Ten Rules for Saving Your Wife from the Modern Medical Gauntlet

Unexpected lessons I learned in the year she almost died

She said she’s at peace. And that’s the scary part.

The boys are old enough that they don’t “need” her, and I’ve learned how to cook. So I won’t starve.

My wife has genetic liver disease.

Both of her younger sisters died of something similar. Mari died 29 years ago from leukemia and Lili 6 years ago, also from leukemia. A year ago her mother died of liver cancer that started out as genetically-caused cirrhosis.

Right now that’s her diagnosis too. If that’s not bad enough, she also has Lupus, which is more than likely attacking her kidneys. She has many slow, accumulating, life-threatening problems.

We thought things were stable — and they were — until they weren’t. When the tipping point came, it didn’t pull any punches.

30 pounds of water gain in 3 weeks. Couldn’t sit up, get out of bed or walk without help. No appetite. Loss of 20 pounds of muscle. Voice so hoarse sometimes she can’t talk.

How do you help someone who can’t even tell speak?

We’ve seen a ton of doctors in the last year, searching for the real causes and real answers.

We’re not unique. We’re not alone in a health crisis of this magnitude.

Maybe you’re facing one too. If so, God’s speed. And I mean that with all my heart. I know your journey, your doubts, your hopes and the feelings that flood your chest.

Here’s what I’ve learned. I hope it helps.

1. You figure it out as you go

So get going.

Don’t expect to have all the answers in the beginning. You won’t. No one does. The “answers” can’t be encapsulated in a sentence, or a paragraph or even a book. The answer is actually a puzzle with a billion pieces.

Your job is to find the puzzle pieces, but you can only collect them one at a time. Every doctor, nurse, doctor’s assistant, receptionist, case manager or physical therapist has one piece of the puzzle.

If you’re wise, if you’re persistent, if you move with the spirit of Perseus saving Andromeda, they will give you one piece.

Get moving. Action beats pondering a thousand times over.

2. Save yourself

Let’s get one thing straight: you are the Save-er, not the Save-ee.

You are the backstop, you are the insurance policy. You are the hero and there is no rescue chopper.

You can not afford to burn out. Your loved one’s life hangs in the balance.

Give yourself the care you need.

No one will tell you to go to bed early or take a break. No magic voice the sky will say eat well or drink enough water, or take a nap. You must be that someone for yourself.

What you’re up against isn’t a sprint. It isn’t even a marathon. It’s a marathon of marathons. You will need energy, a lot of it. Not for one day, or two, but across weeks and months.

Self-care sharpens you, so you have the energy to act when you need to. And you need to act (see Step One). In this situation, time is not your friend.

Self-care saves you so you can save them.

3. Feel your emotions or they’ll kill you

Many a night I stood in the darkened closet desperately clutching my wife’s hanging clothes, pressing their perfumed happiness to my face.

I silently wept my guts out so she wouldn’t hear and get worried. It was my release from the unbearable not-knowing.

The most effective way to handle your emotions is also the most efficient: feel them when they come.

You’ll need a method to ride those emotions because they’re coming. All of them. With a vengeance.

Give yourself permission to feel the feels. The greater your capacity for sadness, the greater your sensitivity for joy.

And when the feelings subside, find a method to come back to stable again. You’ll need this. It will save you time.

In this journey, time is not your ally.

Feel your emotions when they come. Do not wait.

4. It’s up to you to diagnose the situation

No one knows how severe or urgent your problems are. Only you know that. And it’s up to you to tell others.

DO NOT let doctors dictate timetable to you. If you do, they will only see you on their schedule, at their convenience. You must push to get seen sooner.

Great questions to ask:

1. Do you have anything sooner?
2. Can you call me when a patient cancels or a time opens up sooner?
3. What will it take for the doctor to see my wife quickly?
4. My wife’s condition is severe, can you expedite her appointment?

If you’re afraid to ask probing questions like that (and yes, I’ve felt that fear too), nail your courage to the sticking place and ASK ANYWAY.

You’ll grow your confidence. The worst that can happen is they’ll just say no.

Push. Remember what’s at stake here.

5. Pay attention to details

Like her life depends on it. Because it does.

