Reply To: Accepted? Or Tolerated?


I have been teaching stroke recovery for 15 years, following my own stroke 18 years ago.   I teach both survivors and caregivers.  I agree.  There is a lot of need for education for everyone.  As we ask for empathy, it’s important to remember that the caregivers and family members are suffering too.  Empathy and understanding goes both ways.   And for families there is a lot of fear and resentment.   Fear that if this has happened to us, it could happen to them.  This fear is so deep in most people that it’s never examined.   Daniel’s example of taking the son to the country origin of his father is very apt.   It’s as if once we have experienced a stroke, we have entered a foreign country.   The common references no longer match.  The common reference of tying a shoe that everyone understands, has changed and maybe changed dramatically.  There is no way for the caregiver to truly understand how this common reference has changed.  You cannot explain it to them.  Not having experienced it, their mind/body/spirits have no way to feel what it is like.  Putting on a glove, or tying the hand behind the back is one way that this is approximated.   But even that is only an approximation.  And it is true that unless we have been a caregiver of someone with a neurological injury we also cannot know what that experience is like.What we can do is start by acknowledging that everyone in the situation is struggling and learn to listen to one another with our hearts as well as with our ears.  When we open in that kind of empathy, with a willingness to admit that we do not know what anyone else is experiencing and remember that all of us are doing our best and all of us just want to be happy and at ease, we can hold one another with greater care.  This takes a lot of practice and patience but it’s doable.Alison