospital and a stint in rehab, Fred’s left arm and hand function were gone. Before this loss Fred had been able to make the “transfers” needed for his independence: bed to wheelchair, wheelchair to toilet and shower, and he was able to dress, feed himself and drive- all with difficulty but doable. But with only one functioning hand, his independence was gone. Would his positive spirit be soon to follow?
For several years, Fred had a boarder living in his finished basement. Having a full time job, Kevin provided minimal support to Fred. But after Fred lost the use of his left hand, Kevin agreed to become a full time care giver, literally Fred’s lifeline. This was an easy transition because they had become friends- Fred trusted Kevin to be there for him.
In June 2020 both Kevin and Fred suffered a devastating loss: One morning Kevin did not come to Fred’s bedroom to get him up. Fred called Kevin’s phone but there was no answer. Finally he called the police to investigate what would be horrifying news. With no warning that he was having problems, Kevin took his life in Fred’s basement. Kevin lost his life and Fred lost his lifeline. How much loss can anyone take and still remain whole? But as always, Fred pressed on proving the spirit that is at his core. A new caregiver was soon in place and Fred was thinking about his next skydive. But Kevin always remains in his thoughts: “Sometimes I find myself talking out loud to him!”
Living with MS 2020
Just as my first meeting with Fred six years ago, September 8, 2020 began in his bedroom to observe his wakeup routine.
My initial reaction was that Fred presented as bed-bound, hardly looking like someone who would be jumping out of an airplane in a few hours. Having a fully equipped workstation over a hospital-style bed spoke to a very narrow existence.
Fred’s days begin with care giver Eric emptying the urine bag that collects from the indwelling catheter implanted after the UTI. Fred is not embarrassed about the realities of his disability: “If you’re going to do a photo essay about living with MS, you have to show how I live.” Undoubtedly his total honesty and never needing to hide are key to his can-do spirit.
Eric puts Fred through a stretching routine because even unresponsive limbs need attention, particularly before a skydive. Fred seems to enjoy the workout.
Fred needs to get from bed to his high-tech power chair- but how?
Eric wraps Fred in a sling that will carry him on his first flight of the day.
In 2014, Fred could launch himself from bed to wheelchair, but no more. This is also his position for bowel movements: “I’ve got no choice; no one wants to have someone pull their underwear off and have a lift hang them over a bed pan- you would think it would be humiliating, but I’m just used to it; that’s how I live- I’m an open book.”
Fred is lowered onto his power chair.
Eric puts on the sneaker that will be lost during Fred’s upcoming free-fall. Fred will comment upon seeing his bare foot: “I haven’t been to a shoe store in a long time because I really don’t wear out shoes.”
Ready to leave for the airport, Fred looks proud and almost regal upon his throne. He’s ready for “Livin’ the Dream.” MS does limit what he can do of course, but he does not allow it to diminish his spirit or take away his power.
Fred, what is your message to people who face challenges in their lives when they feel they have no power to do anything?
“To say you are powerless means you’re giving power to other people, like saying they control whether or not YOU have power; I can choose to do a skydive or not… You have personal power over your own actions- that would be my message.”
Of course there are people who are totally disabled and Fred could face that someday. The essence of Fred’s message is to maintain as much spirit, hope, and even power as possible.
Skydive.MS 2020
It was mid-morning when we arrived at Skydive Cross Keys which is located at a small airport in New Jersey. Fred wears his www.Skydive.MS mask. He raised over $6000 for the National MS Society.
After what seemed as unending signatures on an eternity of release forms, Fred settles in for the orientation video. The message couldn’t be clearer: “Skydiving is dangerous and you could die!”
But this is Fred’s adventure and he’s going to fly: “When I look down I’m thinkin’- ‘I hope this goes well’; it’s so intense sitting on the edge of the plane.” When Fred jumps out he is just like any skydiver- MS is not an issue just as six years ago when he drove like everyone else.
Peter Rovnan, Fred’s flight instructor and tandem partner, does meticulous preparation for his special student.
Fred’s legs are carefully wrapped to ensure they stay in place.
Peter is particularly concerned about Fred’s arms during the 120mph free-fall. Fred is confident that he can hold his arms tight to his chest.
With preparations complete, Fred is ready to fly.
Fred and Peter make their way to the boarding area as Romeo’s single engine fires up.
Fred’s in-flight videographer does a quick interview.
Romeo make a very noisy entry… The camera freezes the prop which could not be seen with the naked eye.
The team lifts Fred into the plane.
Fred waves to his personal photographer.
And gives his signature thumbs-up... This is such a special moment for Fred.
The pilot signals departure while Fred looks out the window.
Romeo takes off with its cargo of skydivers.
While we wait, Fred’s reality is positioned at the landing site.
After fifteen minutes of squinting into the sun, a half dozen tiny colorful specs appear directly overhead which gradually turn into parachutes. One of these is Fred, but which one?
Is that Fred? It’s too far away to tell and the sky is too bright to look at for more than a second or two.
It is Fred- his special haircut is the giveaway.
Final approach- Peter lowers his landing gear while Fred gives his always hopeful thumbs-up.
Gliding to a soft landing.
“Houston, Tranquility Base here- the Eagle has landed!!” (Neil Armstrong)… What a relief to see Fred safe and sound, and with a smile on his face.
The in-flight videographer must have taken the express route back to earth. He runs over to Fred for the final interview: “All right Freeeeed, welcome back to earth my friend- how did you like that?”
“It was awesome!…Thanks to Peter, thanks to Buzz, and thanks to Cross Keys!”
Fred’s in-flight video is available at www.skydive.ms
And then the moment of pure ecstasy as the experience flows through every bone in his body.
