A Life Worth Living

     What is a life worth living?  Perhaps more importantly, when is a life not worth living?  When you have a terminal illness you can find yourself pondering such things.  You have no choice but to sit back and watch as your life slips away.  What you were able to do yesterday, you may not be able to do today.  Although your brain may be tired it still works as well as it ever did and it has these two lists, one for what you can still do, and one for what you can’t do anymore.  As one list continues to grow, the other is dwindling down, dwindling down to almost nothing.  

     You know that old saying about seeing the light at the end of the tunnel, normally it refers to coming out the other end of the tunnel, and leaving whatever problem behind you.  Not in my case, in my case that light is a locomotive speeding down the tracks, through the tunnel and straight towards me.  The light I see is the headlight and its getting very bright, and very close.  I can hear the sound of the train and it is close enough that I can smell it.  I should get off the tracks, jump out of the way but my body isn’t responding, the train is blowing it’s horn and neither can the train stop in time, nor can I avoid what is coming.  All that remains is the time needed to cross the space between the speeding train and me standing dead still in the centre of the tracks.  

     As this disease has progressed I have often pondered the question, when is a life not worth living?  What line does one cross and then decide that life is no longer worth living?  Probably not something most people would consider if they aren’t aware that their time is running out.  

     Is life worth living when……your legs stop working….when your arms grow too weak to lift yourself up….when you can’t sit up anymore……when you can’t lift your arms over your head anymore to put on a hat……when you can’t roll over in bed…..when you can’t shower yourself or use the toilet by yourself……when you no longer have the strength to lift a cup of tea……when you lose the ability to speak and be understood……when you lose the ability to do your writing because even that last finger you’ve been typing with is no longer listening to what your brain tells it to do.  I would like you to think about that……where would you draw your line?  

     Now let me share something with you, where you think you would draw your line, and where you would actually draw the line are likely two different places.  Where I thought I would draw the line when things were being pondered hypothetically is well…., well I have passed that line and I am still here.  

     I know many others who are travelling the same road that I am, and who are fighting the same monster.  During our online meetings we all look at each other, assessing each others points in our journeys.  I look at some and tell myself that what is enough for some, isn’t enough for me.  Don’t get me wrong I respect their personal decision to hang on, but I don’t believe I would do the same in the same circumstance.  It’s an incredibly personal decision, there is no right or wrong, all I can do is try to get it right, right for myself.   My dear sweat wife is wise enough to acknowledge that this is my decision alone and she will respect whatever I decide.  I do seek and accept her input, but in the end it is my decision alone, and it should be as no one else should have to carry the burden of that decision.

     So today, is my life worth living?  The answer is yes it is.  Why you ask?  My life is worth living because this morning Robin and I spent twenty minutes laying in bed together wrapped in each others arms.  It is the only time when my illness isn’t front and centre, the only time I can forget about being sick and am just a very lucky man and for twenty minutes I am in the best place in the world.  My day with Robin will have many tender moments, many I Love You’s, and a good deal of laughter.  I also get to go out and take our dog for a walk, enjoying the fresh air while sharing the love and companionship of our sweet loyal girl.  A dog who likes to remind me that you don’t need much to be happy, you just need to focus on the good things all around you.  And finally I will have some family or friends visit, sharing stories, memories, laughter and their good company.  Good friends who know that under this mess of a person I have become is still the same person who they have known for years.  So yes, there is still goodness amidst the daily struggle to survive.

     I have met the person who will in all likelihood be easing me out of this world.  She is a pretty young doctor with a kind gentle nature who is good at putting us at ease with everything that is going on.  I call her my “Killer Blonde”.  Imagine having a Doctor come to your home, spend an hour with you, actually listen to what you say because she doesn’t have to rush out the door in five minutes to get to the next patient.  My impression is that instead of being focused on how to fight whatever disease or illness they are faced with, they focus on quality of life for their patient.  There is a quote by Steve Leder here that I think fits.  He suggests that you ask the doctor this question, “Is what you are thinking of doing going to prolong my life or prolong my death?”  I believe this is a very special kind of doctoring that Palliative Care Doctors do, and from what I’ve seen I believe I have a good one.

     For now I am hurrying to get done what I need to get done, to make things easier for after.   Although presently I am a mess getting messier, I would like for all my affairs to be neat and tidy.

     As of next week all the paperwork will be done, after which I can place a phone call when I feel the time is right and within a few days I can make my peaceful exit, my last chapter finally complete.  The fight will be done, my body will be turned into dust and spread in several places, some I know well, and some I have never been to. And although my body will be gone I will live on in those who have known and loved me.  Robin will cry but she will also laugh because that is how we lived our life together.  My daughter Elizabeth will put on a brave face, well because she is a Brady.  When she runs into a problem and can’t phone me for advice, I hope that she pauses for a minute and figures out the solution she and I would have come up with together.  I hope that both Robin and Elizabeth will continue to talk to me after I’m gone, and I hope they hear me answer back because they both know me well enough to know what I would say.  I hope they will feel my presence forever in their hearts where I plan to continue living.  I will also live on in the hearts and minds of the incredible group of friends and family who were there for me, who walked beside me on this difficult journey.