Don’t Bury me until I’m Dead!

The struggle that happens inside of us when our abilities, skills, friends, family and dreams are stripped away due to a chronic and debilitating, often terminal illness, and our search for new foundations and meanings is often more stressful and difficult to bear than the pain and symptoms of the physical disease.

It has been my biggest struggle and has caused me the most stress. As everyone knows, stress makes every ache and pain worse than it really is. There is mourning for all the things we have lost and a feeling of insecurity in every moment … what happens next? I have been to psychiatrists and psychologists, I have spoken to others in the same predicament and I have read every self-help book that remotely has bearing on my problem. I have spent hundreds of hours questioning even the very purpose of life, let alone the purpose of suffering. What a terribly lonely road this is on which we travel. I want to share with you a few of the insights I have learned on this journey.

This illness is not against you. This is not punishment. You did nothing wrong. Illness is not an indication of weakness. It is a message that you have worked hard enough, and it is now time to slow down to this moment. We need to leave every unnecessary thing behind. We have to stop rewinding the movie of our past lives and stop fast forwarding to a future of missed chances, unreachable goals and death. We need to even let go of our search for answers. We will know the answers soon enough.

Let us find a place of gratitude amongst the rubble of our old dreams…from a place that has no future ideas that can never become a reality, to a place where we can again discover the delight of uncertainty, never knowing the outcome. This is a time when we need to let go of how we thought life would be and come to terms with how life actually is, in this moment. It is in this moment that we will find a sacred place for comfort, safety and peace.

Admitting that you are tired of trying to get better, tired of trying to pretend you are well when you are not, tired of explaining the unexplainable, tired of continually trying to fit into your old life, tired of accomplishing nothing in a day, even to yourself will bring a measure of relief. Stop trying to please others, stop trying to be more than you are in this moment, because all that you are is good enough.

Allow your body to guide you in what you can and cannot achieve in a day. And then let it be. If today you managed to get out of bed and get dressed, you have already achieved. If you only managed to go to the toilet without help, you have already achieved. There will always be days that you will wake up and be glad you never took your life yesterday. There will also be days when you wake up and are sorry you did not take the departure ticket you were offered yesterday. And this too is OK.

When doctors and nursing staff begin to withdraw their emotional input, know that this is only their way of dealing with their own emotions and it is no fault of yours. Their withdrawal is a measure of how much emotion went into trying to get you well. And it is OK.

When the pain becomes unbearable – stop, close your eyes and allow the sensations to move through your body. Use your imagination and breathe in healing energy while breathing out the pain. Do whatever works for you, but don’t beat yourself up about it. Vomiting and pain cannot last forever, nor yet for very long. As surely as the sun follows the rain, the pain will subside and you will be able to think once again. Just try taking one minute at a time, and then the next minute, and eventually you will be able to do it for ten minutes at a time – when you get to an hour at a time, you are through your crisis.

This illness is an invitation to stop, slow down and do whatever it is that is most important to you. Make a bucket list of things you are able to do and that you would like to do. Then aim at just one of them. If you are unable to do anything about it today, tomorrow holds the possibility of more energy that will take you one step closer to that goal. Find something that is bigger than you – something you can do that will serve others, even if it is only using social networking. It will present you with an issue that can give your life new meaning. With today’s technology, you could join any number of groups with the same interests as you. Just because you are ill, does not mean that you are unable to learn something new every day. Learn a new language, learn to play a musical instrument, take a part of history that interests you and study it, read all the books you have always wanted to read but never had the time, start a journal that you can leave behind for your children or grandchildren so they can remember you or learn about what kind of a person you were. Become your own best friend and do whatever it is you would tell your best friend to do under these circumstances.

If you have a rare disease, become your own medical detective. Read as much as you can about your disease. Rare diseases are seldom seen by physicians and you are likely to learn more than your primary doctor and unless you are at a research station, you will also know more than your specialist or consultant. Become an active participant in your own journey. Become an exceptional patient. Exceptional patients help the medical profession to see things they may have overlooked. Often, it is the exceptional patient who will stumble on a cure for a previously incurable disease.

Your life is not over. You have only just started a new one. Walk courageously (even if it is in a wheelchair or bed) forward. A new day has dawned. Every day you live is a miracle – you are not defeated. Everything is OK and it is OK not to be OK.