I searched for my Texas cousin Sara’s blog, “Sara’s Corner,” but it wasn’t there. Last December, she took early retirement after 25ish years of working for the same company since college, rising through the ranks and reaching a position of power. She was the proverbial corporate gal, a go-getter and we wondered what her next act would be. In January, we learned it was breast cancer. Surgery, chemotherapy and radiation dominated her year, which was punctuated by a hysterectomy once the cancer treatment was complete. An ordeal to be sure. Her blog provided updates on the treatments and her state of mind, which was remarkably, consistently positive — not only with the status of treatments but as if this was merely another glitch in the corporate project that was her. It was nothing short of inspirational and reminded me that everyone handles set-backs in different ways and I very much liked her way. For Sara’s supporters, it allowed us to get an update, feel relief but not have to knock down her door to do it. So when I searched for the blog and the latest update, cyberspace gave me nothing. I contacted her to ask about the blog. And that’s when I learned she had taken it down. The ordeal was over and she told me that taking the blog down was a sign of her victory. I love it. She did it again — a simple, intuitive solution. When the fire is over, just put it out.
For the better part of the last week, I’ve been fighting a nasty cold-with-low-grade-fever-type infection funk replete with not one but now two cold sores accompanying me on my lip and nose. To my mind, I’m in an autoimmune crisis right now. I’ve been to the endocrinologist who asked, “Do you think your thyroid levels might be low?” and to which I replied, “Well, I typically do not get this many cold sores when my thyroid levels are in the right range.” As far as autoimmune strength is concerned, I generally fare much better than others with really serious issues like rheumatoid arthritis (which my sister has) or juvenile diabetes (which my brother has). But look at just about any research and you’ll see that those who have suffered serious burns (like me) tend to have compromised immune systems of varying degrees. Growing up, I had what I considered to be more than my fair share of colds, bronchitis, strep throat and of course, mono (I was quarantined for two weeks) and a little psoriasis here and there (mostly on my elbow). Thyroid came later. All of which means that when I’m run down, I tend to get sick and stay sick longer than seems fair. In fairness, I can’t blame only the burn injury however much I would like to. But it’s another area where I wonder what affect those burns actually have had on me.
- Deeply tired of having cold sores (ask.metafilter.com)
- The Autoimmune Epidemic and My Highlighting Skills (housewifingaround.wordpress.com)
I read the following passage the other day and wondered, “Where did the author get this crazy idea?” and “What’s this wacky idea about resigning yourself to your fate? I disagree.” What do you think? Here it is:
Abe Lincoln once remarked that ‘most folks are about as happy as they make their minds to be’. He was right. I saw a vivid illustration of that truth as I was walking up the stairs of the Long Island Railroad station in New York. Directly in front of me thirty or forty crippled boys on canes and crutches were struggling up the stairs. One boy had to be carried up. I was astonished at their laughter and gaiety. I spoke about it to one of the men in charge of the boys. “Oh yes,” he said, “when a boy realizes that he is going to be a cripple for life, he is shocked at first; but after he gets over the shock, he usually resigns himself to his fate and then becomes as happy as normal boys.” I felt like taking my hat off to those boys. They taught me a lesson I hope I shall never forget.” Dale Carnegie, How to Win Friends and Influence People, 1936. Reissued in 1964.
- Quotes for the Week 10-25-10 (tulsage.wordpress.com)
My research thus far has included requesting medical records (from doctors, hospitals and rehab centers in Green Bay), talking with brothers/sisters/relatives, friends of my parents (who died in the 1990s) and even a smattering my own friends about their thoughts, remembrances, perceptions, misconceptions. “Didn’t you get burned on Halloween when the lantern you were carrying dropped and you caught on fire?” one relative queried. “No, not at all,” I responded. And that is the most exasperating thing — trying to prove out what I thought happened with all the other red herrings. This is why I so want to see the 1965 medical records. In my mind, they will confirm the story imprinted on me since youth or they will enlighten me with new information. Thus far, the most complete written record of the story has been found in my blue baby book when my mother wrote out an account of some of the details she chose to share in an eerily upbeat way. I’d like something a little more evidence-based but I understand that may be something that never comes my way. I also understand that whatever I may find may not answer some of the questions I have — like how did I get from home to the hospital? Or, how many “debridement” procedures (peeling off of the dead, burned skin) did I have before the plastic surgeries? My questions do indeed range from the basic to the macabre. Does anyone out there have additional ideas on who, what or where I should invest some of my research efforts?
