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What Pain Patients Can Learn from JFK

I’ve recently become kind of obsessed with the fact John F. Kennedy had health issues. Like major health issues. Like Addison’s disease, ulcers, colitis, and back pain issues, among others.

It’s one of the few things most people don’t seem to know about JFK. He was sick. Really sick. And he was often dealing with his health while running the country.

The Atlantic detailed some of Kennedy’s health issues in “The Medical Ordeals of JFK” back in 2013. They talked about how while JFK was in the White House he routinely saw an allergist, an endocrinologist, a gastroenterologist, an orthopedist and an urologist. JFK also regularly took amphetamines and had painkillers injected into his back.

In other words, he went through the same things a lot of us with chronic pain go through. Except, you know, he managed to run the Free World between steroid injections.

There’s a part of me that wishes he hadn’t hid his aliments. The article details how his campaign flat-out denied he had Addison’s disease. The day after his election, in response to a reporter’s question, JFK “declared himself in ‘excellent’ shape and dismissed the rumors of Addison’s disease as false.”

Personally, I had no idea that JFK struggled with so many health issues until I stumbled upon the information while researching chronic pain. And from what I can tell, most people in America don’t realize just how sick he was either.

I can’t help but wonder what he may have been able to do for the stigma associated with chronic illness if he had ever admitted to his aliments publicly though. Imagine if the stereotype of someone with chronic illness was JFK.  Sure, it’s a lot to live up to, but it’s better than what we face now, which is usually something along the lines of, “a lazy, druggie who probably brought it on themselves.”

And maybe he could have even helped people understand that cancer isn’t the only bad thing that can happen to you. And that sometimes, you don’t get better and you don’t die — you just stay sick.

But, there’s probably a good chance he would have never been elected if the American public knew he was seeing Max Jacobson, an émigré doctor from Germany who had made a reputation treating celebrities with “pep pills” (amphetamines).

The thing that really strikes me though is just how much JFK was able to accomplish despite his health. Most days, I’m in too much pain to drive to the grocery store, much less run for president.

From what I’ve read, it seems as though JKF was totally cool with popping as many pills as he needed to in order to keep going. As The Atlantic details, “[He didn’t] believe that the many medications he took would reduce his ability to work effectively; on the contrary, he saw them as ensuring his competence to deal with the demands of the office.”

In other words, he was all for medication if it meant he would be able to endure a press conference.

And I’m also guessing he was the type of sick person who had access to any and all medications that he thought would help him. Something most of us can only dream of.

There was definitely a point in my life when I would have loved taking hundreds of Norco each month so that I could have kept pace with my previous lifestyle. I mean, I probably wouldn’t have a liver anymore, but at least I’d still have my own apartment.

Even on my current doses, my main reason for taking drugs is so that I can do as much as possible. Sometimes that means a work trip to Arizona, and other times it means having the strength to sit up on the couch and type out a column.

So I can completely understand why JFK felt like he did about the pills. But I don’t think most people would.

Heck, the number one comment I get from anyone who finds out how many drugs I take on the daily is, “You need to get off all those medications.” I usually explain that if I “got off all those medications” then I also wouldn’t be able to get off the couch. 

I also assume that when JFK said he was in pain, at least one of the like 23 specialists he was seeing believed him and responded accordingly. Again, something most of us can only dream of.

He also probably had no issues paying for his medications or getting to doctors’ appointments. And I’m sure he was able to see the very best doctors in the country whenever he wanted.

Even knowing that he had all sorts of advantages as a sick person though, there’s still a huge part of me that feels really inadequate thinking about how much JFK got done. I mean, I have literally had to scale back every aspect of my life since getting sick. I quit my side job as a youth leader, which I loved with all my heart. I moved in with my mom. I started working from home. And I even stopped going to the mall as much as I used to.

For me, a big part of being sick has been losing so many of the things I love, and then figuring out how to cope with those losses.

But then, there’s another part of me that thinks of JFK and is kind of inspired. Maybe there is hope for me yet. Maybe I can still live in Brazil one day, or become a best-selling author, or heck, run for office just like JFK did. 

I just need to find that German doctor and get some of those “pep pills.”

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Figuring out what’s next with a long-term chronic illness

The thing about being Type A is that I’ve been trying to figure out the answer to “What’s next?” since I was 5.

Back then, I was vying for the accelerated reading groups — hoping it would lead to a good first grade teacher. That, of course, would put me on the right path through elementary school, which would then help me get the right classes in junior high. Those would inevitably lead to advanced courses in high school, which would help me get into a good college. And, of course, a good college is exactly what you need to get a good job and have a good life.

