A Book and its Cover

A Book and its Cover

[6 minute read]

I thought a lot about what to put on the cover of this book. I didn’t want something bland. That doesn’t fit the message or tone. I didn’t want a big picture of myself. That seemed silly and self-important. I don’t have that kind of name (or face) recognition. Besides, this isn’t about me, it’s about the things we share in our experience of chronic illness. I could have chosen a medical image, but that would emphasize “sickness” — and my book is about how to choose life, even in the face of an awful diagnosis.

It had to be something personal, because I don’t just study chronic illness, I live it: both with a diagnosis and as a longtime caregiver.

And that led me to jumping out of perfectly good airplanes.

It’s overwhelming and terrifying when you get a diagnosis you’ll have to navigate for the rest of your life.

The moment I was diagnosed with multiple sclerosis is burned into my memory. I remember the wash of barely controlled emotions across my neurologist’s face as he broke the news. I remember every sight and sound of that experience. I remember the confusing swirl of tumbling thoughts and emotions as I struggled to parse this news (especially because MS had already been ruled out for my case). I even remember the sharp, antiseptic smell of the office. Trauma does that.

I remember that I felt like I was falling. My foundation crumbled. My life was instantly uncertain as it had never been. I felt small and out of control. I didn’t have much experience feeling that way. I wasn’t prepared.

Skydiving was an apt metaphor for that moment, and many other moments since, when I’ve been certain MS would win.

There’s an instant when you stand in the open doorway of a plane where, no matter how many times you’ve done it, your body wants to rebel. One step is, after all, unnatural when you’re three miles above the world. It can be challenging to will yourself into that step.

That’s where the skydiving metaphor is again apt: gravity is bigger than you. The wind is bigger than you. If you struggle and fight against gravity and wind, you will fail. If you’re stiff and unbalanced, you will spin out of control.

At the very moment all your body’s threat responses are screaming at 11, you must relax into it. You must become aware and focused. Your life depends on it. You have to understand that your small motions can be used with these forces to influence the outcome.

Influence. Not control…never control.

You must shift your mindset to work with these forces to accomplish your goal of a safe landing. It’s about acceptance and empowerment, never resignation.

In the image, I’m small and alone, framed against a big, wide world. I like that. It’s how we feel much of the time. Chronic illness gets isolating. We spend a lot of time as distant observers of the life others get to lead.

In the image, I’m alone, but I’m also surrounded by expansive possibility. I could literally go in any direction. Even though I’m “sick,” I can still exercise my choice. I just have to learn how to work with those overwhelming, scary forces.

I like that I’m unrecognizable, unless you look very closely. We spend a lot of our time being misunderstood. Others don’t see us clearly behind the label.

We also spend a lot of our time hiding the full extent of what we’re facing. Why? Because we don’t want to be seen as weak, whiney, or depressing. Because we’re tired of explaining and not being understood or believed. Because we really don’t want to talk about it, either.

That cover is doing a lot of metaphorical heavy lifting about the experience of negotiating life with a chronic diagnosis. Skydiving is a great metaphor for the mindset shift that research demonstrates actually works. But that image is more personally relevant, too.

After you live with a chronic health condition for a while, you can come to see it as a long, depressing process of saying goodbye to the things you love about life. One by one, for practical reasons that seem harmless in each moment, you start saying “no” to life’s experiences.

You do this because they’re just too damn much work. They’re exhausting. Painful. Awkward. You name it. And you get so used to saying “no” that you don’t get around to saying “yes” again…or life moved on without you and you just stopped getting asked.

Little by little, the things you love about your life are things that used to be in your life. All that emptiness gets filled up with pain, exhaustion, fear, disconnection, and a laundry list of things we don’t want to face and others don’t want to share.

You don’t recognize your life anymore. It’s certainly not something you want. But getting back to a good life seems so distant it’s impossible.

I didn’t notice this process for a good while after I was diagnosed, but my tween son did. His none too gentle reminder prodded me to think about what I’d given up because I had grown unsure of my body’s abilities.

The one thing that stood out immediately was jumping out of planes. I had done it and loved it, but it was one of those things that got lost in the press of life and illness.

We all have those loved experiences that we’ve said “goodbye” to. Things we think we’ll never see again. Those losses, small and large, pile up in our lives. The losses are suffocating.

Yet we can reclaim much that we’ve lost. Maybe not in exactly the same way, but in ways that increase and affirm us.

Ultimately, that’s what this cover represents: something I valued and gave up, but found a way to reclaim.

I had to do it differently. Most of the time, I can’t feel much of my legs below my knees. I had to learn how to land the chute without feeling my legs. That meant I had to learn to focus on the pressure of landing I did feel at my knees.

I practiced and I figured it out. Chronic illness demands that we adapt. It demands that we give up some of our illusory control. It demands that we savor each moment, because the next isn’t guaranteed.

Chronic illness places a big fork in the road of our lives: either we become more active, aware, and forgiving of ourselves and others, or we fall under the pull of its immense gravity. We sink into regret and recrimination.

When I skydive, I’m reminded of the life I’ve chosen. I am reminded that, no matter what we’ve had to say “goodbye” to because of our illnesses, there are new adventures to be found. New relationships. New challenges. New ways to express ourselves.

The cover reminds me that, even though a lifelong health challenge can be big and scary, there is still a world of possibilities and we get to choose.

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Still Sticking the Landing

Still Sticking the Landing

Multiple Sclerosis is a weird condition. It’s different for everyone who has it. Your own condition is even a different experience everyday. I’ve lived with it for a long time now (at least 16 years), and it’s still surprising.

It’s also not what most people expect. In the popular consciousness, it’s associated with impaired mobility. That is a common challenge we face. Most of the time, I get around pretty well (if a bit slower). I rarely use a cane. It’s typically only a problem when I get tired or overheated: then my balance deteriorates rapidly and I might sway around like I’m drunk. It draws some funny looks, because a look “normal,” but I can still function.

For me, the bellwether symptom is my left foot. On good days, I can feel my legs; but on bad days, they grow numb and tingly — beginning with that left foot. On really bad days, my legs just disappear below my knees.

So I’ve had to figure out accommodations. I never go barefoot…and I learned that lesson the hard way. A few years ago, unbeknownst to me, one of the kids had broken a glass dish in the kitchen. Sometime later, I traipsed through without thinking and soon was met with a hue and cry from my family.

I hadn’t even felt it when I’d stepped on a broken shard of glass, embedded it deep in my foot, and tracked bloody prints all over the house. Barefoot stopped then for me.

Not feeling your legs becomes inconvenient in surprising ways. I have to watch for solid, even footing when I walk. If it’s dark, I tend to scoot my feet along to compensate a bit for not being able to see obstructions. I absent-mindedly check my legs and feet for injuries I haven’t yet noticed.

And then there’s skydiving.

It was something I used to like to do, but (before I was even diagnosed) as my body started betraying me in small, unpredictable ways, I grew less confident and (not really noticing in the moment) began withdrawing from the world. Without a conscious decision, one day I noticed that I hadn’t even thought about going skydiving in a long time.

And this is something I really enjoy. So a couple of years ago, I decided that I’d get back to it. But I had a challenge: how do I land a chute when I can’t feel my legs?

I practiced jumping off moderately high boxes and learned to “feel” the landing by the pressure in my knees. And it worked!

A little creativity and accommodation, and I was able to reclaim an activity I loved.

In the larger scheme, it’s not a big deal. Jumping out of perfectly good airplanes isn’t necessary to my life, but it is a joyful, defiant, and life-affirming experience for me. It’s a way of exclaiming that this disease won’t get the best of me.

I’m not suggesting that everyone jump out of airplanes (although, if you think you’d like it, I’d highly recommend it). But I am suggesting that every single one of us have these small, joyful activities that add to our lives. These are the things that most easily slip away when we’re diagnosed with an illness — or facing some other extended stressors.

One by one, we let them go and soon we find that we’re no longer living. We’re just existing.

So my question to you is: what have you let slip? A sport, a game, a relationship, an activity… There’s something that used to be joyful in your life that you’ve let slide in the press of “important” demands. There’s something that you want to do that you keep putting off.

We get caught up in the things that seem urgent and we let these truly important things go. We are extraordinarily unkind to our future selves: these are the memories we’ll someday be grateful we made.

I am grateful to that past version of me who decided to reclaim the experience of skydiving — even when I can’t feel my legs. Some people are surprised I do this, but my response is that your limits are not where you think they are.

So do it. Take some time this week to make that future memory you’ll cherish.

