PAMMIE POST
In my heart, there is always faith, hope and miracles in the wings, coming at times when least expected.
Attitude and Depression with CF
Attitude and Gratitude–Autumn 2003
BY PAMMIE POST
As I ponder this focus topic “CF: Attitude and Depression”, Isabel (currently a category 5 hurricane) is heading towards the East Coast with menacing, devastating winds of 160 mph., carrying bands of terrifying thunderstorms accompanied by pelting rains. Seas are horrific, no place for vessels of any size. Yet boaters are out in the Atlantic Ocean, trying to dodge her path, weathering her massive, God-size force. The Coast Guard and National Guard are on high alert.
I am thinking about the epic effect Isabel will have on hundreds of thousand of lives, praying hard too that by miracle, she will peter out before she hits the coast, somewhere between North Carolina and New Jersey, leaving wide paths of catastrophic destruction and loss of life. Meteorologists predict Isabel will make her mark in history, just like her predecessors: Camille, Gloria, Hugo, Floyd, and Andrew, to name only a handful.
Cystic fibrosis, at any age, can be likened to storms. It could be a sudden abrupt change, a slope towards shortness of breath, wheezing to beat the band, increased, continual infections requiring IVs, painful intestinal cramping, severe episodes of hemoptysis (coughing up blood) stemming from bronchiecstasis, side effects from medicines, or life-threatening bouts of aspergillus, an airborne bacterial mold that I was allergic to. Not surprising, my list may differ from others. Everybody with CF is unique, despite the familiar, similar manifestations.
Our genetic makeup, DNA, mutation of the CF gene, (there are over 1,000 different mutations) family history, living environment, love and support from family, friends, doctors, etc. vary. Do we have ability to receive the best healthcare from experts in the field and can we take care of ourselves in the manner that CF demands, while trying to cope with normal daily life issues? Family histories of depression play a role in seeing the glass either “half empty” or “half full”. I truly believe that no matter what I have had to deal with, a healthy attitude has definitely contributed to help me cope throughout my almost fifty years. In my heart, there is always faith, hope and miracles in the wings, coming at times when least expected. Ergo, I always anticipate miracles and tell others to do the same.
Perhaps it is easier to be born with a life-threatening challenge, than to all of a sudden be knocked off guard clear out of the blue? Incredibly so, I was born into a fantastic family. My mum frequently said to us, “I am the happiest and luckiest mother in the world. I have five extraordinary kids.” We heard this spontaneous song of joy usually on road trips or whenever we all were together. Once en route to Maine, in reply to Mum’s familiar declaration, my older brother shouted from the back seat, “Mom, I know a luckier and happier mother than you!” ‘That’s not possible, okay who?’ Mrs. J___, she has nine children.” The car swerved, as Mum nearly drove off the highway in floods of laughter. Dull moments were hard to come by.
My family upbringing was the best. From early on, Mum, just like her parents, a tremendous role model, complete with unconditional love, positive attitude, grace, fortitude, kindness, compassion, good humor and a golden heart, instilled upon her five children to possess positive attitudes, with keen appreciation for everything in life. This rang deep in our hearts, as three of us barely knew our father. I never knew him as his life ended tragically and suddenly in a small plane crash five months before I was born.
As youngsters, we knew that life was precious and to live life to the fullest. I suppose this is why when we played in the New York City parks, we played hard and had fierce competitions to see who could come back with the dirtiest hands. Mum was also adamant that we came down to breakfast sporting smiles, hard for me to do following rude, abrupt awakening coughs that rattled my mind and body. Still, wearing a smile was a whole lot easier than climbing back up a flight of stairs and trying again. My mother’s teaching ingrained in us at tender ages, became my guiding force in coping with CF, especially as CF and its package deals started to give me troubles at age 28.
The funny thing is, I seemed to be the only one in the family, among schoolmates, friends, and young church goers etc., to have a consistent cough, wheeze, belly aches, and the propensity to get sick easily. How come I had to wear more clothes outside and get allergy shots since age 2, among other things?
