Sometimes there are no ways to sugar-coat certain things in your life. Dance around them sometimes you may but eventually reality sets in. This past weekend has been one of the most painful weekends of my life both physically and mentally. As we were travelling on Friday to a weekend wedding, I was talking to one of the doctors at the NIH about the next steps with my treatment. There are two different treatments, both experimental, that they are looking at. Now it is just waiting for all of us to agree on the treatment, the funding to be in place and the timing of when it will start. This part I have gone through, know very well and can handle. There was just one nagging question that was burning in my mind that I had to have answered. All of my doctors know to never sugar coat anything. I just want the truth no matter what the truth may be. I asked the doctor, "what is my prognosis?". I expected a lengthy explanation of what criteria they need to look at to develop a prognosis or at least some plan of action. The doctor answered, "we honestly just don't know". It didn't hit me immediately, but eventually I realized the gravity of the words uttered through the phone. I was talking with one of the smartest doctors in the world, the best of the best working at the best facility. It took the wind out of my sail to say the least. It was the perfect answer to the most frustrating situation.
I have often wondered if I was given one month to live what would I do. I certainly would not do what I do now, I would think. I would give more, travel more and do everything that I could to try and squeeze in as much as possible. Well what if I was given one week or even one day? The answer is always the same when you talk about shortening your life. You are not going to work at some meaningless job even if it pays you a fortune. You are going to do the things closest to your heart and the desires of your heart. When I was struck down by this disease in 2008, I thought about this quite a bit. The prognosis question never came up before. But I knew that if along the way they would have told me a certain date shorter than what I had in mind, then I had a plan for what I was going to do. The simple reality turned out to be that no prognosis would be given and I had a change of heart. I know that even if I get better and was told that my life would be of normal span, I would not go back to the life that I had before. I am already trying to do the desires of my heart like helping others, teaching others about life. The other desires like seeing the world and spending a couple months on an island will probably never happen but they were further down the list anyway.
What if none of this had ever happened? I would be where some of you are today. The truly sad reality is that none of us really know how much longer we have. We expect to live a long, somewhat normal life but are not promised one. Some of us die without warning, without ever living out the desires of our heart. This is where I would have been if it were not for this disease and the drastic turn it is made to my life. No one likes to hear that they have "x" number of years or weeks to live. But those are in some ways the fortunate ones. Because they know better than any of us what to expect out of life. My prognosis is poor, I know that. I have read the studies and looked at the progression and treatment outcomes. I am not sure how much time I have. I don't have the money to do everything that I want to do. Which is ok because I really don't have the energy to do many of those things anyway. I need simple things for the time ahead.
I guess if there is an overall thing that I would leave with you today it is that life, no matter how long, is short. Money means nothing without a kind heart to use it wisely. Possessions mean nothing to a man with no health. Life means everything to everyone because it is precious. Love life, live life and give throughout your life. Do this and you will live a life worth living.