Somewhere Over My Rainbow(s)

(Part 4 in the series Choosing More Surgery)

I have always loved “Somewhere Over the Rainbow.” I identify with Dorothy in The Wizard of Oz, the neglected girl who was being bullied. She ran home looking for help, or for someone to just listen to her. “Find yourself a place where you won’t get into any trouble!” her Auntie Em snapped instead. Compliantly, Dorothy sits down with Toto, her terrier, and sings the most beautiful song ever sung.

Now I have my own rainbow. In fact, I have two of them.

My grafts have “taken.” Burned people know what I mean when I say that, but other readers won’t. My tight torso was surgically opened 49 days ago. My surgeon, the brilliant Dr. Eberwein, designed two huge grafts, which are shaped like… two rainbows. Each rainbow starts at the center of my waist, arches under my breast line, and descends back to each flank. Together, the rainbows are 22 inches long and 1 inch wide. They stretch bright red but a bit scabby across my middle.

Dr. Eberwein means well but like all surgeons, she wastes no time. After a recent consultation, she was heading out the door when I pointed to my rainbows and inquired, “Why this design?”

She smiled and came back. I guess all artists (and Dr. Eberwein is truly an artist with scars) enjoy being asked about their work. “You needed more skin not only around your waist, also more skin length-wise. The new grafts are surrounded by as much old skin as possible. This will reduce shrinkage and improve healing.”

I will say, not everyone has two rainbows around their middle. I am a staunch LGBTQ ally, but this might be taking it too far.

Anyway, as I was saying, my new grafts have “taken.” The staples are out, and the new skin is knitting itself into the old skin. I won’t “lose” them, which is what happens when the body rejects and sheds the new graft all together. Tragically, this can happen to burned people, although it doesn’t usually happen to me.

Am I done? No, nothing like it. My rainbow grafts lie protected under gauze pads, held in place by “burn net.” Burn net is like a soft white cotton tube. When you pull it apart, the tube expands and expands like magic, until it fits over your arm or leg, or in my case, my entire torso. Then the net contracts to hold the gauze pads in place. Burn net is like that child’s toy, the one that starts like a little ball, but when you pull on it, it expands into a delightful giant globe. Burn net is decidedly unlike that toy in that it isn’t cool and doesn’t spark joy in the least.

Then there is my donor site. The very words “donor site” strike dread in any burn survivor. “Don’t touch my donor site!” I snap at my husband. “That’s my donor site!” I warn, too loudly, when my friend hugs me.

A donor site is the place where non-burned skin gets farmed. The surgeon removes some non-burned skin, which then covers the graft. The donor site is the most painful wound. The graft is not usually too painful, because it is new skin, still establishing neural networks, blending itself into a deeply scarred area, which usually has damaged nerves to begin with. Not the donor site. The donor site comes from a non-burned area, with all nerves fully intact. The top layers of skin are peeled away for the graft, leaving a wide swath of deep scarlet wound which must heal over the next few weeks.

Burn care has advanced a long way from 1967, when I was injured. When I was a child, the donor site dressing changes were tortuous. Blood-caked bandages were ripped off the open donor site, as I literally screamed in pain. All the burned kids endured this donor site dressing change, twice daily. It remains the worst physical pain I have ever experienced.

I have produced one kidney stone and two perfect babies. I have had countless donor sites. No pain compares.

Current donor site technology is much improved. This time, my wound is coated with a protective seal. On top of that is a loose netting. On top of that are gauze pads. On top of that is more burn net. Thus protected, my donor site doesn’t hurt much, and there are no dreaded dressing changes at all.

Today I was finally cleared to take a shower, my first shower in over 6 weeks. Lest you think otherwise, I did take sponge baths in the meantime and wiped myself down with various cloths. These cloths felt like giant wet-naps on my body, but they left me feeling clean(ish). Washing my hair proved to be more complicated. It took a team of a professor (my husband), two psychologists (me and my friend) and one occupational therapist in training (my daughter) to devise a workable system. This system involved a bathroom sink, one watering can, one spray bottle, one shower chair and me, wearing my gray waterproof raincoat, while my daughter shampooed my thick hair, carefully tiptoeing around my wound vac.

This morning, I stepped out of my burn net, pulled off my bandages, and padded into the shower. Initially, the water stung my fragile donor site, so I sidled in cautiously. But I adjusted, and the water began to feel awesome. I soaped myself again and again, watching scabs and tiny bits of gauze fall away. I imagined my body shedding the last two months: five nights in the hospital, two long surgeries, blood, vomit, insomnia, pain. I watched it all slip down the drain.

I stayed in the shower for 30 minutes, until all the hot water disappeared.

I hoped I might be completely healed in 7 weeks. However, it turns out that I am not done. The last time I saw Dr. Eberwein, she informed me that we were now “on the second stage.”

Oh no, I thought, I didn’t know there was a second stage.

“Now we work on keeping the grafts from shrinking. (Yes, grafts shrink, if you are lucky enough for them to “take.” All grafts shrink, at least somewhat.) “So, you need to put cream on them twice a day and massage them gently. And let’s do a laser in three weeks.”

That laser was unexpected, unwelcome news. Every time I am lasered, it requires general anesthesia, a dreaded IV insertion, pain medication, and days of recovery. I can’t work afterwards. I am hot, itchy and uncomfortable for days. I didn’t want to do another laser. Not now. I’m just getting over all of this.

Honestly, I could have cried.

“OK,” I replied instead.

Burn care has come a long way since the 1960s, at least in this country. The physical pain is much better managed. Visitors can stay with you all day. Wound care technology has advanced. The lasers work magic on scar appearance.

But let me be clear. Being burned still stinks. I have one of the best surgeons, and one of the best burn teams. I have a husband who did everything possible for me, changing my bandages like a ninja, fretting about infections, tucking me in every night. Like Dorothy, I had dear friends who journeyed with me. Two friends stayed at the hospital with me for days, bringing me food, arranging my pillows, putting on my socks. Before discharge, one of those friends even grabbed my vomit tray when I was done heaving, and convincingly responded, “It’s OK, I don’t mind.” Another friend drove me to appointments and gave me Reiki treatments. Others brought meals, mailed cards, sent flowers, made calls. Like Dorothy, I even have my own loyal terrier companion, my little Frankie. I have so much going for me. I am grateful, but let’s be clear. It still stinks.

Yes, sometimes life stinks. Remember Dorothy? She was alone, neglected, and being persecuted by a neighbor who transformed into a witch. In the end though, all Dorothy wanted was to be back home. Even though her family disappointed her, her dog might be seized, and her landscape was in black and white. Life is like that. Good and bad. Easy and hard. Blessings and curses.

At least now, I will always now have my rainbows, these rainbows which make it so much easier to breathe and make every moment more comfortable. I will have worked hard for them, a lot harder than most people work just to be able to breathe comfortably. But this work is almost done.

(For more on this series "Choosing More Surgery, see Part I , Part 2 , and Part 3 .)

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader