Living in Crisis

6 08 2013

 

Our family is in crisis. It’s not the first time, and it won’t be the last.

Three weeks ago, our severely disabled 13-year-old daughter, Kathryn, had a full spinal fusion surgery. According to the “pain team” of anesthesiologists and neurologists, it is the second most painful surgery to recover from. (It’s second only to a certain kind of chest surgery.) So, we have been dealing with a lot of crying, screaming, tears, flailing arms, beeping machines, doctors, nurses, specialists, sleepless nights, and hospital meals – just to list a few of the trials of the last month. It’s been a hell of a month.

Depressed manTo add to the complications, both my wife and I have been dealing with health problems of our own that manifested in the week before the big surgery. Julie earned herself a hernia in her abdomen, which was surgically removed three days before our daughter’s surgery. She is not allowed to lift anything for several weeks, which is pretty challenging for the mother of a disabled girl. In addition, I earned myself an ailment called Meniere’s Disease, which landed me flat on my back on two occasions with two-hours of nasty vertigo – both episodes were during the week of Kathryn’s surgery.

Fortunately, we have a good support system made of our family, friends, and medical community. And fortunately, my wife is rock-solid strong and can multi-task and manage people really well. And fortunately, our marriage and faith are strong: they do not crumble in crisis mode. So, we are a ship built for high seas and formidable enemies. But none of that makes this thing easy. No, it just means we will survive.

The truth is that there is no easy way to deal with the big event. All you can do is your best. And that changes from moment to moment.

For us, the big day was July 16. Seven hours of surgery was followed by many hours of largely unsuccessful pain management. A special combination of heavy drugs were needed to keep her on that very thin line between pain and weak vital signs. She struggled with low oxygen, low blood pressure, and sheer pain for several days, actually. It was five days of hell for our daughter and for us. We saw it coming, and it did not relent. It was every bit as hard to deal with as we thought it would be.

The toughest part of our ordeal is that it is relentless. The days in the hospital were long, and the nights seemed longer. It gets a little easier, then it changes. If it’s not one thing it’s another. Seizures. Pain spells. Breathing trouble. Bowel problems. Muscle spasms. Doctor’s orders not followed. Noisy nurses at night. Doctors that don’t agree. Exhaustion. Etc. With little relief in sight for ten days.

Then we get home, and just as things are settling in to a new routine with new nurses and procedures, BAM. We have to go back into the hospital for a repair of the incision. And the threat of infection places the whole spinal fusion procedure in jeopardy. So, two more days in the hospital and one more surgery later, we get to go home.

Now, we are past the back pain and on to the muscle spasms in the legs. So, we are adding physical therapy to the new routines. We will continue to need a lot of nursing care, and it will be about a month at best before Kathryn can go to school. It’s going to be a long month. Maybe in two months, we will get the feeling of normalcy. Maybe.

It’s a sad story at this point. But we are making it, and the story is not over. The next several chapters may be tough too, but things get better. Life has a way of surprising us for better and for worse. Perhaps the worst really is behind us. God, I hope so.

So, what’s the point of telling this sad-so-far story?   Well, perhaps someone out there is just about to enter their own terrifying tempest. Perhaps I might have something here to help them get through it. I hope it’s not you. Please pass this along to someone you know who may need this.

The Mental Game

Focus on Your New Reality

You cannot look at life the same way and have any hope of survival. You are at war, so you must change your viewpoint completely.

Start with the best-case scenario. Visualize it. Hope for it. It’s probably still worse than your normal life, but it’s the best you can realistically hope for. Drop that buoy, and keep an eye on it.

Now, consider the worst-case scenario. Visualize what might realistically happen if some of the worst things actually occur. Now, check yourself. Not everything will go wrong, but what if the worst thing happens. Imagine what it might entail, but don’t go all the way down that rabbit hole. Drop that buoy, and keep an eye on it.

Your focus needs to be between those two buoys. That is the reality. It’s a new world, and it’s at war. Don’t look back at your normal life. Don’t look at other people’s nice normal, peaceful happy lives. Keep your focus out there between the best and the worst scenarios.

Prepare for the Worst. Hope for the Best.

Accept as absolute fact that you will win some, and you will lose some. So, expect  losses, even when you have done your very best. Be prepared for some crushing blows, sometimes one after another. They can pile up. Just keep your eye on the prize of winning the larger war.

It always gets better. A terrible morning can be followed by a terrific afternoon. That is a common assessment of my days lately. I often describe the day in two or three parts. “The morning was nice, but the afternoon was a nightmare, but then I slept great at night.” Or some such version of a good-new-bad-news description of a day. That seems to be the norm these days.

