The Compassion Challenge
Why Your Worst Pain is Your Biggest Opportunity
I’m going to let you in on my biggest secret — the one that I would least like to be made public. The one I worry about professional contacts discovering. No, it’s not a scandal, but I still dread the idea of admitting it or saying the words out loud.
As I write this, a big part of me is screaming, “DON’T DO THIS!” Why?
Because this thing is a major challenge, but this challenge does not define me. It is not who I am. It does not hold me back in the way that you might think. It sometimes gets in the way of my plans, but I find a way to route around it and I always get back on track.
I have HHT.
I have a rare blood vessel disorder known as HHT. For many, it causes nosebleeds here and there. For me, it causes bleeding from eyes, nose, mouth, throat, and internal organs, along with bouts of extreme complicated migraines that mimic things like paralysis and seizure.
My struggle with HHT dates back to one of my earliest memories — waking up in a pool of blood and my first visit to the emergency room. I was four years old. That marked the beginning of a long process of doctor visits and attempts at diagnosis.
Most people seem to think that “migraine” means
For me, migraines typically start out with warping in my vision — my peripheral vision darkens, like I’m looking down a long, dark tunnel, and sometimes my vision completely blacks out. I experience temporary blindness.
When it happens, I pray that there is something to lean on nearby, because a total loss of balance is next, quickly followed by loss of motor control and weakening of my muscles.
Migraines can sneak up slowly or strike hard and fast, and last anywhere from 20 minutes to months.
Migraines can be triggered by lights, sounds, smells, or any number of other things. Different people have different migraine triggers, and there is a complex relationship between migraine and diet that I still don’t understand.
Sometimes I flip on a light switch and immediately fall to the ground — migraines can strike as if a ton of bricks have just been dumped on my head.
A migraine can feel like a severe flu, beginning with extreme nausea, dizziness, vomiting. My head swims and the room spins like a nightmare merry-go-round that I can’t escape. A dim LED light in a dark room can pierce my skull and feel like I’m staring directly into the sun at noon — even with my eyes shut. It can feel like lightning flashing, and every flash feels like a large stone pelting my head.
The tiniest sound is like a thunder that shakes the ground. My ears ring loudly — a cacophony of high pitched squeals driving me mad — completely inescapable. My own breath feels like giant crashing waves drowning me. My own heartbeat like an echoing thunder rattling me from my core, and the tiniest movement seems to stir all of these symptoms up, making them all swarm me like a hive full of angry bees stinging at the same time.
I wish it ended there, and lately, every time it strikes, I pray that it will — but sadly, these waking nightmares have worsened in recent years. It started out as a minor twitch here and there in my arms or my legs — usually on my right side, but a couple of years ago, while watching a movie with my wife I started laughing with no reason. My wife looked at me like I was crazy, and then my eyes started blinking rapidly. That’s when she knew there was something very wrong.
And that’s when my perception of everything gets really muddy. I vaguely remember her voice — distant and echoing as if she were far away in a long tunnel full of water. In reality she was a few feet away on the phone with emergency services.
The next thing I remember is a blur of paramedics stomping around, tracers of light flashing in my eyes. Hands gripped me, but I remember it as if my whole body was wrapped in pillows and I could only barely sense contact with things. A loud voice asked if I could get up. I couldn’t. My limbs were shaking uncontrollably. I felt like a fish out of water, flopping around, though my wife assures me it wasn’t like that. It felt to me like I imagine a seizure would feel — uncontrollable shaking. My arms and legs twitched. Muscles in my back spasmed painfully.
I have distant memories in brief flashes — fear as I was being carted out the door. Where is my wife? What’s happening? A vague awareness of being inside an ambulance. Suddenly inside a hospital, trying to wave and smile at my wife… trying to assure her that I was OK. The fear had left, and somehow, even though I was still helplessly shaking and I had very little control of anything, I felt a sense of peace.
Very soon after, we were on an airplane on our way to visit specialists at an HHT clinic. There are a handful of specialty treatment centers scattered across the United States (and around the world). Outside those clinics, meeting a medical professional who has even heard of HHT is rare. Usually, I have to tell doctors what it is, what to look out for, which drugs are dangerous to me, and so on.
Inside the HHT clinics there are doctors who treat HHT patients all the time. They know the disease, and some of them are even interested because it effects somebody they know and love. One in 5,000 people have HHT.
Even among HHT patients, my case is rare. It’s fairly common for HHT patients to suffer migraines. I suffer from a less common type called hemiplegic migraine, which causes paralysis which typically effects the right side of my body more than the left. I experience bouts of fleeting consciousness and what I can only describe as something like a coma, where I have absolutely no control over my body, but I’m vaguely aware of my surroundings.
At the clinic we discovered that there is a problem with my lungs which may be linked to the migraine attacks. HHT can cause tiny problems with missing capillaries, but in areas like the heart, brain, and spinal cord, it can also cause larger blood vessel deformities called arteriovenous malformation (AVM). I have relatives who have needed brain surgery to treat cerebral AVMs.
I have spent quite a lot of my life confined to beds and couches, trapped by migraines, blood loss, and muscle weakness. I’m a computer programmer by trade, perhaps in part because I’ve spent months at a time unable to do anything else but read books or work on a computer. I had time to practice and develop skills that don’t require a lot of physical activity. The upside: Computer skills pay well.