While hospitalized at seven months, with failure to thrive, doctors believed I had whooping cough and celiac disease. Well, not exactly. A sweat test at age eleven confirmed CF. Happiness was the day I got pancreatic enzymes, different medicines that worked and got told I had CF, which was causing all the pulmonary rauckus.
Laughter definitely reigned in the family. Sometimes a good laugh helped us get out of situations. (A technique I found useful in school.) The more we laughed the more contagious it became. It had to be good. My lungs felt better too. Positive forms of laughter create bonding. It’s a universal language.
One of our favorite after dinner games was “Egg Football”, played on the faithful, antique dining room table. The game was not a Milton Bradley® variety. We each took turns preparing the egg; sometimes more than one was needed, in the event it rolled off the table causing a humpty-dumpy fatality. The egg had two holes pierced at the polar ends. The insides were blown out with lung power. (This procedure definitely helped clear my lungs.) Four candlesticks were used as goalposts, two set at opposite ends of the table. Every other person around the table was on the same team. Goalies were stationed behind the candlesticks. To move the egg, we had to blow hard. Laughter always got in the way of progress. This was entertainment and amusement at its best.
One day, in the blows of battle, with guests in attendance, the poor heirloom table cracked, folding inward to the floor. The egg followed in hot pursuit. Silence was abrupt and deafening. My parents, thank goodness they were there too, took it in great stride. Our next table had extra leaves and legs every four feet. Egg football remained to be a popular sport. However, nowadays, egg football is not something I would recommend, as it is one terrific way to spread germs. Back in the 60’s and 70’s, blowing in people’s faces didn’t faze anyone. The number one rule: if someone had a cold, etc., they were spectators. Number two rule: hindsight of course, no elbows on the table ever.
Laughter is still by far my favorite medicine. Following my bi-lateral lung transplant three years ago, my laugh changed considerably in a pica second. There are no lasting, wheezing sounds, like a struggling car engine trying to turn over and over. There are no coughs, no shortness of breath and no coughing up blood, which irked and frightened me. Back then I laughed the silent laugh, a good trick to prevent hemoptysis. I still laugh a lot, although the laugh, like the cough, is harder to produce, probably from some nerve endings playing tricks on me.
I have heard that scientific studies on laughter have proven that it doesn’t matter if the laugh is silent or booming, the benefits are still the same. Have you noticed when you laugh hard your muscles get more relaxed, uncontrollable tears stream down the face, endorphins produce natural highs, tension is relieved, anger gets dispersed, circulation improves, your insides get a jolly, intense workout, mind becomes more alert, clearer and pain is reduced? All of a sudden what might have been a bother, has been transformed. My blood sugars levels drop too. So why aren’t people laughing more often? This is a whole other topic.
My father was a cartoonist. Rats, I haven’t found that drawing gene, but I do have an insatiable appetite for good humor, cartoons, funny cards, and photos. This does not help the clutter control, or better yet, lack thereof. Bookshelves are jammed with cartoon books, as my collection keeps growing. My “greeting” card collection is massive as well, all categorized, just like my cartoon collection, for easy finding. Another irresistible habit is reading cartoons to feed the funny bone and to counterbalance the constant barrage of too much bad news that offers little hope of peace in the war on terror. These funnies infuse my mind with humorous images; easily portable with the ability to recall at a moment’s notice. What is best is getting in touch with favorite cartoonists, like Randy Glasbergen, who generously gave us permission to use his superb cartoon in this issue. Randy, you keep me giggling all the time. Thanks! To easily view more of his creative, humorous cartoons, go to http://www.glasbergen.com.
Now why is it that when we need good cheer, especially during tough times, people get tense and serious? Do you also find that people in the medical professions sometimes suppress their personalities to conform to rules and regulations, or is it because of the enormous stress they bear from working long, hard shifts, and having too many patients?