#JustJump

But You Don’t Look Sick!

But You Don’t Look Sick!

Next time you’re in a crowd, look around. Odds are that every second person you see has a chronic diagnosis. And most of us will look like everyone else. You’d never peg us as “sick.” You’d think we were “normal” — and, in fact, we are, in two important ways: First, there are now as many people with a chronic health challenge as are not; so statistically, there are enough of us to be considered “normal.” Second, in every meaningful way, we’re no different from the “wells:” we share the same hopes, fears, dreams, and needs. Getting “sick” didn’t make us any less human. It didn’t change our goals, but it may have affected how we can attain them.

So why is our idea of what it means to be “sick” so different from the reality millions of us live? Because we’re generalizing from the wrong experience.

Most of us are born reasonably “well.” Our health was something we took for granted. It faded into the backgrounds of our lives and we didn’t notice it…until it wasn’t there.

We’ve all learned how to be “sick.” No one sat us down to teach us, but we’ve learned from experience. When we’re sick, we feel bad, laze around and complain, take our meds, and everyone lets us “hit pause” on our lives. We get a “time out” to get back to normal. We’re “excused” from work, school, and life.

Society gives us a break because it’s not our fault. Even though we’re not currently “pulling our weight,” others accept it’s out of our control. We’re not lazy, shifty, selfish, cursed, or sinful. We’re just “sick.” Everyone understands we’ll get better, make it up on the other side, and give others a pass when they need it.

But to earn that pass for being sick, we agree to do everything we can to get well again. We’re seeking the best medical help, following their advice, taking our meds, having procedures, attending therapies, and visibly cooperating with caregivers.

There’s one big catch: everything we learn about how to be “sick” presumes an acute medical condition: something short-term that we’ll be over soon. And that’s where it breaks down for chronic illness: there is no “other side.” Or, if there’s a chance of an other side, it’s not at all certain. Or, if we do return to something close to well, we live with the possibility of relapse.

Society only gives us two options: we’re “sick” or “well.” We’re definitely not well, but we’re also not sick in the ways people expect. That leaves everyone in an uncomfortable place where the rules we think we know don’t work. It’s frustrating. How do we react to the knowledge that someone’s “sick” when they won’t get “well?”

But we can’t live forever as “sick.” That’s discouraging and frustrating. We try to live as “normally” as we can, when we can, but that sends confusing signals to everyone. The “sick” role is one we all know. We also know it doesn’t “fit” our chronic cases. In reality, there’s a lot of space between the comfortably clean stereotypes of “well” and “sick.” There has to be a better way, but the socially approved “sick role” is just wrong. And worse, harmful.

We need another cultural category for “chronically ill,” one we can fill with a different set of expectations. The first step is that more of us tell our stories. The more people we all see just living our lives with a chronic condition, the more our misunderstandings of chronic illness get reformed.

Life doesn’t end with a chronic diagnosis. It may be that some aspects of our former lives must change, but it doesn’t change who we are or our humanity.

We may have to act in different ways to accommodate the demands of our health, but we don’t want to become “that sick person.” It needs to be acknowledged, but it can’t become our identity. A little bit of grace and conversation helps everyone get comfortable with the idea. The more we share our experiences (sick, well, and caregiver), the less we have to rely on filling in the banks with the things we’ve learned from acute illness that just don’t apply.

Independence!

Independence!

Today is the day Americans celebrate colonial independence, the beginning of a centuries-long experiment in representative democracy. But our desire for political self-determination stems from a much more basic human need: agency. We need to feel like we have some control over our own lives.

But half of us face silent challenges to our independence every day. Chronic illness doesn’t just confront us with some uncomfortable symptoms. It attacks our identity and our ability to effect personal control in our own lives. And it does this in three ways:

1. Real physical limitations. Often these can’t be seen from the outside: pain, fatigue, and constant stress take their toll. We may not be able to accomplish our goals in the ways we otherwise could. We may have to rest more often. We may have to get ordinary things done through a grinding haze of pain. We may have to creatively re-imagine what we do. We may have to give up cherished activities. But we still need to find ways to get things done. And we need an environment that’s adaptable and inclusive.

