I have very severe chronic obstructive pulmonary disease (COPD) and a co-morbidity of congestive heart failure (CHF). As if I do not have enough concerns, a trio of thoracic aneurysms add a redundant layer to the complexities of my life. I am 58 years old and I will be beating the odds if I am around to celebrate my 60th birthday.
Dying from this illness is bad, but living with the illness can be frustrating. There are so many changes to make and compromises to accept. I feel like I am being diminished. Like the tide rolling over a beach, and in its retreat, washing away another fine layer of sand, and another fine layer of my life – I mean my other life.
My other life is the time when I could dance, swim and run without concern. When I skydived soaring through the summer blue sky, and then danced the night away in a mini skirt and go-go boots beneath pulsating strobe lights timed to what I now realize was dangerously loud music. When I could carry a bag of groceries in one arm and a baby perched on my other hip climbing a flight of stairs with ease. In my other life, I could do anything I wanted to do. Those were days before I had deal with tangling trails of oxygen tubing, the timing of breathing treatments and meds. Before days of terrifying moments of panic when shortness of breath overwhelms and emergency room visits when things get bad – some times very bad.
My other life had goals: some lofty and some trivial. In this life, my goal is staying out of the hospital and my life-span, period.
My body has betrayed me. My life has been stolen. I want it back.
As much as I might yearn for the days of carefree youth and health, the reality is that my life is irreversibly altered. There will be no reprieve as there is no cure for COPD. The only thing I have control of now is how I well I live the rest of my days.
I am reminded of the caterpillar shrouded in a cloistered cocoon preparing to emerge as a creature of beauty and wonder. I must change my perspectives and goals by accepting the laws of nature. I must find within me that Divine well of strength to nourish my soul, fortify my spirit and renew my physical body. If I can not change my fate, I have to change me.
So I am the reluctant butterfly, but a butterfly I will be.
Anyone with a serious illness must come to terms with the resulting feelings of loss and grief. My emotions rapid-cycled in a bi-polar way through stages such as: sharp anger, an unpleasant self-pity type of depression and an unflattering old-fashioned jealously of the healthy. It seemed I was always one stage away from the acceptance part. For me, acceptance was at last achieved through stillness of mind and body found within meditation. And I think exercise is one of the most beneficial actions anyone with COPD can do for themselves. Exercise gave me reason to celebrate with a sense of achievement and control as each goal was surpassed. Although my overall time on the exercise bike will hardly keep a cycling athlete awake at night, my dedication and motivation instilled and nurtured by my therapists are world-class. In addition, I continually research the disease for greater understanding as knowledge is power and I follow the advice of professionals. I sought out and cultivated a partnership relationship with some excellent physicians who I trust with my life. Finally, it is important to become your own advocate. Ask questions, and then ask more questions. Speak up and speak out about your own care.
One more thing, you are cordially invited to my 60th birthday party. It is going to be a party of a lifetime. See you there.
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