DYING IS NOT AN OPTION? Installment 12
I’ve written so much about the basic emotions and scientific facts following the prognosis of my disease, but I’ve never really touched upon the deep-seated roller coaster of emotions that tore at my mind and soul. Those clawing panic feelings of loss and horrific knowledge that time would now stand still, and at the same time, pass quickly . . . and . . . at the end of my life game . . . my present existence . . . as I knew it, would be taken from me forever. From that very dramatic moment of the CLL/SLL diagnosis, and then on to the impending prognosis and time line for living, with every beat of my heart, with every breath I take, my leukemia will be gaining purposeful destruction on my body, taking away the precious time line for living I had sooo taken for granted. Time had been stolen, not only from me, but from my family, friends, and business associates. It really, really sucked!
To be diagnosed with a fatal disease with no cause and no cure, and be given a time line of 6 – 8 years from diagnosis to death, is heart-wrenching and painful, especially for a family as close as ours. Everyone in my circle has had to experience the loss of knowing I’ll probably never live to be 70. Before this interruption in my life, I had planned to reach 80 plus years, like the other women in my family.
I knew with the prognosis that I’d have to cram the rest of my life into the next 6 to 8 years. I would never see my grandchildren have children, never grow old and be able to travel with my husband after he retired, never see my children achieve their fullest potentials or share in the joys of them experiencing their first grandchildren. I would never fulfill the dream of seeing my television series for children evolve into something bigger and better than I’d ever dreamed possible. I would never complete the futuristic work I had planned for my company. Never see my present projects divide and multiply into other creative projects. I have so many planned book ideas, scripts, and musical ideas, and now they would have to be sidelined. (notes on a computer.) A time line for living affords just so many minutes in a day. Many good ideas I’ve been working on will have to be passed over and put on the back burners of time. Projects that are in the pipeline of the entertainment business will have to be accelerated and fast-tracked in the upcoming months, fitting themselves in . . . all the while . . . taking away time and energy from my family and friends. If I am to accomplish even a small fraction of all my plans and dreams for the future, I would need at least twenty more life years. Six to eight years just ain’t gonna get it.
It seems that I’m destined to be an unfinished human product, stopped in my tracks at the height of my potential and achievement, and in midstream of my plans, never to bask in the twilight years and enjoy the end result of all the work and love I’ve put forth in raising a generational family with pride, values, and spiritual promise. I’ll never realize the end results of my scripts and books for children, and never get to finish what I perceive to be my higher purpose in life– projects and books for children with moral and value teaching skills. (Those creative and written works that I’ve poured my energy, heart, and soul into for the last twenty-five years or so.) Now . . . my life has a stopwatch of time on its face. Those potential earned reward points, enjoyment and leisure moments, and those difficult creative dues I’ve paid, will never be realized or enjoyed by me in my golden years.
The thoughts and the feelings that raged through my mind at hearing the news of my leukemia and the impending prognosis were so grief-filled, at times I literally wept with the sheer futility and loss I would be forced to endure in the short years left to me. Yes, we all die. I’ve heard that statement so many times, it makes me gag when I hear it. To know I was going to die “someday” is a little different than hearing that you are going to “more than likely” die within 6 – 8 years. I certainly don’t want to die in my mid to late sixties, but there’s nothing short of a miracle that I can do about the impending prognosis. I finally ‘got’ that little tidbit of reality.
Acceptance of a time line was the first level I had to reach in my mind and soul. The fact that I didn’t cause my cancer, and there is no present cure for the type of leukemia I have, was a huge obstacle for me to accept. When I was first diagnosed with CLL/SLL, I couldn’t even imagine there would be a time line attached to a prognosis. After I found out the results of the gene testing and the negative “recovery” markers associated with my type of leukemia, I had to try and accept that I’d been handed a limited time line for living the rest of my life.
In the beginning of the whole leukemia drama, I couldn’t believe that I was going to die at a time in my life when my creativity and life works were ready to explode into the limelight, and that the life plan I had worked out in my mind was now a moot point. I’ve had projects in the works for over twenty years, and they are finally finding fruition and placement. Then, to find out I was going to be one of those people who die at the height of their success and recognition. What a crock! Was I pissed off? Absolutely, I was! At who? No one person, place or thing in particular. Just Mother Time!
I promised myself from the get-go that I would never blame anyone for my illness. Ever! So far, I’m on track with that promise. The leukemia is my enemy. Not time, not the environment, and not the people who care about and love me. The reality and the sheer facts are that I’m going to die within a certain time line, and therefore . . . I’m being forced to make some very real, daily, and futuristic decisions. Decisions and time lines have an immediate need to be put on the fast-track and taken care of by me. On the other side of the coin, I’m also dealing with the emotional path of regrets, time, sorrow, doubts, and the pain of what I presume (in my limited mind) to be future losses. I will never live to orchestrate or participate in so many things I took for granted. That’s the underlying truth I’ve had to face with my impending prognosis. Tough to grasp, but factual.
One of the first things I did after going through the painful reality of an impending death sentence was to try and write down on paper a list of projects and personal things I wished to prioritize and accomplish within a 6 year span of time. That was tough because I actually had to think in terms of months and days. Why a 6 year span of time? According to everything I’ve read, the time to act when dealing with a fatal disease is when the leukemia is in the first stages, when you feel fairly upbeat and human, energetic and healthy. In the final stages of CLL/SLL . . . well . . . I doubt very much if clarity of thought or of making creative and decisive decisions will be a priority in one’s mind. Survival and containing of one’s life energy . . . Yes! Clarity of mind and energy for projects and dreams, pretty doubtful!
I’ve figured out for myself that once I move into the survival mode of the final time line of the last 2 years and the winding down of productivity, it’ll be far too late for achieving anything more than trying to closet my energies and live the best I can with quiet dignity. In preparing for the time span of 6 “active” years, I’ve also prepared my mind to move on, beyond that time line . . . one day, one hour, and one minute at a time, trying to deal with one medical problem at a time as necessary. Most days I put the prognosis of having a fatal disease onto the back burner of my mind and soul, but it rears its ugly head at the damndest times. Many nights, I wake from a sound sleep with the words on my lips and the words echoing in my mind. “I’m dying . . . I’m really dying!”
My advice to anyone traversing through this short life span is to stay busy and focused. It’s my new living, daily mantra folks. I feel we all have to set daily and yearly goals. Work hard to achieve them, and eventually, who knows, we just might bring them into fruition. I’m doing it! Take on one goal at a time, then, move quietly to the next goal. Dying should not, and will not, be an option for me, and it shouldn’t be for you either. Live life with laughter and joy while you can, and live life as if it’ll be taken from you tomorrow. Cherish what you have today, and try and achieve those goals you may have set for your family and yourself for the immediate future. Time is a precious commodity. Life is sheer, transparent vital energy. Tap into it. Live every day to the fullest and with vigor and promise. God is real and “He” is cheering us on with our dreams. Never forget your potentials for success matter to the entire universal consciousness and to the life energies of God, Inc. He has a plan that’s so much bigger than we’ll ever be able to recognize for us, and we just need to trust and move along to the beat of life and its purpose and wonder.