2. Limitations due to loss of personal agency. It’s easy to get discouraged when everything is more difficult and there’s no relief in sight. We all want to think we’d never be the ones to give up. We dismiss others as “weak” when they do. But it’s just not that simple. Sometimes, giving up seems like the only option, but it doesn’t have to be forever. We can regroup and rebound. We are remarkably resilient. And others are facing challenges you can’t really know.

Our personal sense of agency is actually pretty fragile. Most of it is, after all, a necessary illusion we tell ourselves to keep trying. We need to believe we can accomplish more than we actually can — because sometimes that accomplishment really is possible, after all. Many of us have never had our sense of agency truly challenged. But a chronic health condition will do that. We can’t run from it. We have to find new ways to feel that ability to influence our world, even as evidence of our human failings stacks up in our experience.

3. Limitations from how others see us. “Sick” is an easy stereotype we use to fill in the blanks of our ignorance. If we know someone is “sick,” we can easily presume they’re helpless. But that’s not at all the case. We need to do things for ourselves and for others. We need to contribute to our world. That doesn’t change. But we’re easily dismissed and, perhaps worse, others stop asking us to be involved or try to do things “for” us without first asking what we need. That’s humiliating and discouraging. It corrodes relationships and robs everyone of valuable contributions yet to be made.

The difference between “sick” and “well” is much smaller that we assume, but it is real and it must be accounted for. Living with a chronic diagnosis doesn’t make us any less human. Nor does it make us helpless or reduce our desire to contribute.

We all need that sense of “agency,” of personal control and the ability to have an effect on the world. So this Independence Day, celebrate by acknowledging a shared need that binds our humanity: we all need to feel like we’ve made a difference. Make a difference for someone else — and, just as important, let someone else make a difference for you.

The Pause before the Fear

The Pause before the Fear

We live in a fearful world. Stop for a minute and think about how you experience “fear.” Remember a time when you were afraid. Maybe you were being attacked by a bloodthirsty, pop culture pirate? Probably not (yeah, that’s me with the sword).

I’ve had many of those fearful moments:

  • that little hitch right before stepping in front of an audience, even though I’ve done it thousands of times
  • the moment when I decided to leave the safest job in the world, as an academic climbing the tenure track, for the risky life of an entrepreneur
  • when I’m about to close a mission critical deal that my company depends on
  • the split second before that speeding car t-boned me and rolled me down the highway
  • looking out the open door of an airplane, three miles up, as I contemplate that first step
  • staring down the barrel of a loaded gun
  • watching my wife wheeled away for a desperate, last minute surgery
  • holding my young son, spurting blood from an injury, as we made a mad dash for the ER
  • the moments when, without warning, my legs stop working and I know I’m headed for the ground

Those flashbulb memories are implanted in my head, as vivid now as when they occurred. We all carry our own. They’re a consequence of life. They’re stamped into our brains with a powerful rush of hormones and emotions.

We think of “fear” as our bodily reaction:

  • breathing becomes fast and shallow
  • heart beats faster and blood pressure rises
  • sweating begins
  • blood sugar rises
  • immune system repressed
  • body flushed with hormones (adrenaline, noradrenaline, cortisol)
  • emotions heightened
  • attention narrowed to the stimulus
  • higher-level cognition short circuited
  • strong urge to do something…anything!

Physical and emotional arousal is managed by our primal brains (the brainstem and the limbic system). All of these things happen before you’re even aware of them and have the chance to decide that you are, indeed, “afraid.” Your brain and body are already responding before your mind joins the conversation.

We’re always at some level of arousal when we’re awake, but the strongest arousal response is an overwhelming motivation to drop everything else, pay attention, and act now! But this is not “fear.” It’s the upper limit of physical and emotional “arousal.” Arousal usually happens for four reasons:

  1. New information is salient: it stands out from the background.
  2. New information is surprising: it violates what we expected.
  3. A stimulus looks like a known threat: it’s similar to a pattern we’ve already labeled as “threatening.”
  4. We are somehow pushed to the edge of our capacities: we’re near (or past) what we feel we’re able to deliver in that moment.

Our primal brains only know one response: amp up all systemsjust in case it’s an immediate threat to life or limb! But we’ve created a much more complex environment than our ancestors inhabited and that same arousal response is triggered in less than helpful ways. We try to make do, and our minds must learn to interpret that same response in many ways.