Just remember that it may get a little worse, but it always gets better. Just do the next thing as well as you can.

Survival IS Success

In a crisis, your goal is survival. Get through the crisis first, then later you can set some shiny new goals. For now, the goal is simple. Survive.

Give yourself some credit. This is a unique time. The odds are against you. You are the underdog. So, realize that you will have mixed results, and that is okay, as long as you get through in one piece.   What may seem like less-than-success is actually a smashing success. Booker T. Washington wrote, “Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.”

Whether that is comforting to you or frustrating, I don’t know. But I do know that THIS is the time to step up and give your best. It’s not time to rest. It’s game time. This is the time to reach down deep, lock arms with your family and friends, and dig in. Pray for a supernatural strength and fight for survival.

Lean into the storm. Press forward, come hell or high water.  The sailors on the high seas had a phrase for it: “Batten down the hatches!”

The worst is coming. Survival requires every man on deck, tying everything down to ride out the storm. It’s not time to sail with grace. It’s time to hold on for dear life and hope to make it through alive.

PRACTICAL ADVICE

I am a hopeless pragmatist. My boss calls me a “practitioner.” I can’t help but make things practical. So here are some of my best practices for a crisis:

1. Pray. Pray. Pray some more. Keep the faith. Don’t give up on God. He cares. He has been there. He knows what it’s like to suffer. And he heals – sometimes very slowly.

2. Practice optimism. Keep hope alive. Keep saying to yourself and to others that it will get better. The battles and storms will rage, but they will end. Remember that the trials are temporary. The worst of the worst is short-lived. Things will get better.

3. Simplify – Focus only on what matters most at the moment. Strip down your life its bare essentials, and focus only on the top priorities of the crisis.

4. Sleep when you can. You are going to need it.

5. Comedy is essential. Practice your sense of humor. Laughter heals. Ask for funny stories of others. Watch a funny TV show. Make something absurd.

6. Stay healthy. Eat nourishing food, drinks, and snacks to fuel your emotions, mental, and physical output, which will be three times the normal rate. Avoid self-medicating too much. Beer, donuts, and other junk food are comforting, but they may add to your problems. Enjoy food and drink, but be aware that sickness and even addictions can creep in during a crisis.

7. Use technology. Keep in touch with your family and friends with some simple emails and FB posts. Keep it brief, and see if they can spread the word for you. Look into CaringBridge and CareCalendar to help you communicate.

8. Find a time and a place to cry. The hospital chapel, the bathroom, your car, wherever you feel you can let go. Just don’t hold it in forever.

9. Consider scheduling counseling for you and yours. Good counsel can come from your friends and family, but often the worst counsel and the most trite, disheartening quotes will come from people in your life who mean well but say the wrong things. Don’t be surprised when people say really stupid things. They mean well. They are just not skilled. Professional counsel may be a great investment in your family.

10. Allow yourself to be a little selfish during a crisis. If you are in great need, then stop fixing everybody else’s problems. Let them help you. Read about the ring theory. It explains that you get a free pass on all sorts of things during the crisis.

So, what are some things that you think of or do to help you get through a crisis?


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2 responses

7 08 2013
a friend

Thank you for your candor. Your writing is profound and it is hard to add equally meaningful comments…
When I’ve been in crisis one of the things I’ve struggled with is that my mind tends to go on overdrive and I can’t stop it long enough to rest and sleep. The only thing that helps me regain perspective (and rest) at that point is reading the Bible. There have been times when I’ve experienced such soothing peace, in the middle of the night, from reading a Bible passages that I fall asleep like a baby. Other times it is just the reminder of who God is that helps me overcome my human thoughts.

11 08 2013
special needs mom

I attend the same church your sister does. I can so relate to all of this, and could have almost written your whole post. My son had the pectus excavatum surgery you referred to…THE most painful surgery around. This was years after several surgeries he had as an infant and toddler, and he was 16 at the time. We, too, spent a good week in the hospital dealing with all sorts of pain and drugs. It’s hard to bear when you watch your child in pain, but when they have special needs like mine and yours, it’s worse.

The advice you share in your post is all good. From experience, I can offer you hope and encouragement through all your trials with your daughter. I can tell you that it will get better, and God has a way of healing your memory. You will never ever forget, but the pain lessens as time goes on and is so often replaced with blessings. God bless you for enduring, loving, and caring for your precious daughter. She’s fortunate to have you as parents. Lean on the Lord; I know from experience He will carry you when you can’t take another step.

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