Six months ago I began my journey with a stage IV pressure ulcer, facing down time, flap surgery and more down time. Today I still spend most of each day in bed, but my incision has healed. I’m up in my chair four hours a day and making slow progress at home, looking back and seeing with clarity what I did right and what I did wrong, both before and after the wound appeared.
Here’s the list:
Wrong: spending 14-18 hours a day sitting — working at my computer too long, driving my car too much, riding my all-terrain four-wheeler too often.
Right: Having a home health care nurse come two to three times a week to care for a small wound I discovered on my left ischial area after all that sitting.
Wrong: Trusting the nurse when she said the wound was shallow and there was no need to go to a doctor or wound care clinic.
Right: Contacting a plastic surgeon the day the nurse poked at the wound with a cotton swab and discovered a bottomless pit.
Wrong: Trusting that I would be able to get an appointment with the plastic surgeon right away to fix the hole in my butt.
Right: Finding a top-rated wound therapy bed during the six-week wait to see the plastic surgeon.
Wrong: Trusting that my Medicare Advantage plan would provide the top-rated wound therapy bed.
Right: Appealing the insurance company’s denials three times while I lay in two different inferior wound therapy beds.
Wrong: Trusting that spending four months in inferior wound therapy beds would not cause other complications.
Right: Requesting physical therapy when I realized my painful right shoulder was getting worse by the day.
Wrong: Thinking a few weeks of PT would fix my shoulder.
Right: Deciding I will stick with PT no matter how long it takes, until my shoulder becomes functional — rather than have another surgery and more down time.
I’ll stop there. You get the idea. My six-month journey has happened a week at a time, with nonstop complications, setbacks, and just enough hard-earned successes. Now, even though my shoulder is always sore and prevents me from doing difficult or frequent transfers, I am experiencing what it feels like to be almost “normal.”
What I Learned
Two big takeaways: First, I learned the secret to staying sane and positive during down time, something that is always more difficult than we expect. When anxiety ramps up due to looming depression from being bedbound, it is helpful to think of what lies ahead in segments rather than one long, dreaded prison sentence. I found that I could keep making new goals to meet every two or three weeks, even if they are simple, like keeping an important doctor’s appointment or having a test done that will bring the end of confinement one step closer.
When you hit a slowdown and feel a slump coming on, it helps to take a renewed interest in the lives of friends, colleagues and family members. Being bedbound has a way of skewing reality, as if everything centers around your predicament. Meanwhile, others in your circle are having their own challenges and may need your support. It is not always all about you.
Being aware of others can even include taking an interest in national affairs, the civil rights of others who are not in your identity group, or, if you need a break, the latest episode of your favorite TV program, or binge-watching (if you can keep from getting “screen head”). If you are a sports nut, an upcoming game or match can boost your spirits. Having something to look forward to makes time pass faster and — once again — helps you avoid obsessing about your own problems.
The second takeaway has to do with where you are in your life cycle. It may be time for a change. For me, my latest medical challenge made me realize that I have reached the age where yesterday’s normal is tomorrow’s folly. Time for a lifestyle adjustment — so I can stay out of the hospital and not spend the rest of my life in bed. Time to sell or give away my hand cycle (aggravates my shoulder), adaptive golf cart (I don’t play much anyway) and all-terrain four-wheeler (which probably caused my pressure ulcer). Time to focus instead on finding an easier way to transfer into my stock minivan, onto a shower bench or a stinking high-rise motel bed.
In other words, adapt. Again.
That word keeps coming up, doesn’t it? The years roll by, our bodies slowly go downhill, so we find a way to prolong the journey, hopefully without giving up too much. That’s the key, the story of our lives, and the bright side is that it makes us stronger. What a beautifully tragic, yet somehow pleasing paradox: As we age and inevitably get weaker and more vulnerable, inwardly we grow stronger. Why? Because we must.
Welcome to Advanced Disability 504 — a graduate course in how to survive serious disability and aging. Prerequisite: a degree from the School of Hard Knocks and Then Some. What You Will Gain from the Course: Ability to Persevere, Increased Resilience, A Sense of Accomplishment, A Sense of Humor (mandatory), A Teary Smile, Wrinkles.
What’s on the Other Side of Tomorrow?
Now I have just one more hurdle before I proclaim that my journey is over and I’ve reached my destination. My plan is to gain strength and functionality enough to attend a reunion of fraternity brothers, from June 1-3, at a winery in California owned by my “big brother” from my UCLA days.
Some of the guys who will be there I haven’t seen for more than 50 years. Of course, I will be the only guy in a wheelchair, one of the few guys who doesn’t have a portfolio of stocks and bonds, and the only one whose body has fewer than 50 percent original parts. Most of us will be accompanied by our wives — our keepers — who will give us just enough leash to have a good time but not make complete fools of ourselves. Maybe.
It will be one of those weird, can’t-miss occasions when old codgers compare lives, tell lies and play pin-the-name-on-the-face. I figure if I can pull it off with dignity and a hint of grace and humor after eating and drinking too much wine all day long, I will have arrived on the far side of tomorrow.
I invite you to come along.
Of course, I understand you may be busy with your own life, so you can check out this space in June for my final blog in this series and my view from the far side. I promise it will be almost like being there — basking in the California sun at the winery — only a lot easier, cheaper, and you won’t get heartburn from getting pickled and stuffing yourself.
This is the sixth installment in Journey to the Far Side of Tomorrow, a six-part blog series chronicling our editor Tim Gilmer’s unexpected immersion into the world of flap surgery and all it entails. Read the first installment here, the second installment here, the third installment here, the fourth installment here, and the fifth installment here. We are hopeful Tim has developed a taste for blogging and will continue to share his wisdom by posting more.