For our bodies and brains, arousal is an all-purpose tool to get us ready for action. It may or may not be threatening, immediate, or even an event we can do something about. Our systems tend to err on the side of safety: for simple, immediate, occasional tasks, it’s better to be too amped up than not enough.

When arousal is triggered, it’s not always negative or an emergency. It’s not always fear or anxiety. It could be excitement or a joyous surprise. It may even be a real threat, but not of the immediate, dangerous kind that our extreme arousal response can prepare us for.

You don’t want to live without fear. You want to live with appropriate fear.

The next time you feel “fear,” use the pause. In the split second before we realize we fear anything, there’s a pause and a decision. It usually goes unnoticed. Train yourself to notice. In that expectant moment, we’re perched on an emotional knife-edge and could go either way. Maybe you are being charged by a bloodthirsty pirate or a saber-toothed tiger, so get scared and run! Probably not.

I don’t care how many times I do it, when I stand at the open door of an airplane, there’s a biochemical rush that explodes in my brain. There’s real risk (it’s a long way down), but it’s not yet fear. This is the pause before the judgment. Learn to recognize it and understand that this isn’t fear — what comes after could be, but you get to make that decision. (And you can, with patience and practice.)

Recognize that you’re aroused for action, then take that beat to figure out why (remember those four reasons). You’re not necessarily afraid or anxious, just aroused. Recognizing that response for what it is — a primitive emotional and physical preparation for intense action in the face of an immediate threat — is the first step toward managing and directing those fears that don’t quite fit our modern lives.

Daddy is Sick

Daddy is Sick

I remember the first time my children looked disappointed in me. It’s a look you never want to see. You know that, someday, they’ll figure out you’re just human, but you’re never ready for it when it comes — especially when it happens far too young.

It was a hot, summer day. They were badgering me to go out with them on one of their childhood adventures. But I hadn’t had a pain-free day in weeks. I hadn’t slept well for just about as long. I was at the end of my tether. I couldn’t see a way to muster the resources for that much effort.

And I snapped, “no!”

Their hurt was instant. I wished for nothing more than to take it back. I wanted to accompany them — to build some new, silly memory together. I wanted to feel like I could. But my body had betrayed me.

I will never forget their little crestfallen faces looking up at me. The quiver of their lips, a bit of extra, glistening moisture in those wide, child eyes I adored. They were crushed, and I was responsible for that. I was crushed, too: angry, frustrated, humiliated that I couldn’t find the strength to do an ordinary Dad thing that I wanted to do.

Childhood passes so quickly. In a blink, they’re already well toward the people they will be. We have to take every precious opportunity to be with them as they are becoming, before those chances are gone. And when your health gets in the way, they don’t really understand.

All they can see is the smile you’ve pasted on: “I’m fine.” (You’re always “fine.”) They don’t really want to hear what’s going on inside, and you don’t want to burden them or dwell on it, yourself. They probably wouldn’t believe you, because sometimes you do seem just fine. And they definitely don’t need the downer.

You always want to be their hero.

I wish I could say it never happened again, but it did. The people you most love must also pay the freight of your illness. The people you most want to protect are the least sheltered from the fallout. It becomes easy to withdraw because, after all, the only thing you feel you can do is protect them from another disappointment. But after one too many “no’s,” you’re afraid they just may quit asking.

You’re overloaded. Overwhelmed. You just need a day or two to recuperate and rebuild your strength, but your body won’t let you. We don’t want to admit we’re overwhelmed. Yeah, we know everyone has their challenges and we don’t want to complain. If you just ignore it — try a little harder — you’ve got to be able to muscle through it. You know that’s not true, but it’s easy to believe. It’s easy for the guilt and disappointment to drown out everything you love.

We always want to be the person who’s there to support those we love. That’s what Dads do. We’re never needful. We never want to admit that, sometimes, we need supporting, too. We must be strong, but we have to realize that the display of strength doesn’t have much to do with actual strength.

What lesson are we trying to pass on? That real strength is in perseverance. Life is brutal. Unfair. It knocks us down in surprising ways. And we get back up, even when we’re not sure how…because life is also joyful.

So everyday I keep trying. Everyday, I try to show love and engagement with the world. Everyday, I hope they’ll see me — the man who’s committed to my children. Everyday, I fear I won’t have the opportunity to show what I feel and that they will stop trying to see.

On this Father’s Day, I just want to tell my children that I love them. I’m proud of them. I’m thankful they are mine. And I’m still trying. Some days, this illness gets the best of me. But I’m always in here and I’m always trying. I’m not always the Dad I hoped I would be, but I’m always trying.

And I want to congratulate all those other Dads who are silently still trying in the face of their health conditions. We don’t talk about it. We don’t want to admit “weakness,” so it’s easy for us to think we’re alone. But there are millions of us and we are legion. Fathering in the face of health challenges is a conversation we need to have, but studiously avoid.

It’s OK to ask for help. Real menreal Dads — are just real humans, too. Sometimes, we need help. Many times, we can give that help, despite our illnesses. But most of all, we’re still trying for those we love — and that’s what makes all of you Fathers to be proud of.

Remember Those in Front of Us, Too.

Remember Those in Front of Us, Too.

Maybe they spent 6 months in a war zone. Maybe it was six tours. Maybe it was a full career of military service. During the Civil War, 16.5% of Union personnel were killed within the theater of action and 12.7% were injured. Through our 20th Century wars, about 2.7% were killed and 4.7% wounded.

Thankfully, warfare doesn’t outright kill American military personnel at the rates it used to: modern military tactics and technologies, as well as battlefield medicine, see to that. During American 21st century conflicts in Iraq, Afghanistan and elsewhere in pursuit of terrorist combatants, just 0.3% have been killed and 1.9% wounded.

What once would kill is now too often a condition that must be lived with forever. Today, more than 19.7% of living veterans carry a service-connected disability, and 5.7% of veterans have an official disability rating of 70% or more.  Those numbers are rising, and an uncounted number have not sought official disability status or have not been rated.

Many carry a life long burden of physical and mental illness: long term physical injury, depression & anxiety, traumatic brain injury (TBI), post-traumatic distress (PTSD), or tinnitus, among many other conditions.

The consequences of war are far more varied and long lasting than we once understood. It’s not just a medical condition obvious to others. Unlike those who have fallen, these are men and women all around us and they can still be helped with our support. They carry scars we can never see.

Those numbers make it easy for us to tune out, but each one is a real human life. And they’re people who we know, love, and care about. People who need our support because they pay a price everyday for answering a nation’s call to duty.

So on this Memorial Day, remember the fallen, but reach out a hand of support to your neighbor who still carries the consequences of war every day.

People Think I’m Lazy

People Think I’m Lazy

Oh, I don’t know that for certain. But it’s one of those beliefs people with chronic illness (especially the invisible kind) have to face. “Lazy” is right up there with “needy,” “attention-seeking,” “flakey,” and “liar.”

Fatigue is one of the major byproducts of living with most chronic health conditions. The reason is simple: your body is always working harder and you’re never quite comfortable enough to truly rest. Daily events are always more taxing: we have to work harder than a completely healthy person to do the same thing.

Every healthy person knows how they get tired and cranky without a good night’s sleep — or after a day or two of sniffles or a low-grade fever. We quickly get miserable and precious. But it’s qualitatively different when even your best sleep is never quite restorative — and you know that there’s little hope for the next night, or the next after that.

You can get very, very “tired,” but “tiredness” is not “fatigue” or “exhaustion.” Medically, these are different experiences you instantly recognize, if you’ve been there — but otherwise can’t. And once you do, it changes the calculus behind every decision you have to make.

You don’t want to complain. You don’t want to be seen as “different” or somehow “less.” You don’t want special consideration, even though you know that a completely “normal” activity will incur significant costs on the other side.

Others will try to understand, but it becomes frustrating for everyone. If you don’t look “sick,” then others will forget. You want them to forget, because you don’t want to be treated differently; but sometimes you need them to remember, because you know how quickly you can become depleted and how much you will later pay for it. Everyone in your circle is caught in this double bind with you. You feel guilty, but you also know how hard you’re trying.

Over the years, I’ve devised ways around it. I try to work at home as much as I can. Not because I particularly like it, but because, on bad days, getting around and out the door and across the city is draining. I have to use a lot of energy just to get someplace that I could otherwise use on getting things done.

On the days I do work out in the world, I try to stack up as many meetings as I can. Why? Because it efficiently uses those scarce resources that others don’t think twice about committing. We have to become more sensitive to how our bodies use their resources. We have to understand that, while healthy people can “push through” tiredness, the limits of fatigue are far more consequential and must be respected. We have to learn to truly work when we work and rest when we rest.

