American (Healthcare) Horror Story *UPDATED*
Around 5 months ago I had a smile on my face. The smile was hope. There was hope that after nearly two years of struggling, we had found an answer.
I found answers, but none of them were the one that I was looking for.
Life happens. It happened to me two years ago. I was in better shape, more active, and more healthy than ever in my life. Then things started to change. My “quality of life”, was being seriously battered day in and day out. I wasn’t one for doctors, appointments, insurance ($260/month), and the like…but I finally decided something had to be done. I was determined to find an answer in this scary healthcare maze.
Nearly a hundred appointments later with countless doctors, some who told me I was just imagining things ($300), and some who fought for me ($600)…after diets, supplements ($150), exercises, and more…after handfuls of cringeworthy, unusual, and disheartening exams and procedures ($15,000)…we had found an answer. After the final and worst of the tests ($450), one that you could call soul-shatteringly unpleasant (yeah, that bad)…the problem showed itself to be, very much, real.
The good news, was that it could be “fixed”. A massive abdominal surgery ($55,000), something I never thought I’d experience, was the answer we were looking for. There was a relatively low mortality rate, and a 5% recurrence rate.
I liked my odds, and hated my “quality of life”.
I would (eventually) be sliced down the middle. They would cut straight through everything from my belly button to my tail bone. Then they would staple lots of things to lots of places. Like an angsty teenager hanging posters on their walls. They would use hundreds of staples to put me back together.
“That will be $1,100. Cash or credit?”
The lights seem entirely too bright, and the line of payment desks entirely too “let’s get down to business”. I was walked back into a curtained off area, and told to strip down. I know this part all too well these days…
And to think, two years ago I blushed at the thought of taking off my shirt for a breathing exam.
“I’m Dr. Such and Such, this is Nurse What’s Her Name, and that’s Some Guy, he’ll be making sure you keep breathing.”
“You’re making my day with these big, juicy, veins”.
Again, all too familiar. People can’t seem to wrap their head around someone relatively young and healthy going through this, I guess I can’t either.
“We need blood tests.”
“No, we don’t.”
“Yes, we do.”
The lights are blinding now. The noises grow louder and louder until their disagreement turns into a din of meaningless echoing sound.
“Sorry about that honey! I guess we aren’t going to do the blood tests after all, the Doctor doesn’t think it’s that necessary”.
I imagine this is what a dog feels like at the vet. Who are these people? What are they saying? Why can’t I speak? My head is lolling back and forth to see this, that, and the other thing being placed, inserted, and adjusted all over.
My parents. They look nervous.
Dad says she’s a good surgeon, and it will be fine. I believe him, but the tears building up in my Mom’s eyes tell me otherwise. I wrestle the tears in my eyes and the weight in my chest, I tell it all to be sensible. I don’t want to make it worse for Mom. I look to Dad for strength.
Someone is missing. I wish frantically for her hand. To see her eyes, and that smile, looking down at me.
It’s time. I have to call her.
She answers right away, eager to hear what’s happening, and to tell me it’ll all be ok. I can’t speak. You know when you’re so close to breaking down, that if even a small whisper comes out…the flood gates will open? She knew. She knew I was terrified. She didn’t need me to say anything. She made me smile. She always does.
I saved it all for the last second. One last exasperated “I love you” and the phone was pulled from my hands. One last look back towards my parents as I rolled away.
“Ok, it’s happening. This is happening.”
I tried to use my mind to rationalize and justify what was about to happen to my body. No use. Too late for that. Dad said to take deep breaths. As deep as I could, and as fast as I could, that way I’d be asleep faster. I trust him.
The final room is everything you’d expect it to be, except bright. This one was dim, and felt somber. Everyone was very quiet and focused. They rolled me in, smiled, and said it’s going to be fine. They put the breathing mask on me. My mind was in a full panic now. Deep, fast breaths were all too easy. I raced towards unconsciousness while desperately repeating one phrase over and over again.
“I hope I see them again.”
I was out.
I wake up.
The surgery was a success, but it was worse than they’d imagined. They had to make it a full open surgery. I knew that wasn’t good. More pain, more scars, more recovery time.
