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To My Brother Who Feels 'Helpless' in the Face of My Illness

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Some time ago I was telling you about my next treatment options. Doctor A wants to try this drug, Doctor B wants to try this one, Doctor C wants to wait and think about it. We got about as far as Dr. G before you interrupted this laundry list.

“I feel helpless,” you said, struggling to understand my condition, potential treatments, risks involved and ultimately if I could regain my quality of life you watched steeply decline.

young brother and sister

I realized after this conversation something I wish I had recognized a lot sooner. You see, for as long as I can remember I believed doctors were so intelligent they almost had magical powers. If you “didn’t feel well” you would go to the doctor, who would diagnose your problem, offer proper treatment and ultimately you would be cured. If it didn’t work that way you could seek alternate care or accept that there may be nothing wrong with you.

I don’t understand why I had this notion, and those around me were surprised that I had such high regard for doctors and medicine. We never really knew a dad that was healthy. His struggle with clinical depression began before we were even born, and only continued as we got older when he was also diagnosed with a rare genetic disorder resulting in poorly controlled widespread pain. Ultimately though, it would be a short battle with prostate cancer that would take him away from us. He saw the top specialists nationwide, and even they couldn’t offer him the magical powers doctors were supposed to have.

And then it was my turn. I soon found myself as the patient with a series of strange symptoms and lab results that suggested my body was attacking itself, but not much more than that was understood. And even as I developed episodes of dizziness and fainting, visual loss and cognitive dysfunction and fevers and joint pain, to name a few, I believed I’d see a doctor who’d diagnose, treat and cure my condition.

brother and sister standing outside

I’ve been fortunate to see the world’s leading experts around the country from the Mayo Clinic, Harvard, Cornell and many in between. And I want to be clear on something: I am grateful for everyone I have seen and those who are part of my “medical team.” I do believe my doctors want to lessen my struggling in any way they can. I know if they could end the pain they would. Recently though, answers are few and far between. Unknowns are plenty and confidence is often low. If doctors are the only ones capable of helping but are not offering magical solutions, what happens now? Feelings of helplessness pumped through my blood, increasing in concentration as symptoms progressed.

brother and sister holding a dog and standing under a palm tree

Here is the thing, though, that I’ve only recently come to realize: the most powerful forces treating a chronic illness are not always doctors. They are not even always medical professionals at all. For me, my “helpless” brother was actually providing even more relief than any doctor could offer me. Siblings don’t always have the answers that doctors have, but doctors never have the answers that my brother has had.

brother and sister smiling at each other

I don’t think any doctor has restored any amount of life quality as much as you have. You, my brother, are just as important, if not more important, than anyone wearing a white coat or stethoscope. You may not understand my condition (I don’t believe my doctors believe they fully understand it either) or any of the proposed treatments, and that’s OK. It is OK if you can’t play quarterback because it’s not your position. Perhaps you’re the wide receiver or running back. Just because you can’t play quarterback doesn’t make you any less important on the team. Without the other positions a quarterback would have no one to throw to. You’ve been the wide receiver and I’m only sorry I didn’t see that sooner. So, to my wide receiver who may be feeling helpless, I want to remind you of 10 ways in which you have and continue to score touchdowns every single day. Without you on the team there would be no team and dwindling hope for my future.

1. You never let me give up, no matter how badly I want to.

text from brother: 'I don't believe in giving up. You have it in you to be great, sick or not.'

2. You don’t admit to knowing when you really don’t, yet offer advice on things you really do.

text from brother: 'Hey, I'm heading to sleep now but I just wanted to tell you something that I've been thinking about. I can't imagine the pain you're in. I can't tell you I know what it feels like, cuz I don't. And I certainly can't tell you what you should and shouldn't try and do. But what I can tell you is this: Life was never meant to be easy, for me you mom anyone. It wouldn't be any fun that way anyway. Sometimes you hit bumps in the road, the great thing about them is that they're only bumps. And you know what's great about a bump in the road? Whether it's big, small, medium sized, you can go over it. You do get over it, always. Sometimes it takes a little more effort, work and time, but at the end of the day you get over it. In your life you'll face...'

'...tougher challenges each and every day, and I can tell you that I know you'll succeed each and every time. And this week is no different. I know at the end of the day, you're gonna get over the 'bump in the road' because you can, and you're my sister and I know you will. I can't promise that you'll get straight A's and get into everything you want, but I can promise as long as you give your 100% (whatever that is!) you'll get over whatever bump you're faced with. When it's all said and done, you'll be exactly where you want to, because you know what it takes... I love you very much, and I know you'll get over this, and dominate just like you do with everything else.'

3. You validate.

text from brother: 'Hi I know you are struggling and I was going to mention it earlier. It must suck to go through what you're going through right now.'

4. You give me perspective.

text from brother: 'There are a lot more important things in life than what you are doing, and who you are dating. Health is more important than anything: girls, boys, work, money, everything. Your health is more important than my job, girls, sports, literally anything. That is a fact. If I was sick my health would be more important than anything else. Do not forget that. I'd trade in my entire dream job for your health in a heartbeat.'

5. You cheer. You motivate. You encourage.

text from brother: 'So so sooo proud of you. I know it's not easy but you are kicking ass and it's amazing to see. And it honestly pushes me every day to see you keep pushing through so don't stop! Love ya!'

6. Even when I’m doing nothing I’m doing something.

text from brother: 'I leave the apartment every night and I get to the elevator, this is true btw, and I say to myself every single time 'holy shit Ronni is a frecking trooper, I gotta get some of that' and that's what allows me to get up at 5am. I think about how hard you push. That's what allows me to thrive and get over any issues I'm having.'

7. You remind me of my strength when I feel defeated.

text from brother: 'And when things don't go your way you figure something out, you find a way to pull through, and make it happen whatever it is.'

8. You’ve opened yourself to learning.

text from brother: 'Do you think me you and mom can sit and have a conversation about this on Sunday? I'm a little confused and I'm sorry. Text is tough and things get lost. I'd really like to hear all these things in person and discuss options. Maybe things you guys haven't thought of. I'm confused with all the doctors names. I get the whole thing is frustrating and I'm trying to understand all of the stuff involved.'

9. You care about me and my future even when I can’t or don’t want to.

text from brother: 'If you don't care about you, I certainly do. and always will. You got dealt a shitty deck, and guess what, you're going to play the heck out of those cards.'

text from brother: 'I don't want you to do something that will make you upset. Pain is temporary. Regret is forever. That's all. Just the way I think about things sometimes, even if it means pushing yourself a little bit further than you'd like. I don't want you to live with regret.'

10. No matter what symptom or treatment is next, I’m never alone.

text from brother: 'We're a family and that's what families do.'

text from sister: 'If health always trumps everything then it's always gonna trump every issue you have going on. I have a chronic illness. Health issues are there every single day.' text from brother: 'Okay then guess what? We'll tackle it together and I'll be there with you every step of the way. And when I need you, you're going to be there to help me tackle everything, I promise. We will work together on both of our every days.'

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Originally published: April 27, 2017
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