And then the moment when reality sets in.
And then a quiet moment to make sense of what he's just experienced and how it fits into his life with MS.
And then the moment when Skydive.MS 2020 begins to fade into a memory. But Fred already has hope for Skydive.MS 2021 because he always has hope... While he may not be able to walk, he absolutely CAN fly...You Go Fred!
Fred’s Metaphor for Hope
Fred, your motto about flying is profound: if you can fly with MS, anyone can fly- right?
“I agree; I can’t walk, but I can fly is a metaphor- whatever your challenge, don’t let it get in the way of achieving or enjoying.”
Where did your unending hope come from?
“When I met with a pastor to begin the process of converting to Catholicism, I asked why God is punishing me with this terrible disease- I’m a good person and I don’t deserve this.
He said that it’s not a punishment, in fact suffering can be a blessing and he compared it to Jesus suffering on the cross which was a blessing for all humanity, and that I should unite my suffering with that of Jesus; he said that suffering with grace is a blessing... That was a profound conversation, almost life-changing.
I’m a believer and I believe there is an after-life which is affected by how you live in this life, so I try to suffer with grace... In practical terms, you just get used to it- it’s my normal everyday; it’s not like I woke up and suddenly had this struggle.”
As your condition worsens, how would you describe your emotional state and spirit today?
“I guess I’m lonely as I think more about the fact that I never married and don’t have any kids- as you grow older, having children becomes more important; so I’m not going to have that though I guess I could still have children; I definitely want to pursue having a relationship- I had a girl I was dating just recently but it kind of fizzled out; I think I’m a pretty good person, interesting, funny, but I fear that when women see me the first reaction will not be good- it would be tough dating that guy so it makes me hesitant... I talk to a therapist once a week who suggested a website called ‘Meetup’ where you meet people virtually so I need to look into it- I have a saying: ‘Don’t talk about it- DO IT!!’… so I need to put that into action.”
You are aware of losses in your life like not being married and not having children, but I don’t hear you sounding like a person who is giving up, or seriously depressed or that you lost your spirit:
“Yeah, my spirit is there, I think so; I want to go out and do things and meet people, but it’s hard to do these days with the virus.”
How do you, both emotionally and physically, bring yourself to skydive?
“I’ve done it before and I want to do something different; I spend most of my time sitting around not doing much; it’s exhilarating to do something like that, to break out from my shelter.
My tag line, I can’t walk, but I can fly, is something I can do in conjunction with ‘MS Walk’ to raise money; I can do the walk in my wheelchair but I like to stand out from the crowd and be an example- I like being someone where people look at me and say: ‘Wow, that guy is doing something really exceptional!’
Skydiving is so awesome- going so fast, hands clutched to my chest then open up my arm; the videographer is right their smiling and given fist bumps- he goes off and then the chute is deployed which is a sudden jolt slowing down from 120mph; it’s so relaxing and so quiet; you can see Philly at Atlantic city- it’s great; I want to do it again, but it’s too bad I lost my sneaker."
What are your expectations for the progression of the disease?
“I’m starting to have weakness in my right hand- I hope that doesn’t continue or worsen; if I couldn’t use my right hand I would have to be fed, and someone would have to wipe me after bowel movements; I guess I could stay in my home as long as I had sufficient care; I would have to be in that situation to see how I would react but it seems like it would be pretty tough.”
Final Thoughts
Fred’s condition has been on the decline since his diagnosis in 1994, twenty six years ago. Loss of function has been both gradual and in step changes. In the six years I’ve known him he suffered a UTI resulting in loss of function of his left arm and hand, a reoccurring severe case of Clostridioides difficile (also known as C. diff), and a pressure sore that kept him in bed on his side for six months. It’s one thing after another including the gut-punch of his care giver’s suicide. And he’s losing strength in his right hand.
Fred could easily justify giving up hope, but he doesn’t. He has too much life to live and he wants to live it with grace. Fred is an inspiration for anyone who has lost hope for any reason.
I think a lot about the struggles people have and how they respond to challenges. In the last few years I’ve come to think about poverty and homelessness, and that brought me to my current focus on racism. It may seem very far away from Fred's situation, but I think about the struggles of Black people for whom the societal illness of racism keeps them from walking... walking through the door of equality. Like Fred, they have every right to give up hope... to give up hope on America. Yet, like Fred, Black people keep trying. So many Black people continue to march, speak out, write books, innovate, teach, run for office, lead the nation. Like Fred, they never give up hope to the forces that try to keep their legs shackled.
*****
A special thanks to Skydive Cross Keys for giving Fred the opportunity to fly- their care for him was second to none!!
One More Thing:
“The Story Within The Story"
Our politics couldn’t be more different. I knew that from the moment I first arrived at Fred’s home in 2014- it was the bumper sticker on his van. As I got to know Fred I decided that politics would not be discussed between us. Maybe that was cowardly, but my interest in Fred has never been about changing his views, but always about his health and welfare, and sharing his story with the world. Our friendship has grown during the last six years, just as the country’s political divide has widened
I learned from my friendship with Fred the value of establishing common ground. Most people have way more in common than we would ever suspect by watching cable news’ incessant polarization. And no, people on the other side really don’t want to destroy this country and the world, though we might be led to believe otherwise. If Fred and I ever have that conversation, it would be tough but would come from a place of friendship.
This is a story about hope: Fred’s enduring hope for a quality life where he controls his destiny. This story also offers hope that we can get along as human beings in spite of our differences as Fred and I have done, and that’s “The Story Within The Story- The Hidden Gem!”… My thanks to Fred for giving me that hope during these most challenging times...You Go Fred!!
End
Published September 17, 2020