From The Outside In

This last two weeks seems to have taken on a whole new face in the caregiver lives of Sam.  This blog was to be about Sam and her disease but we seem to be at a point that writing to this blog about us is a therapy that we get so little of.  I am certain, as always, that this spell will pass as we yank ourselves up again.  Bare with us as we give a view from our side looking in.  It may just be the added stresses of the fact three out of four of us are also college students and are in our finals week for this semester.  Maybe we too are just as overwhelmed as Sam is.  The purpose of this blog was to enlighten, in frankness, all aspects of the world of Shy-Drager, MSA.  This is the other side.

This is a darker time in our care of Sam, feeling like we are being bombarded with life.  Our view is clouded with all the new developments and new aspects of this disease we are seeing.  We are at a point that we are beginning to question ourselves and our motives.  We are here to assist Sam, to help her through her life as normal as can be in light of the situation and all this disease brings.  I am not certain when this all started but it seems it began with this last hospital stay.  We are tired, yet we feel guilty for being tired.  We feel guilty that we are full of life and mobility and it is Sam that is dealt this terrible blow, not us.  So why do we feel so out of sorts?  Is it the light we so enjoyed in Sam's eyes has began to fade?  Is it just that we are no longer just a companion, daughter, son, husband but officially full blown care-givers that sometimes has to be firm and fully medically educated on the disease?  Is it the darkness that we see more and more often is beginning to blind our vision of the sun ever shining again?  It is so hard to say what it might be, but we are there, we are depressed and feeling guilty and at a storm point with our emotions.  Like we have said before, our prayers changed one day.  The day that we knew there was no return from this horrible monster that has taken the life out of our friend, mother and wife....the day we pray for mercy instead of hope. 

No words can describe to anyone else looking into our world how bad it feels as a normal human to watch something so traumatic happening in a dearly loved ones life when there is no hope.  We as humans live for hope, hope of another day, hope of a child's laughter, hope of dreams.  Without hope, we simply fail to dream or see the light again.  We know it is not fair to feel the way we do, that our focus should be on Sam and making things good for her.  No matter that fact, we do feel just that, hopeless and alone.  In this all, there truly is just three of us, the caregivers, as one really is clueless and is there just to make sure she doesn't fall or get hurt.  The other three of us live her life, have intertwined her life so deeply into ours that we no longer can tell where her life and illness ends and our lives and wellness starts.  This all may sound horrible to those that don't understand or who have never been there but it isn't horrible really.  Sam starts to feel that she is a burden to us, that is not what we intend nor what we are saying, she is very far from a burden, she is our love.  We have just become tired and weary of it all and we are having a difficult time encouraging her when we are loosing our own courage.  We wouldn't give up this time with Sam for the world.  It is our own thoughts and feelings of helplessness that is our burden.  Our own feeling of inadequacy after this last year.  Where our efforts only see decline.  This disease affects so many more than the patient, although the patient gets the worse end of it, it does affect us.  It goes against all natures of us human in survival modes. 

As the care-givers fight our own fight or flight emotions, our fights begin to seem to be futile.  We will never take flight without Sam, that is not who we are.  Just our battles are becoming overwhelming.  From the outside looking in, the glass is becoming clouded and covered with our tears that fall like rain.  Sam said it best when she said sometimes we cry in the shower to wash away the pain where no one can hear.  So we emerge, with smiling faces, like a mask to guard our true dark currents that flow beneath.