On Surviving Labels...
I suppose I have been a patient since I was two years old and I’ve been a caregiver since I was five years... Assuredly, those two "labels" have helped shape my life.
As a preschooler, I learned to draw and write under oxygen tents. Thankfully, my mother had the wisdom to put paper and pens at my disposal inside those oldfashioned tents. Early in life, that pen and paper would soothe my terrified soul and somehow calm my trembling little body. I literally grew up on epinephrine and other bronchodilators. I have vivid memories of doctors talking to my folks about the strain on my heart that was caused by all the medications. I would go days with no sleep because of the drugs. The exhaustion was phenomenal.
Two decades of severe asthma led to a diagnosis in my early 20s of bronchiectasis. I was told at that point by the thoracic surgeon to whom I had been referred, that I would probably not live another five years if I did not quit smoking. The problem with that was I had never smoked. But my doctor, who had just seen inside my lungs, assured me they were full of smoke damage. Since that day, back in the early 70’s, long before it became popular, nobody has been allowed to light up a cigarette in my home.
I remember how my doctor’s warnings went much farther than “stop smoking”. One day I was in his office for a recheck following about a month in the hospital. He said I’d never be able to go back to work in a medical care setting again, so I should forget any continued pursuit of professional nursing. And I’d have to stay out of crowds the rest of my life, especially during flu season. Oh, he had all kinds of orders for me which upset me terribly!
So he left me alone to compose myself while he walked into the room next to me. He goes in the next room to see this skinny old fellow that I had seen walk past my door. He asked him how
Something about the contrast in that doctor’s approach with me, and with that very sick old man, did not set well with me. I knew I was sick. I knew I was not out of the woods yet, but I also knew he was not going to dictate how I would live my life. So when he came back into my room, I asked him what I had to do to get well. He wanted to know if I had heard anything he had said to me over the past month. You can’t get well, he repeated. You will have good years and bad years, he said. You may learn to adapt, but you will not get well.
Now, my mom had bronchiectasis really bad..., to the extent that she’d had one lung removed surgically. Her health was horrible. From the age of five until her death in 1993, I lived in fear of losing her. Her brother Howard had died with the disease at the age of 19. So, genetically I was not settin’ well. But that doctor did not know what kind of will power I had. So I demanded that he define some kind of get well scenario for me, just in case there was some outside chance that I could beat his diagnosis – his label!
Thus my favorite topic to speak about is not just outgrowing or defying labels (all kinds!), but surviving them. Since that diagnosis of bronchiectasis at age 23, countless others have attempted to apply undesirable labels to me, professionally, personally and physically. I have outgrown, defied, and most of all, survived those labels. It is I, and only, I who get to choose what labels I will wear!
In 2008 I reached an age that was TWICE the number of years my doctors had predicted I would live when I was a child. I am most blesssed because when you live with an awareness that death can come soon - at any moment, in fact - then you can truly learn to LIVE! In coming to realize the amazing power of CHOICE, I have learned to live productively and at peace with who I am and who I always am becoming… I can help you do the same!
To schedule a Workshop or Speaking Engagement email me at: maryjaneholt@aol.com