I can still work 14-hour days — and sometimes do, more than I’d like — but they’re not as productive as my 14-hour days used to be. They require me to become more mindful and purposeful to attain the productivity that once seemed effortless. And they exact a greater recovery cost on the other side.

The catch is that we want others to ignore this until we can’t — because we don’t want to face it, either. That seems pretty “convenient” to an outside observer, yet it can be frustrating and humiliating on this end of it.

But this isn’t about me. I’m willing to hold myself out there as an example because so many don’t feel like they can. Half of all Americans live with a chronic health condition. And even if “fatigue” isn’t part of the official diagnosis (like it is with MS), it’s still a fact of life for most of us.

The modern pace of life is tiring, under the best of circumstances. All of us are so busy putting a good face on it so others won’t judge us as lacking. And half of us have a medical condition that increases the (often unrecognized) challenge.

There are many things we can do to improve the ways we live with fatigue, but I’ll end with just one: all of us will function better if we focus on the task, not the time.

Business is obsessed with time: billable hours, hourly wages, showing up early, and staying late. For many jobs, those are surface measures more about showing that we’re working rather than really getting things done.

Monitor your attention and effort, not your time. Judge one another on the quality of contribution, not time spent in a seat. These are, on the one hand, simple changes in our perspective that would both help all of us get things done — and then release us from those business worries to live the rest of our lives with people we care about and activities that bring us joy and meaning. But, on the other hand, it’s a difficult shift because it goes against the norm and we too easily fall into these superficial judgments.

I’m fatigued most of the time. Maybe you are, too. Maybe it’s something you fear others discovering. It’s something we have to work around. You’re not lazy. Neither am I. But it’s something we need to acknowledge and address, together.

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Chronic Cow, LLC delivers science-backed, data-driven, individualized tools and technologies supporting those with chronic health conditions in living well.

Challenges Infographic

Challenges Infographic

Chronic Cow™ was built to solve your problems. Not the ones well-meaning loved ones and healthcare professionals think you’re facing. But the ones you really live that make the difference between a struggle and your life, lived well.

We know because we asked — and we live it, too.

Chronic Cow delivers training, support, and technology that helps you, your loved ones, and caregivers thrive with the challenges of chronic illness.

We help medical professionals better understand your real life needs.

We show you a better quality of life with practical tools and active support.

And our solutions are backed by real science and experience living with, and caring for, chronic conditions.

You Choose to Stay Broken

You Choose to Stay Broken

Sometimes, life just breaks you.

Life flips you such a monumental finger that, no matter how educated, prepared, capable, charming, connected — even pretty — you may be, you are suddenly so far out of your depth that you can’t even yet see it for what it is.

Some of you are nodding at this with hard-earned experience. The rest of you are at least a bit delusional because life hasn’t yet robbed you of the “illusion of invulnerability” many of us are privileged enough to carry long past our adolescence. Life hasn’t yet shown you that it can, and does, happen to any of us. You remain armored in the false conviction of your illusory control. I hope you get to keep it for a good, long while. (But please don’t condescend to those who life has taught a less fortunate lesson.)

Some event, out of your control, becomes completely overwhelming. Sometimes, it’s an obvious crisis, but other times, you won’t even recognize it until long after. You don’t have the tools to solve the problems it makes. In fact, the tools you’ve always relied on make it worse. You’re blindsided. Your capacity is completely outstripped by the demand of the challenges you confront.

It is beyond your frame of reference. You can’t even begin to figure a way out of it. Hell, you don’t even yet realize what you don’t know. That sort of crisis tends to strip away all the things in your life you cannot trust. It stripped everything from me.

My family and I had been through a string of pretty “normal” personal, professional, and health troubles. Individually, they ranged from annoying to downright scary. Together, they were just sort of exhausting. But then came “that thing” that blew up my life in slow motion. No one recognized it at the time because it happened inside my brain.

I’ve lived with Multiple Sclerosis for a long time now. MS is when your immune system becomes convinced your own myelin (the “insulation” around many of our nerve cells) is the enemy that must be destroyed. It is usually associated with motor difficulties, fatigue, numbness, and pain.

But MS is a capricious beast. It can strike anywhere in your brain and spinal cord. And since everything we do and everything we are gets processed through the bottleneck of our central nervous system, its effects can be surprising, variable, and all-encompassing.

