My name is Jim Schutte. On Friday, 24 June 2011, I found Carolyn, the love of my life, unconscious in our bathroom. Her face was blue, her eyes open and unresponsive, and she had no pulse. Although I feared at the time that she was already dead, I immediately called 911 and initiated CPR. We were able to bring her back to life, but she had already suffered brain damage. This is the saga of her recovery, and the struggle to decipher what happened in the first place.
I am a scientist by training, a writer by profession, and a husband by the deepest committment possible. What follows is a log of love, inquiry, discovery and recovery.
2 July 2011. The best way to tell a story is to begin in the middle, retrieve the past, and carry it forward. So I'll begin with today's status report. Today, for the first time, Carolyn began following people with her eyes. She tried to speak, and actually made some growling sounds. But the circuits that connect her brain with her tongue glow brightly on the CT scan of her brain, meaning that they're gone. Fortunately, the brain is an amazing organ, and when one circuit is broken, it can create another to take its place. Yet the process is slow, difficult and frustrating to both the patient and the family. It is a marathon in which progress is measured in millimeters and the goal, obscured by the fog of doubt and uncertainty, is months away at best. Only one person in 20 in Carolyn's status makes a full recovery. Yet no one who knows Carolyn doubts but that she is that one who will. Today is but one of a series of tiny victories along the way. However, exhaustion compels me to stop for now and pick up the story tomorrow.
3 July 2011 ICUs are technological marvels for the critically ill, but psychological torture chambers for their loved ones. You wait. Cold, hard reality presses against your every thought, and only hope and dogged determination prevent it from crushing you. You wait. The damage has already been done, and you are helpless to correct that which only medicine and time can heal. You wait. Boredom allows the sewage of doubt to seep into your brain, so you struggle to keep your mind overflowing with thoughts ranging from what kind of tree that is outside your window to why M&Ms come in so many different colors when they all taste the same. You wait. Your loved one's recovery comes in tiny flickers of activity followed by seemingly endless periods silence and inactivity. You wait. You talk to your loved one repeatedly about her importance to you and her need to fight to regain consciousness, and of all the wonderful things the two of you will do together when she wakes up. You wait. The sun goes down, you grow too tired to talk or to read, so you sit in a darkened room listening to the hiss of your loved one's breath as it flows in and out of the tube in her throat. And then you wait.
And because you wait, you learn to appreciate that which you took for granted. Carolyn's beautiful brown eyes were the feature I always found most attractive. Strong, intelligent women have a certain fire in their eyes that attracts me like a moth to a flame. Carolyn's eyes project not only fire but warmth. Since her collapse, however, those eyes could only stare blankly into space. Today, for a few seconds at a time, Carolyn was able to focus those eyes on me and I could see the flame slowly reigniting. You cannot appreciate the pure joy that arises from simply having your spouse look at you until you have had that privilege taken away from you.
Even her ability to breathe has been a struggle. She suffered a respiratory collapse--for reasons that I will delve into tomorrow--and was placed on a ventilator. She had been breathing through a plastic tube in her throat, and on Friday they replaced it with a tracheotomy tube. But your diaphragm weakens quickly when a machine breathes for you, so you have to be weaned off of it slowly. Today, she breathed entirely on her own for 4 1/2 hours. The respiratory tech said he was impressed that she could go so long. Yet you could see in her face how hard she was working, and how relieved she was when they turned the machine back on. She is becoming cognizant. When a tech told her he was going to suction out her lungs, her entire face wrinkled in revulsion before he even touched her. It was odd--the rest of us finding relief and joy in the fact that the person we love so much was reacting to the fact that someone was about to inflict pain on her.
The story continues under the Journal tab.