The next 5 days in the hospital were hell. The next month wouldn’t be much better. The pain brought me to my knees. Thank goodness for Dilaudid ($12,000). It was ok though, because it was all going to be “worth it”.
“Worth it” never came.
The problems came right back once I recovered. The only remaining option? A very specific and rare type of physical therapy, that can only be done by one practitioner in the state. My doctor wrote a letter to the insurance and told them that this was my only hope. I showed up for my appointment.
“The insurance isn’t approving the visit. Do you want to pay cash? ($200 per session)”.
I don’t. My doctor is angry. She tells me she is quitting her practice in February. It seems she’s tired of being a part of this system.
The laundromat-ish one I had now thrown myself into on a never ending full-spin cycle.
She declares our mission, “Fixed by February”. I can get behind that.
We need to do the soul-shatteringly unpleasant test one more time though. To confirm that the staples, super glue, lassos, and rubber bands holding me together had failed. Ok.
After going through a very not fun prep process, I showed up yesterday morning.
“The insurance isn’t approving this. Do you want to pay cash ($450)?”
After seeing the disappointed look on my face, the receptionist seems sincerely sorry, but also frightened. I guess this is the part where most people yell at her.
“No, but thank you again for all of your help. Have a nice day.”
So here we are, at the end of the road (imagine Boyz II Men playing to amp up the drama). Two years later, and no answer. The year is almost up (insurance goes up to $620 per month next year). February is almost here (Doctor stops practicing).
Aside from being whiney, there is (believe it or not), a reason for this story. It’s the lessons I’ve learned from going through this thing that I really want to share.
Appreciate Your Health
You might say you do, but do you genuinely appreciate it? Think of it like appreciating a person. Saying “I appreciate you” means little, showing that appreciation means everything. Don’t think of your next workout as a way to look good, the next healthy meal you eat as a diet, or the next time you go to bed early as boring. Think of those as thanking your body for doing its thing.
Just like a person can be taken from you in the blink of an eye, your health can too. We don’t get to choose those things often, so why not control what you can and show a bit more appreciation to your body?
And even when something dumb does happen, remember that you still have many gifts that others would cherish.
Those don’t go away. Not unless you allow them to in your mind. You’re alive, right? Boom. Gifted.
Be Kind To Others
Very few people know the extent of the whacky, dumb, health stuff I’ve been through. You probably wouldn’t guess that I’m going through it. But I am. And so are many others, many with far, far, far worse things than me.
How are you supposed to know if someone is going through something like that? You aren’t. That’s the point. Just assume they are. Assume that we all are fighting battles internally and externally, and the last thing we need is to take it out on each other.
That’s the social and relational equivalent of M.A.D. (mutually assured destruction).
Smile. Breathe. Open doors. Be generous with people’s intentions. Say thank you. And for goodness sake drive a little nicer.
Hint: pretend everyone on the road is your Grandmother.
Choose Your Response
I could have thrown a fit today at that medical office. I could have told the girl she made a mistake. I could have told her that I wasn’t taking no for an answer. That they should have called me and told me it wasn’t approved.
Why? What use would that be? Do you think she doesn’t hear that every day from dozens of people red in the face they’re so angry with her?
Recognize that your frustration, is yours.
It’s unlikely that the person who happens to be in front of you at that moment is the real cause of it. She’s doing her best within a system that is, well…broken.
There’s an interesting threshold at which point people going through an incredible amount seem to gain a graciousness that transcends being petty.
Perhaps, it’s because they’ve given up on the notion that life is “fair”, and that things “ought to work in their favor”.
This isn’t just for strangers. How often do we take our frustration with life out on the people who love us the most?
What if we stopped thrashing about, and just let them love us while life is happening? Not just in the in-between times when we realize how important they are.
Don’t Fear Your Real
I have big self-image issues. I always have. My adolescence led me into some real jacked up notions of worth, value, beauty, success, and love.
I struggle every day with how I choose to view all of these things happening. Is it weakness? Is it ugliness? Both?
Because of the people who love me, that I’m so lucky to have in my life, I’m slowly learning that it isn’t either of those things. It’s simply “real”.