- “The Records…..Have Likely Been Destroyed….” (annegallagher8.wordpress.com)
- Be Careful What You Wish For (annegallagher8.wordpress.com)
- Dear Uncle Sam: Pretty Please, Keep Track Of My Medical Records (itsonlywords55.wordpress.com)
“I just want to warn you not to be hopeful,” Terry in the Business Office of a medical practice said when I asked her about finding my medical records from the 1960s. That said, she said they would manually look through the ‘old books’ of records from the 1980s backwards to see if they could find mine. I saw Dr. Sullivan from the time I was a kid through college in the 1980s and despite the warning, am hopeful my medical records from the critical 1965-66 years still exist especially since I’ve hit so many dead ends. My original plastics surgeons are dead; their records destroyed. The hospital only had my records from the 1980s (and ironically, the woman assisting me in the medical records department was named “Bernie”). Dr. Hoops became my plastic surgeon in 1967, well after the original accident (and I do have all his records of me now). But my curiosity rests in the original records. Cross your fingers. Dousman Clinic may still come through.
If you poke around, you’ll see (as I have) that many people write about burns. Recently I finished Burned: A Memoir (www.louisenayer.com), and was fascinated by this book because it describes the effect of a mother’s burn on her daughter. I contacted Louise to ask her some questions about why she wrote the book and we’ve developed a communication of sorts. Other books I need to explore include Burned But Not Broken (www.michaeljnolte.com), Nothing Left to Burn (www.jayvarner.com) and The Burn Journals (www.burnjournals.com).
I’m not sure if the world needs another burn memoir but I still want to publish mine and I realize even from this handful of books that my story is completely different than these. Every burn it seems is unique.
When I emerged from my initial burn hospitalization after 3 months and countless surgeries, I headed to a place called the Curative Workshop (www.newcurative.org) for rehabilitation. I remember putting on a bathing suit and going into a round metal tub filled with warm water (maybe this was precurser to the modern-day hot tub but a whole lot less fun and definitely without the jets). Today I called the Curative Workshop and records from the 60s are long since destroyed. John, the medical records historian, has only been working there for 17 years which unfortunately didn’t help me. He also didn’t remember a worker there named Audrey. Another person I remember as the woman who helped me in that metal tub so many times over so many months. So, another strike-out today on the information front.
- Medical records of first chemo patient (holykaw.alltop.com)
Finding people after 40 years is something of a daunting task. Yes, there are some alive and well, and even willing to talk about what they remember of my accident. But then there are the ones I think of and only remember a first name — Maggie, my nurse in the hospital, or Audrey, the physical therapist. I talked to my friend Sue who works at the hospital where I was treated so many years ago and she confirmed that in our modern world, our modern human resources rules mean people can’t share much. So will I ever find these people I remember? And if I did, would they remember? Maggie the nurse would. When I was 18, I went to visit a friend at the hospital, St. Vincent’s. When I walked out of the elevator she ran toward me and hugged me. I had no idea who she was until she told me, tears in her eyes. How she remembered me then, 15 years after she had last seen me, still startles me.
Have you ever been burned by something in life? Most of us have. My burns were 3rd degree, which is severe but they didn’t get in the way of much that I wanted to do in life. Yes, I was self-conscious and still am (my burns cover my legs, but mostly my right leg). As I’ve grown up, I’ve realized that everyone has some “burn” — whether it be visible or not, they are there for all of us. My goal in writing this blog is to tell the story of how resolution found me. It was not something I was looking for or thought I needed. Yet when it came it was a wonderful blessing and I want to tell the story.
- Burns and happiness (danariely.com)