Yes, there are times when I appreciate quiet or am too sick to entertain. To help reduce stress, turn a frown into a smile. I transform my hospital room from a stark place to one that is a warm, happy, inviting environment. Cartoons and what not, start at the door and fill the room. There will be photos of family, and places I love too. It always is a work in progress. At times, family or friends help to make this transformation happen.
Oftentimes, if my door is closed, not just staff or medical students but visitors will stop by and chuckle. A smile explodes. If staff doesn’t leave the room with a smile, I tell them to read a cartoon. Magic happens. Attitudes change, and I feel a whole lot better too. Now trouble comes when the midnight aide starts to read the cartoons via flashlight, then laughs aloud, immediately wakes up the roommate, and trots off down the hall to fetch a friend. Is it no wonder sleeping can be a challenge at times in a hospital bed? Oh, the joy of laughter touches and heals on many levels.
At an early age, I came to the conclusion that I could not live with a grump all my life. Ergo, I accepted CF as a friend, not that I didn’t deny and defy her, like during those lovely teenage years. CF and other diseases are great teachers. CF definitely taught me patience, true appreciation, the gift to see silver linings, to laugh in the midst of trouble, a quick channel changer for the mind, to accept what I have and to move on.
Without CF, I never would have met so many exceptional, inspirational people, tremendous doctors, nurses, technicians, aides, receptionists, kitchen staff, cleaning people, other patients, in hospitals etc. I probably would not have been aware of tremendous impact USACFA does for the CF community worldwide. Nor would I have had the chance to be a part of this special, talented group or have met others across the nation, who offer wisdom, understanding, guidance and support.
Sometimes medical challenges are wake-up calls for people to turn lives around for the better. Sure there have been times of sadness and weakening of a fighting spirit as the slope felt too steep and dangerous, when breathing sitting still, even with supplementary oxygen, required too much energy and burned too many calories, when infections seemed out of hand, even post transplant. But above all, I had peace within brought on by my faith in God, the grandeur of Bill’s loving support, our families, relatives, tons of friends, doctors, nurses, et al. who remained steadfast, armed with wisdom, understanding, prayers and beliefs in miracles too.
I still have CF, but not in my lungs. My dear, courageous donor and her loving family gave me a prized gift of life; powerful lungs that give me the freedom I had never known. In a wink of an eye, once out of surgery, transplant recipients quickly have to adapt to a new regimen with lots of help from the transplant team and supporting staff. It is wild how life changed so dramatically and so quickly, and totally for the best! Out went the old, in came the new, with more manageable problems. My total life style change was also mind-boggling for so many who knew me. That which was familiar is history. Hallelujah!
Attitude and gratitude go hand in hand. Life amazes and amuses me; complex technology, progress in medicine, beauty, humor, tickled by frequent sensations of exploding spontaneous joy that come from even the tiniest things too. All six senses are attentive. People, environments, all aspects of nature, music, art, inspirational stories, books, articles, cartoons, even medicines or the unexpected event, bring delight and an overflowing sense of gratitude.
Once during a rough summer day pre-transplant, I was greeted by a little humming bird, a gift from above. This fine, small, creature, full of exorbitant energy and beauty hovered in our small garden to fetch nectar from purple salvia right close to me. At the time, I was quiet, looking and listening to nature, just stoop-sitting on steps near our front door, with little energy to spare, on IVs, and tethered by a generous 50-foot oxygen hose that led to my wonderful concentrator, my purring friend, my life source.
Any given day is filled with gifts of random acts of kindness and immense gratitude. I admire people and nature and am so appreciative of being alive. Being able to help from the goodness of one’s heart, with no expectation of reward, and to receive with true appreciation from the heart is great medicine. The effects can be profound and make us glow inside. It is known to help change attitudes.
Pammie turned 50 on October 30th. She and her husband, Bill, live in New Canaan, CT. She is a former Director of USACFA.