Want to see the pattern? Want to find the principle operating behind the scenes? Pay attention to details like your world depends on it. It does.

Keep a journal.

Any single data point — today’s weight, how much protein she had with breakfast, one blood marker on a single Comprehensive Metabolic Blood Panel — won’t mean much.

Taken together though, they reveal patterns and over time, they reveal relationships to other patterns. The relationship between the patterns is what you’re after.

The pattern of her protein intake is related to the pattern of her kidney function which is related to the pattern of her water retention. Increase protein to improve kidneys to lose water.

Relationships show you where you can help the most.

You can’t remember it all, too much happens to fast.

Keep a journal.

6. Get tough and ask the “experts” hard questions.

Remember: you have the power to bend the “rules”. They’re arbitrary anyway.

Ask hard questions of the “experts”. Make them uncomfortable. Push the boundaries (see Step Four).

No one will give you anything until you ask. Not even information. You’ll have to insist on it.

Be assertive but control yourself. Anger can be a useful tool, but too much will make them reject you.

When you have to expedite (and you will) find out their hot buttons (what they care about). Push them. Hard. Repeatedly.

Grill the experts. You NEED those puzzled pieces.

7. Learn how to talk to anyone.

Because you need everyone.

In this journey you will talk to more kinds people than you ever imagined.

You need to get comfortable talking to everyone from every walk of life. Your friendly voice, your smile, your laugh will open more doors you didn’t even know were there.

Practice the values of the spirit: mature patience, forgiving tolerance, undying hope, enlightened honesty.

This requires self-mastery. Hold yourself in the grip of iron-clad self-discipline. You’re not f*cking around here. Because the disease is not f*cking around with her.

Anyone could have a piece to the mystery. But you don’t know who.

Start talking. The only way out is through.

8. Find allies. Better if they have influence.

Some people will care as much as you do. But most won’t.

When you come across those who do, build friendships. Show them gratitude just for giving a f*ck.

People who have the capacity, and the willingness not only to care but to actually help are pretty rare.

So make all your interactions with them as humanly valuable for THEM as you can. You’re looking at a potential ally.

Allies can move mountains.

9. Ask a million questions.

You don’t know what you don’t know. Ask a million questions.

And understand, for lots of questions, no one knows the answer. In those cases, you’re asking to see into the future. Not possible.

Know when you’re asking that kind of question so you see the boundaries. It will help you keep your sanity in the maelstrom. You’ll need it.

You have to be put-together enough to know you need help and reach out.

This is the burden of the responsible. People assume you’re OK until you cry out.

But you are here to save others. Use your attention and tools and awareness to keep yourself mentally upright so you can ask for help.

No one will help you until and unless you ask. Ask a lot.

10. Fire your doctor

Especially the ones who don’t care. They’ll waste your time, and every second is precious.

Fire them. Move on. You won’t know who’s good and who’s bad until you start working with them. It’s an educated guessing game, but feel free to follow your intuition.

My experience is that if a doctor sucks on the first visit, they’ll suck forever.

Leave them immediately. Never go back. There’s a thousand others to try and some of the others are really good.

The thing that made the biggest difference for my wife was finding doctor who was the right combination of caring and expertise.

Dump the bad doctors till you find the right one.

11. Pray

Did I say ten? I lied. Here’s Step Eleven.

However you pray, in church or temple, with incense and chanting, with meditation or a quiet walk in nature, do it.

Prayer connects you with the divine source of all things, and if you can tune yourself just right, you can receive the never-ending spiritual water flowing from that source.

It refreshes you on a spiritual, soul level. It helps you better adjust yourself to the ever-evolving now.

It won’t change the world. That’s not the point.

It will change you. That’s the point.

With a renewed self, you can go change the world. Take the time to slow down, re-orient, refill, refresh and adjust (it’s part of self-care).

And remember: the best prayer . . . is action (see Step One).

Aftermath

Hold on tight.

Your reward in this journey is to live and love and laugh with the one who holds your heart in their hands.

Doing the little things you used to take for granted. Eating dinner together, but not in the hospital.

Walking. Without a wheelchair.

Seeing your loved one alive and smiling, as the sunset glows on her beautiful face.

You are fighting for precious life itself. By God, it’s worth it.