I thought I had a good handle on my MS. I’d met each challenge it had thrown at me. But this time was different. This time, it was a massive right frontotemporal exacerbation.

What does that mean? Among other things, it deeply affected my emotions, cognitions, behaviors, and communication. For a guy who’s always made his way by analyzing the world and communicating those results, it was devastating. It’s pretty natural that a deep depression followed.

And, of course, it didn’t help that, through a healthcare snafu, it went unrecognized and unaddressed. All I knew was that everything was now vastly “different.” I knew something was deeply wrong, but I couldn’t explain what. No one around me understood. How could they?

When a massive crisis strikes, it’s easy to get caught up in saving face: desperately trying to show the world that nothing is wrong. “Move along, nothing to see here.” And, it turns out, I was pretty good at covering…for a while. Of course, face saving just leaves more time for the negative consequences to accumulate.

But when you don’t understand the problem, you can’t craft a way out. You can’t ask for the help you really need. And those around you get exhausted just trying to navigate the storm.

They don’t understand what the real problem is, either. From the outside, exhaustion looks like laziness, pain looks like anger, confusion looks like stupidity, overwhelm looks like victimhood, and all your efforts look like a string of failures. People come to see you as undependable and ineffective. Gradually, you are written off. Those closest to you see your worst and their disappointment is crushing.

When you’re truly broken, you don’t see it. We have a whole host of self defense mechanisms that hide that realization. When you finally do see it, it is overwhelming. And when you finally try to do something about it, things are now even worse and the tools you’ve always depended on aren’t right for this job. But you have to start somewhere.

For me, In the grips of that crisis, I turned to the only tools I had: science and entrepreneurship. Science to help me understand what was happening. Entrepreneurship because, once I was figuring it out, I realized that a lot of other people needed these tools, as well. They were my way of making meaning out of despair.

I’m not heroic. I’m not inspirational. I’m just trying to make the most good from the worst that has happened to me. So, here I am. Using my science. Building this company. Trying to do well by doing good. Trying to make something that will make a difference.

And the truth we don’t want to face in our hero-worshiping, up-by-your-bootstraps culture is that none of us walks away from broken by ourselves.

The truth is that it can get too familiar in all that brokenness. It can become so daunting just looking at how far you need to go. It can be terrifying trying to pick a path through the debris of a life you cherished so that you can break ground on a new spot with the deep, rich soil that will once again support growth. But no matter the odds and no matter how it looks, you get to choose whether you stay broken where you are.

It’s been a long, slow slog. I’ve had to learn how the think, emote, and behave differently. I’ve had to re-learn how to process social signals. I’ve had to learn that silence and pride, and face saving are the enemies. I’m still learning and experimenting every day. I suppose I always will.

What have I learned in rebuilding myself?

  1. Accept what you can’t control. No, really. Just accept it so that you can focus on those things you can influence — no matter how inconsequential they may seem.
  2. Embrace what you have. Use your tools and resources. If you have none, then build them. Learn something. Make new connections. Practice. Exerting what small amount of control you have left builds confidence and capability.
  3. More of the same won’t get you out. Different will. Accept that what you’ve done in the past is no longer suited to your new environment. Try things until something works.
  4. There is another side. It might not look like what you had or what you’ve always thought you wanted, but you can make it good. The future won’t turn out as you expected, anyway. You might as well appreciate each moment, find joy and meaning in the journey, and delight in the ephemeral results, as they come along.
  5. Pride is your enemy. Everyone likes a “winner,” but we’re all just making it up as we go along. Very quickly, you’ll learn who has the substance and kindness to be helpful. Those are the people you want to connect with. Those are the people you want to succeed for and help, in return.

That all seems pretty trite. We all know those things in the abstract, but they are the first we forget when we need them most. That’s one reason why broken can be so difficult. It locks us alone in that moment. So we must be reminded.

When we’re truly broken, all we can see is, “I can’t.” We forget that: if we believe we can, we might, but if we believe we can’t, we won’t. We forget that asking for help is part of what defines us as human.

Our world has become more capricious, contingent, and unpredictable. It is no use pining for a certainty that never really was. Sometimes, the world just grinds us up. No matter how grim it seems or how distant the possibility of success, the only real choice we have is whether or not we stay broken.