Accountability and Self-empowerment
What emotions are you feeling? Are you feeling optimistic and in control? Or are you feeling powerless and desperate? Upon a serious diagnosis, all of us feel somewhat powerless, desperate, traumatized and victimized. Rightfully so! A serious medical diagnosis is a terrifying life changing event, but it can also be a call to action and time to rally your most inner strengths. Accountability is the key to survival and success in any aspect of life, and confronting a medical diagnosis is no different. You are the captain of your own ship, and the sooner you take the helm, the better you will be able to make decisions about what treatments are best for you and how you want to take on the situation. It is very important that patients realize that whatever results they achieve or whatever the outcome of any treatment, it is ultimately their responsibility. It is your life, and you are the guardian of that life and the ultimate decision maker about what treatments will be best for you. You are the ruler of your own destiny and no one else can take that from you. We recommend doing whatever empowers you and motivates you to fight for what is special in your life. You might pray and ask God for strength, read self -empowerment books, see a life coach, or if possible take a motivational seminar.
The bottom line here is to be clear about your intention and purpose, (staying alive, maximizing quality of life, managing your chronic disorder) Stay focused on the end goal, and do not lose sight of that goal no matter what obstacles are presented. If you find yourself straying into despair, chat with people in your WeHeal community and share what you are feeling and going through. I guarantee you are not alone.
The basis for “The Secret”, a principle that has been studied for centuries, is that what you focus on most mentally will manifest itself in the physical world. The book and movie “The Secret” http://thesecret.tv/ which features Jack Canfield “Chicken Soup for the Soul” and a variety of other motivational and inspirational speakers which I have studied extensively and highly respect, can be an amazing tool and can help you focus and stay positive. If you haven’t seen this movie, rent it! Essentially, If you focus on fear and dying, you will create fear and dying. If you focus on survival and how life will be great after you conquer your disease, you will naturally create solutions to accomplish this!
Staying focused on your goal is crucial as it literally will help you manifest your goal into reality. Everything starts with a thought or intention, and if you keep your intentions clear and keep your mind optimistic and focused on your goal, you will be ready to act on solutions when they are presented. If you focus on the negative, wallow in a state of victimization, and live let your mind run with fear, you will likely not even recognize a lifesaving solution when it presents itself. Meditation, Mindfulness, and other practices can help you stay focused on the only acceptable outcome. Keep yourself surrounded by positive supportive people who bring you up and give you hope. Watch only comedies and inspirational movies, and whether you think you need it or not, seek counseling so you have someone to speak to about your darkest thoughts and fears. Many cancer treatment centers and large hospitals include seeing a therapist as part of their treatment regimen. Some local therapists may donate their time to work with people fighting serious and terminal illnesses so keep yourself open to finding these resources.
After I was told by one of the world’s leading medical centers that nothing else could be done for me, that my prognosis was probably 3 -6 months tops, and that home hospice care was being arranged, I went into despair and depression. I was hysterical and crying all the time, feeling victimized and saying “why me” over and over. When I went to see my therapist at the hospital who was part of my cancer treatment, he asked me a very important question. “Eric, If this is the last few months of your life, is this the way you want to live it? This really sank in with me and reminded me what I have studied and known most of my life, that my experience is my choice! I immediately shifted myself and never again have gone into such depths of despair and depression, and instead focused my energy on enjoying life, being thankful for everything I had, and finding a cure.
Loud and squeaky wheel
Although anger can be a symptom of victimization and can burn energy that you need to focus on solutions, it is a much more productive emotion than despair! During my battle with leukemia I became quite angry at multiple times. I was very angry and felt severely violated when I learned the intricacies of our for-profit medical system, when insurance companies denied me treatment, when hospital workers stole my identity and went on a shopping spree, and when nurses were over and hour late with my medications while I sat there in searing pain. I was angry when I learned that a vast majority of research money goes toward treatments and medications that are going to be most profitable for pharmaceutical companies or hospitals, but not necessarily best for the patients. The main thing that getting angry did for me was to make me the loudest squeakiest wheel in the hospital. The doctors and hospital staff may have thought I was a pain in the rear and didn’t like me very much, but they were definitely afraid of getting on my bad side. The point I am trying to make is that although I would not recommend using anger as a strategy because it can be self-defeating, being a loud demanding patient can save your life. I will discuss this in more detail in the sections about strategies when dealing with treatment professionals.
Surviving a Terminal Diagnosis
Nowhere is it more important to realize that you and only you can decide your fate when presented with a “terminal” diagnosis”. The news and books are filled with miraculous stories of survival where patients simply and suddenly get better. My survival from leukemia was not one of these! It was a long drawn out battle, but there were many times when I miraculously recovered from life threatening infections and other complications, even after doctors told my parents that I was losing the battle and to prepare for the worst. Those times of miraculous survival I can only attribute to shear will and faith.
I remember a time when I was battling several life threatening infections a few months after my umbilical cord stem cell transplant in Minnesota, and things did not look good. With no immune system I had 5-6 bacterial and fungal infections in my blood, my fever hit 106.8 degrees F, my body was burning in intense pain, and I could feel my life slipping away. The docs had pulled my mother out of the room and told her that she should prepare for my departure and simultaneously sent in the Chaplain.
I was so delirious that I could not differentiate being awake or dreaming, and I had very vivid visualizations, or hallucinations if you will. In my mind I was hanging on to the side of a vertical cliff (I remember visualizing Half Dome in Yosemite (pic link), it was a stormy windy blizzard and I was naked and freezing, with my arms and legs burning so much form fatigue and cold that I could not move. I realized that there was no way I could climb out, and at the same time I knew the obvious consequence of letting go. At that time of ultimate desperation, it was the love and support and thoughts and prayers coming from so many people that gave me the strength to hang on. I remember my thoughts at the time.
I knew what would happen if I let go, so for the sake of all those who have been supporting me through this fight, I will keep hanging on as long as I can. In one minute, I will re-evaluate and see if I can keep hanging on. Then maybe try hanging on for 5 minutes. It was as though the love and energy everyone was sending me was giving me the energy I needed to just hang on in faith and trust that what was supposed to happen would. Ultimately I never let go, and so I am here today.
I was so close to death at that time that I remember having to force myself to stay awake for two nights because I knew I was so weak that if I fell asleep I know I would have died in my sleep. After a day or so I needed an urgent blood transfusion, and my nurse had to give me a shot of Benedryl antihystamine, which literally knocked me out and put me right to sleep. Nicole, my fiancée at that time, said I slept for almost 48 hours and when I awoke, the infections had miraculously cleared, my eyes opened brightly, and I said “I am ready to go home now”. I few weeks later I was on a plane home to California and ever since the day I got off that plane I have not needed another blood transfusion, as my new bone marrow was making enough blood to keep me alive. Since the transplant day of 07/23/04, I have been cancer free.
The reason why I tell this story is to make the point that there is always hope, no matter how bad things seem. There is always hope, and as long as you have the desire to fight and hang on, then the battle is not over. Don’t let anyone else tell you when YOUR game is over!