I didn’t choose any of this stupid stuff happening, and I’m doing my best to sort it out. They admire that. They don’t fault me, or think I’m defective in any way.
Here’s the kicker though…they can love me, and my “real”, as much as they want, but it won’t be enough.
I have to choose (yes, it’s a choice) to view my own “flaws and defects” as a small part of what makes me real right now, and to be OK with that.
I don’t have to love it, I can be sad about it, but I cannot give way to hating.
If we hate our own real, we are telling others to hate theirs.
That’s my justification. That’s how I plan on shifting the narrative. Every time I belittle myself, I am unconsciously telling the people I love that they should do the same. The thought of them doing that makes me sick to my stomach. So I’m going to try to stop.
So there it is. A silver lining. Hope.
The good thing about this hope is that it doesn’t rely on a broken system, a cure, or any of that stuff. Just me, the people that I love, and the way I choose to respond to life happening.
That’s something I can get behind.
*UPDATE — 1/24/17*
I come bearing some not so fun news, my friends.
I was finally able to get that “soul-shatteringly unpleasant” test again.
I had the test done just before traveling to (gorgeous) Banff, Alberta for an industry conference (where I am writing this update currently). I was anxious to hear the results, but tried to push the whole thing out of my mind. This is an important conference for our mission at EXP, I needed to be focused.
Bad news always seems to come at the worst of times, doesn’t it?
I was set to do a quick presentation, for all of the attendees, who happen to be the most prominent folks in our industry (student travel). The presentation was on my trip to North Korea. It was set up to humorously introduce the trip, the lessons I learned, and then bring it altogether to really show why what we do in this business matters so much to me.
About an hour before the presentation, my doctor called…
The original problem reoccured, and there is a new problem. This unlucky duo means that the only solution is to have an even bigger, much riskier, surgery.
Not to be cliche, but my heart, seriously, sank to the pit of my stomach.
She asked me when I would have time for the operation. Time? I’m home for all of around 5 out of the next 40 days, and beyond that, my schedule will be like some out of control bouncy ball in a small room. Meh, at least that’s what it feels like.
That, was that.
I texted my fiancé. We were both floored.
I found my way to a back table at the session I had to attend, and found myself hunched over, compacted, feeling like I had just had the shit kicked out of me. How could I present like this?
She told me she knew I could do it, like always. I couldn’t believe it in that moment though.
I argued with myself for the next 30 minutes:
“Don’t you dare bail on this.”
“Don’t present. Please. Just don’t do it.”
“They won’t blame you, just say something came up.”
“You don’t do excuses. You have to do this.”
I had to do it. I thought of our team, and how important it was that I spread the word about what we are trying to accomplish together. I thought of the regret I would feel, knowing that I missed a chance to reach even one person with that message. But how the hell could I break this funk?
Then something popped into my mind, as often does, from my childhood.
“Feelings follow actions, Jacob.”
Something my Mom drilled into our minds. I had to change my actions, if I had any hope of changing my feelings. I immediately un-crumpled myself, grabbed a cup of coffee, smiled at someone, took a deep breath, and said to myself something like this:
“This is happening, because it must. Your message is real. The only thing that can mess up true meaning, is overthinking. Get up there, the rest will take care of itself.”
I walked up to the stage. I held the microphone. I jumped off the cliff.
At first, words were just coming out of me. It was auto-pilot. Then I realized someone was smiling, and another person had laughed, in fact, quite a few did.
Turns out, it was one of my favorite presentations I’ve done…second only to delivering the best man speech at my Brother’s wedding.
And, thanks to the wonderful family of SYTA…my spirits were lifted in a way I couldn’t have imagined, and that I needed so desperately.
So many kind people told me how the heart of our message was so clear, and how they could feel the raw belief that we have in travel as a means for change. If only those people could know how much those words meant. How much I needed the smiles, nods, laughter, and those poignant silences during the presentation.
I last left this story off with a silver lining, and here it seems, I’ve been lucky enough…to find another one.
Thank you again, to all of the people who continue to lift me up throughout this crazy stupid process.