Like I said, I’m Type A.

Except, now that I’m sick, I hate “What’s next?”

Aside from the fact that this illness has destroyed all of my carefully laid plans, and made it impossible for me to even know what tomorrow will bring (much less my 30’s and 40’s), it has also made “What’s next?” take on a whole new meaning.

When you’re sick, “What’s next?” suddenly becomes “What are you doing to get better?”

Everyone from your best friend, to your boss, to the mailman feels like they’re entitled to know exactly what you’re doing to find a cure.

“Oh, so you went to the Mayo Clinic? And it didn’t work out? Well, what’s next?”

“Oh, you finally tried acupuncture and it was horrible? Well, what’s next?”

“Hmmm, so you aren’t willing to eat someone else’s healthy feces to get better? Well then, what’s next?” (True story).

It’s exhausting. And yes, I know most of the time, people probably mean well. But as the person who is actually sick, it sucks to hear “What’s next?” every day, when sometimes the only thing you actually know is next is another dose of hydrocodone in four hours.

I mean, I get it; our society has a really hard time grasping chronic illness. The idea that someone could be sick for the rest of their life doesn’t quite line up with the American Dream. Heck, I have a chronic illness and I still have a hard time accepting it.

There has to be something out there, something else to try that could lead to cure, right?

But now, nearly two years after waking up with excruciating rib pain that never goes away, I finally have to admit that I have no idea “What’s next?”

I woke up with obscene rib pain in February, 2013, and for the first year and half, I was all about whatever was next. I was constantly looking for new doctors, trying new drugs and visiting new hospitals.

But aside from getting the pain down to a more manageable level, nothing has really worked in the way that I, or anyone else in my life, had hoped.

So, for now, I’m relying on six different prescriptions, Alka-Seltzer Heartburn Relief Chews, and ibuprofen to get through each day. Beyond that, I’m at a loss.

I mean, I might end up trying the 3-week pain clinic at Mayo, but the waiting list is apparently so long that they sent me a letter in September telling me that they would call me in December. And I still have no idea how much it’s going to cost, if I’ll be able to get off work, or even if it’s worth trying. [Editor’s note: I’ve since found out that my insurance won’t cover the program, which is $35,000, so I won’t be able to do it].

There’s also the Cleveland Clinic, which is supposed to be like the Mayo Clinic. But the problem with that is it could end up being just like the Mayo Clinic.

I’ve also read about procedures where they can go in and cut the intercostal nerve, which some doctors think is the cause of all my problems. Something like that could be the miracle I’ve been searching for. But whenever I ask a doctor about it, they look at me like I’m crazy and stupid. Then again, maybe I’m finally at the point when crazy and stupid is my only option.

Or maybe I’ll just live out the rest of my life on opioids, praying my liver doesn’t give out before I do. And hoping that God really is out there and that maybe I will finally wake up pain-free one day.

I just don’t know right now.

What I do know is that I am still in pain. It does still suck. And I have no idea when or even if I’ll ever get better.

If that’s hard for you to grasp, think how hard it is for me to live it.

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My final words to the youth group.

Editor’s note: Today, Sunday Aug. 11, 2013, was my last Sunday as the youth leader at Crossroads of Faith United Methodist Church. Below is the letter I read to the youth for our final youth group.

Dear youth group,

I feel the need to start by telling you that I love you so much.

I know. I know. I tell you guys that all the time. I’m always blabbering on about how I love every single one of you. How I pray for all of you, all the time. How I love you all individually.

But the reason I say it all the time is because it’s true. It’s so, so true.

I love you all. Every single one of you.

I also want to tell you that I hate that I have to leave. I really, really hate it.

I ask God all the time, why he’s taking something I love so very much away from me. And sometimes, I question whether God is even there to hear my question.

I tell you that for two reasons.

One, so that you’ll know I seriously tried every single thing in my power to stay in this role. Seriously. I feel like I clawed at the edge of cliff, until, finally, my hand slipped off and I couldn’t hold on any longer.

The other reason I tell you that is so you’ll know that as you go through life, horrible, unexpected things will happen to you, and they will make you question your faith. They will make you question your beliefs. And they will make you question the very God you pray to.

And that’s OK. The questions are good. They are normal and healthy and as long as you keep asking them, everything is alright. It’s when you stop asking questions that you should be worried. Because it means you’ve given up. Don’t give up.