Sep 24, 2013 10:03pm
Carolyn turned 59 last Thursday. Many thanks to those of you who sent her greetings. Gifts, of course, don't mean much to her now, but I fed her all the chocolates and pistachios she could eat, and that made her happy. But what made her REALLY happy was when I called her dad, Dayton Wallace, and put him on the speaker phone. You should have seen the way her face lit up when she heard his voice. Unfortunately, her mother had an accident recently and was in the hospital, so Carolyn couldn't hear her voice too.
Ever since I brought Carolyn back home from New Jersey, I had hoped to get her parents up to see her. Chase has volunteered repeatedly to go and bring them to stay with us as long as they wanted. They've agreed to come, but other events have kept them from setting a date, and now it's obviously not possible for them to travel until Carolyn's mom gets out of the hospital. However, I'm still hoping that we can get them here. It would be such an incredible boost to Carolyn's morale.
Which brings me to another subject. A lot of people ask me if it would be okay to come and visit Carolyn. My answer is that friends and family, without exception, are always welcome. All I ask is that you haven't recently been exposed to an infection like a cold or flu, and that you call ahead and give me time to make sure that she's dressed and ready to receive visitors. Also. be aware that Carolyn's reactions on seeing people she hasn't seen in some time can be unpredictable. As I've explained in the past, it is common for brain injury patients to have a disconnect between what they're actually feeling and their ability to express it. Not always--usually her reactions are clear and appropriate. But sometimes she'll yell as if frightened or angry when she's really trying to express delight. Yet with patience and a little gentle teasing ("Are you trying to sing to me, Carolyn?"), she'll usually start laughing and showing her true feelings. Then again, there are some days when she's "spaced out" and just not connecting at all. It's unpredictable, but she's getting more consistent in connecting with reality.
Last week, Chase and I got to take a break and go on a weeklong backpacking trip to Panama. The preparations were more than a little complicated because I had to arrange to be continuously accessible by phone, should anything go wrong with Carolyn. Verizon has service in Panama, but at a roaming fee of $3 per minute. Fortunately, there are WiFi apps that allow us to communicate for free, and almost everywhere in Panama has WiFi now.
I toyed with the idea of putting Carolyn in the nursing facility while I was gone, but decided against it. Every time I've put her in an institutional setting, we've gone from one infection to another, and she winds up back on tube feeding because no one wants to take the time to prepare her food so she can feed herself. So I arranged for 24-hour care with her usual caregivers and explained what was going on to her regular doctor so the caregivers could turn to him immediately if any problems developed. The arrangements for Carolyn's care cost a lot more than our vacation, but at least I had the comfort of knowing that she was safe and comfortable at home and being taken care of by people who genuinely know and love her.
As for Chase's and my trip, it was a blast, with lots of unusual events that only backpackers would appreciate--such as spending the night in a "hotel" that consisted of a bamboo elementary school classroom strung with hammocks on one of the Puna Indian reservation's archepeligo of tiny Caribbean island paradises. Backpacking is one of those things that you either "get" or you don't, and those of us who do get it never outgrow it. In every backpacker's hostel I visit, I encounter at least one person in my age group or older. My favorite was a 69-year-old grandmother taking her 19-year-old grandson on an around-the-world trip to acquaint him with the lifestyle. Chase has already posted a lot of photos of the trip to his Facebook page, and I'll be doing the same in short order. But enough about me--you're here to read about Carolyn.
Progress is coming slow right now. Just today, we were finally able to get her back in the standing frame. Even then, the ulcer on her foot from the people in Omaha misapplying her foot brace still hasn't healed entirely, and we're going to have to go slow so as not to make it worse. Carolyn seemed to do well--she laughed and smiled while upright, whereas she previously just showed irritation with us. But it's important for her circulation, bone density, and to strengthen her leg muscles. Whether she'll ever walk again we cannot know, but this is the only route that will give us a shot at it. And she is getting more consistent with her Yes/No responses.
Normally, I would go into a rant on some medically-related topic about now, and I have a good one in the making. But I'm running low on time and energy right now, so it will have to wait.
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