But that’s not the only upside, and that’s not what I’m writing about today. Today, I’m writing about compassion. I have a very deep, intimate experience of pain, suffering, and general hardship. That sounds like a bad thing, but what it gives me is a unique perspective about the pain and suffering of other people.
It deepens my sense of compassion.
It is my understanding of pain that drives me to help other people who are suffering. Because I know what it’s like to feel helpless, I’m motivated to help when help is needed.
When I decided to be a co-founder of Parallel Drive, my wife and I discussed the purpose of the company. Of course we wanted it to make money, but money is only a good motivator when you don’t have enough. The moment you have enough, a little more doesn’t make that big a difference.
In order to really compete, to stay motivated and focused when we’d rather be on a beach somewhere, we wanted to create a company that would improve the world we live in. We wanted to help people who couldn’t help themselves.
Everybody needs help from time to time, and the people who are most vulnerable and most at risk are the people who have nothing — not even a safe place to sleep.
To us, the name “Parallel Drive” means that we’re driven to create something of value that people will love, but we’re also driven to give something back — to improve the world in a deeper sense. One of the first things we decided to do early on is to help end homelessness.
That goal gives us something more concrete to think about than some arbitrary thing like “I want to earn a million dollars.” A goal like that leads to more questions like “why?” and “what will we do with it?”
It feels good to do good.
A goal like “end homelessness” is a worthy goal all by itself. It benefits everybody. Fewer suffering people on the streets. More productive members of society boosting the economy. A cleaner, safer community for all. It’s even selfish in a way. It feels good to do good.
I believe that compassion is one of the most important things a person can learn, understand, and cultivate. Our strength as a species is largely a result of our cooperation, and our desire to cooperate stems from a mutual understanding of each other’s needs. Alone, our ability to accomplish great things is limited.
Together we can accomplish
virtually anything we can imagine.
Everybody has a number of challenges that you don’t see when you look at them. The key to understanding is to realize you’re only seeing the tip of the iceberg all the time. If you knew the full weight of the burdens that the people around you carry, you might treat them very differently.
But always remember, your challenges shape your character. They can be a source of understanding and compassion, or a source of frustration and misery. The difference is how you chose to think about it.
Your challenges may be out of your control, but how you handle it is entirely up to you.
“It is not who I am.”
I don’t particularly identify as an HHT patient unless I’m actually in a hospital being treated for it. Luckily, most days, I’m not in the hospital being treated. After years of fine-tuning medications and doses, most days, I don’t suffer terrible, debilitating migraines. If you met me in a coffee shop or at a conference, you wouldn’t have the slightest hint that there’s anything particularly different about me (except maybe my hair).
The Power of Technology
While confined to beds, I have made music downloaded by millions of people, written software with millions of active users, and even made lifelong friends on the other side of the planet whom I still communicate with on a regular basis.
What nature took away from me, technology gave back with interest, and I’m not alone. Allow me to introduce you to Scott Devine.
Scott is a professional bass player who’s doctors told him that his career as a bass player was over due to a neurological disease called focal dystonia. Neurons misfire and cause involuntary muscle contractions or twisting.
Unfortunately, Scott’s hands were effected by the disease, which disrupted his ability to do what he loves for a living. After traveling Europe and visiting with a lot of specialists, one doctor mentioned a violin player who was able to play wearing gloves. Scott tried it out and was able to play again.
But what’s really interesting about this story is what Scott decided to do in response to this condition: He went online and started a site called Scott’s Bass Lessons. He decided that if he couldn’t gig for a living, he wanted to pass on what he’s learned from years of lessons, practice, and experience.
He pulled out the cameras and took YouTube by storm. He’s one of the most popular bass teachers online today — and none of it would have happened if he didn’t have focal dystonia.
Scott set a great example & inspired me
to create EricElliottJS.com
Stephen Hawking needs no introduction. He may be the world’s most famous living physicist. He was diagnosed with ALS at the age of 21 during his cosmology studies at the University of Cambridge. He has admitted that he wasn’t a very motivated student at the time, but as he gradually lost control of his muscles, science became his escape.
The first time I read A Brief History of Time I was confined to a couch, barely able to move and turn the pages. It struck me that unlike me, Stephen Hawking never gets a break from ALS, yet here is a man who is quite clearly capable of amazing things. This is the guy who taught us about the Big Bang. The guy who taught us the significance of black holes, and gave us deep insights about the origins of everything.
He did most of his best work in a wheelchair, almost completely unable to move. In my mind, the word “disabled” does not apply to Stephen Hawking.
Technology has the ability to
empower vulnerable people,
open up possibilities,
and transform lives.
The Compassion Challenge
As we progress over the next 25 years, we’re going to enter into an age where technology is ubiquitous, even in the developing world — An age where, for better or worse, computers will be everywhere.
Programming is the new literacy, and as more people learn to code, and learn how to build high-tech devices, humanity will face our greatest challenges, but we’ll be assisted by technology we are only beginning to imagine.
As you go out and build the future, ask yourself:
How can I make somebody else’s life better
with the work I am doing today?
He spends most of his time in the San Francisco Bay Area with the most beautiful woman in the world.