Also, don’t be afraid to fail. Imagine how many things you could do today, if you’re weren’t afraid to fail? You could ask that hot guy on a date. You could write a poem. You could make a YouTube video. You could write a song. You could start a band.

Now project that out into your life. There are so many things we stop ourselves from doing every single day because that little voice in our heads tells us that we might not be good enough, or we might not finish it, or we might not do it better than the other guy.

But that voice is stupid. Do it anyway. Chances are you probably won’t fail, and even if you do, it won’t be nearly as bad you think it will be. Also, you will have succeeded more than if you had never tried at all.

Have a plan for your life. You don’t have to stick to it, but you do need to have it.

It will help you keep your priorities in order. It will help you make huge life choices. And it will help you get to the next step.

I started out wanting to be a teacher, so I went to college. Than, I thought maybe I could try the writing thing, so I started working for the school paper. Then, I ended up being pretty good at it, and now I work for a candy magazine. I never became a schoolteacher, but imagine if I had never taken the first step to go to college?

Know which rules to keep and which ones to break. Maybe you need to miss a week of school to go to Europe. Do that. Maybe you need to finish all your homework so you can graduate. Do that. Maybe you need to play a clip of Zach singing “I like Big Butts and I cannot lie” in the mission trip video, for the whole church to see. Do that. Maybe you need to wear your yellow Mission trip shirt when everyone else does, so that everyone matches, and it looks awesome. Do that.

Serve others every chance you get, whether it’s opening the door for your mom, or painting a house on a mission trip.

Go on every mission trip you’re invited to go on. I promise it’s always more important than whatever else you have going on.

Read the Bible. Every day.

Brush your teeth twice a day.

Never text and drive. Never drink and drive. Always keep at least a car length of space between you and the car in front of you when you’re in heavy traffic.

Say please and thank you.

Don’t check your phone when you’re on a date.

Go to church every week. Even if you don’t feel like it. Especially if you don’t feel like it.

I confess that one of my biggest fears right now is that I will come back in six months and this entire youth group will be gone. I pray every night for that not to happen. Don’t let that happen. You are the group. No matter who comes in as the new youth leader, you are all the people who make up the youth group. Every single one of you. And as long as you keep showing up, you will all continue to have the wonderful place to come to every week to share your souls with each other.

Take your hat off when you pray.

Pray often.

Donate lots of money to lots of things. Give money to the church. Give money to the homeless man on the street. Give money to your mom. Give money to your friend. Give it away like you can’t take it with when you die, because you can’t.

Never, ever, wear navy blue with black, or brown with black. Just trust me on this one.

Buy the cheap gas, and the expensive deodorant.

When you are old, remember what’s it like to be young. Remember how crazy this time is for you. How emotional it is. How scary the world seems. And have compassion for those who are younger than you.

When you heart is broken, take the time to cry.

Maybe you need five minutes, maybe you need five months. Either way, give your heart time to heal before you date again. It’ll make finding your next love much, much easier. And yes, there will be a next love. I promise.

Forgive others.

Start by forgiving your parents for all the stupid things they did to you.

Then, forgive your best friend every time you have an argument, and your least favorite teacher when she gives you 10-page papers to write. Forgive the guy in traffic who cuts you off, and the boy who never calls you back, and the college that’s too stupid to accept you. And then take a deep breath, let it all go, and move on.

Ask for help.

I have gone through some extremely dark times these last few months, while I’ve been sick. And I’m not afraid to say that on some nights the pain was literally too much for me to handle. And I would think about things I shouldn’t have. And the only way I got through those nights was by picking up the phone and calling Eric or my mom or my friend Terri and having them answer at 3 a.m. and listen to me cry.

I would not have made it through the last few months without the help of my friends and family.

If you can ask for help, you can literally make it through anything.

Live your whole life with passion. If someone asks you to lead a youth group, don’t just show up on Sunday morning. Instead, plan an out-of-state mission trip; start a night group and then personally ask every single kid, every single week if they’re coming to that night group; decorate the room with the kids’ hand prints; serve pizza and Taco Bell and McDonald’s, respond to every single one of their text messages immediately; and pray for them all individually all the time.

Remember that you are always setting an example. People will do what you do. If you jump during the “Waves of Mercy” song, everyone else will too. If you are a hard worker, those around you will become hard workers too. If you care, everyone around you will start to care too.

Love your neighbor.

Love God.

Love,
Me.

Crystal Lindell
Youth Leader, 2010-2013

Last youth group 2013 Scrap Book
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