All the pain you cannot see

This text was written some time ago. Exactly when, I don’t remember.   A month ago, two months ago?  It is immaterial when it was written. The fact is that it was basically pounded out on the computer in about two minutes flat.  The feelings came over me like a storm and the darkness descended onto my heart and this is what came out.

Since Jim and I try extremely hard to focus on the positive, this darkness is for the most part unseen by most.  Jim and I try to keep these moments of darkness to ourselves as they really serve no purpose in the love filled life that we live.  Love for each other, love from our kids, family, friends, neighbours, and all the strangers who choose to interact with our Facebook page or send us messages through our blog.  But these moments do exist and I feel that it would be wrong to somehow cover them up and never speak of them again or even disguise them as something else, or sugar coat them somehow.  I have been asked openly by close friends to describe some of the aspects of these dark moments.  What does it feel like?  What triggers complete darkness?  What brings us back to light? The answers to all of those questions are very difficult to pinpoint as each dark moment seems to have a life (and a death) of its own.  Daniel (our son and editor of our blog) received this missive about one minute after it was written.  Not sure what his initial reaction was but I know that after some reflection he called and we discussed editing it somehow.  The fear was that maybe this is somehow too dark, too raw.  Well, he’s right of course, it’s raw and dark.  But It was only one small snapshot moment in a love filled life.  It really means nothing to me now and I don’t feel like that re-reading it.  I just know that in that moment, it is exactly what I felt.  I know that despite all of our positive focus, this kind of moment will probably happen again.   It is a fact that life is a balance of good and bad moments.  One cannot exist without the other.

               All the pain you cannot see           

It is difficult to explain this to friends and family.  So many times we get congratulations on doing so well.  And, the reality is that we really are doing well for having suffered such an incredible loss.  On the surface of life everything looks well enough.  We are able to live back at home.  We are able to go out into the community with friends and family.  We are making headway into Jim finding a new kind of work and purpose in life and me trying to go back to the job I loved before.

Sadly however, we have found that there is very little that can help mend a broken heart, and the fact is that both of our hearts are irreparably broken.  Broken into a thousand little pieces never to be put back together ever again.  There is nothing that can touch this pain that reaches into the bottom of our hearts and into our souls.

Why would we be broken hearted when on the surface it seems there is so much to live for?  Because you would all be right that there is so much to live for.  For each other, for our children and for all the future moments to be enjoyed.  Only a few close friends may have gotten an inkling of what our loss has been when they come to stay with us whether it’s just for an evening or for just a few days.  That’s when the true loss becomes more visible.

It's hard to explain how loss of independence results slowly in eroding who we are as a person.  For Jim whom I watch suffer through the indignities of having to be fed, of getting bed baths, of being hoisted in and out of bed etc.  Perhaps the most scarring of these experiences for both Jim (as the injured person) and me as the caregiver (I would like to say also an injured person) are the daily indignities that go along with invasive bladder and bowel routines.  Once again, only a select few have been present during this whole procedure and then it begins to dawn on them how difficult our daily lives really are despite the fact that on the surface everything appears somewhat normal.

There is nothing “normal” I assure you with having a hole drilled through your abdomen and into your bladder to allow you to pee.  There is nothing normal about a wife (or friend or attendant) having to perform deep anal digital stimulation to Jim in order to allow him to be able to empty his bowels.  There is nothing like the fear that enters our hearts when these bladder and bowel procedures do not work as they should and we have to worry about avoiding the consequences (which include rising blood pressure, stroke and possible death).  Daily, we both live in fear that something as minor as a blocked catheter can basically stop us in our tracks for an hour, a day, a week, a year or even forever.

Our hearts are broken into thousands of pieces with all the pain you cannot see.