Expect the best, plan for the worst and be prepared to be surprised.  – Denis Waitley

Samantha and I have a saying, when nothing goes Right, Go Left.  That has guided us these past 8 years.   I admit, I have expected the best of things, I have been disappointed, I have planned for the worst, and been caught off guard, with good reason, and I have been happy with alternate results.  And, I definitely have been surprised in many ways.  Surprised with many things….Tom’s recovery, the people that help me, hospitals, lawyers, accountants, judges, doctors, recovery, therapy, social security, medicare…the list goes on and all of it a bit surprising.  So much to consider and manage.  And SURPRISE!  You also get cancer.  Yep.  You get one more thing to deal with.    Take that.  Deal with that.   Throw that into the mix and see how you do.  Things were going so good…..

Overall, I have been surprised that we could conquer it, work through it, manage it, and also  how resilient  we could all be and how we have found ways to make this situation the best it can be for our family.  We have learned to manage the challenges, to make the best of the situation, found ways to find happiness  and to make our family whole.   We could not have done as well as we have without the  help of our wonderful caregivers that made us whole, to allow us to take time off to enjoy life, to travel and find some peacefulness.

Always leave the door open for serendipity:  The occurrence and development of events by chance in a happy or beneficial way.  Like finding that $20 bill in the pocket of a jacket you haven’t actually worn in years.  Finding that lottery ticket in a wallet that is worth $50.  Just make sure you leave the opportunity open for an unexpected event that makes you smile or makes you happy or benefits you in some way.

Be here now.   Not much more to say about this but the fact that I have learned so much for Tom and his brain injury.  He has no executive function.  That is what makes us human.  That is what gives us the thoughts of the future, memories of the past and the motivation to do something.  He has none of that.  So I have learned that he lives in the moment.  What he is doing, experiencing, and enjoying is in the moment.  There is a lot to be learned from that.  Be in the moment.  Appreciate the moment.  Be grateful for the time in the moment.  Don’t think about “what if?” don’t think about “if only?”   It doesn’t matter.

When a doctor gives you bad news or bad odds, keep things in perspective.  Yep.  This is a hard one.  I worked with all Tom’s doctors on all the “bad” predictions, the reality of what was happening to his brain, to what may be, what he couldn’t do, won’t do and will not recover from.  There is no way to describe how all the bad news didn’t effect your own perspective, but I knew that I had to stay positive.  Then, I got my own bad news…those three words no one wants to hear.  You have cancer.   Perspective goes out the closest window.  After the shock subsides,  you must remind yourself, what is going well and that there are worst things….but at the moment, I assure you, you can’t think of anything worse.  You need to keep priorities straight.  What matters most.   Samantha and Tom.  Of course – get well so you can  take care of your family.  What is the worst that can happen?  Keep it all into the context of which makes the most sense.  Find your center, and keep it there.  Get the information you need, and don’t focus on all the worst.  Keep the faith.

When you banish fear and anger, you make room for bottomless emotions – love and hope.  Again, keep all things in their right place.  Make room for the right emotions.  Keep the love and don’t lose hope.  Fear leads to anger, anger leads to hate, and hate leads to suffering.   There is no place in life for fear or anger.  When someone is suffering, there is only room for love and hope.

You have to be….MUST be, your own advocate in today’s medical settings.  I have learned so much about our insurance companies and medical system and how broken it is.  You absolutely MUST be your own advocate.  Ask questions, ask why and why not.  Don’t take no for an answer.  Don’t take “I am not sure or we don’t know” for an answer.  Someone will know,  Find them.  With Tom, it was dismissed several times, radiologists, ER doctors, urgent care, etc.  All missed the signs.   With me, my cancer,  blood count seems low, it might just be normal for you…. it was we don’t know,…seems odd, not sure, haven’t seen before…and several labs with inconsistent results.  You need to demand answers.  Question denials of care, doctors and demand what you need.

Much of your train of thought is a runaway train when things are not going your way.  Sometimes the only thing you can control is your own perspective.  And in difficult times, you should always carry something beautiful in your mind.  Don’t jump on that runaway train.  Know that you can take control of that runaway situation, as hard as it seems.   Know that there is a light at the end of that tunnel and you can get there.   Don’t let things get out of control.  Pick one or two things that you can grasp and control and take it one at a time.  It is easy to feel that everything is speeding by you and you are just standing still.  It can be overwhelming…but take one day, one thing, one moment at a time, and know that you are doing your best.

Try not to be angry.   There are so many reasons I want to be angry.  Why did this happen?  Why didn’t I know?  Why did I go on my business trip?  Why didn’t the doctors know?  Why wasn’t more done?  You can ask and ask and there are no good answers.  There may never be any good answers to satisfy your questions.  But living a life of anger is not a healthy life.  Bad things happen in life.  You can’t fix them, you can’t blame people or situations.  Life is not always fair.  We may never get all the answers we want to satisfy our questions, grief or meanings of what happened.   Tom is still alive, and doing his best, and we are not visiting a headstone.  So, life is still good.  Challenged, but still better than an alternative.