After continued flirtations with death, multiple surgeries, and lengthy hospital stays, there came a point when Petey was stable and recovered enough to come home for good.
And the life which we’d known before his illness was gone forever.
The months-long fight to stay alive had taken a toll. His strength was such that returning to nursing, or any type of work was now impossible—the simple effort of bathing and dressing exhausts him like twelve hours of nursing used to.
Petey had to come to terms with the fact that his life had become something he didn’t recognize, and never wanted. He was forced to deal with the anger and shame of being “the invalid”. He was a carer that now needed someone to care for him.
It wasn’t an easy transition, not for any member of the Matthews Family Band.
The Kid existed in a constant state of terror. But my stoic child presented to the world both a face and demeanor carved from stone because loss of control meant a volcano of embarrassing and unwanted emotion would crash down in a never-ending pyroclastic flow of feelings.
I coped by indulging in a form of optimism so extreme as to almost be magical thinking; rejecting facts and the situation at hand and substituting a belief that absolutely everything would be fixed by the coming treatment/surgery/medicine/doctor, and our former lives would be restored to us.
When things were too precarious for even my almost hysterical optimism, I would go to my fallback position; numbness.
When no one with an MD could offer any hope, and returning to that empty house every day made me think I’d die from fear, stress, and loneliness, I’d shut down.
I’d do and say the appropriate things, but for days at a time, nothing penetrated and I sleepwalked through life.
It was while living within this continuous crisis that friends and family stepped up or let us down.
My parents? They burned up the highway between Greensboro and Duke. They visited almost every day and came in with Starbucks, took us out of the hospital for meals, never left without slipping cash into our pockets, and always presented a stout shoulder and unwavering encouragement.
Other relatives treated Petey’s illness as a personal affront. They demanded we manage and massage their feelings about the situation. They offered nothing positive and always had a carefully curated reason why they once again were unable to make a visit to the hospital.
We had friends that carried us away for a respite from HospitalWorld. They would tease, cajole, and fill us with what, during that dark time, passed for happiness.
And we had people with lots of thoughts and prayers, but very little else. One neighbor asked me daily if I needed anything. I hesitated, but finally weeks into our hellish ordeal I asked him to clean up a few piles from our dog because I was never home during daylight hours so was unable to. He declined.
But the very next day he asked again if he could do anything to help me out.
Thanks but no thanks.
Our lives aren’t the lives we inhabited before the illness. This is our normal now and we’ve had to accept that. Is it the life we would have chosen for ourselves?
Not a chance.
But Petey’s still home and is currently sitting on the couch next to me. And though we have tough patches, every day I hear his laugh that sounds like warm caramel and see the same twinkle of mischief in his eyes that I fell in love with thirty-eight years ago.
Thanks for your time.
Contact debbie at firstname.lastname@example.org.