The Final Season…

Let me first thank those who made donations in response to my appeal for support of the Erdheim-Chester Global Alliance. I’ve been provided with few details in respect for the request for anonymity, but let me assure you that the generosity is much appreciated.

My “The Big C” marathon a few days ago? I’m grateful that I was mistaken in that it was only four hours, not eight. I don’t think I could have handled more, I doubt there was a tear left in me to cry out. In the first half hour alone I hit pause three times to give me time to deal with my feelings about the storyline.

What did I get from the final season? A somewhat diminished feeling of isolation, yet at the same time very much a heightened one. It sounds contradictory I know.

I could identify very closely with Laura Linney’s character and the ordeals she faced, it was astounding just how many correlations there were to my own life. It felt like the writers had crawled into my head, it was more than disconcerting to watch what felt like my own life unfolding. Or perhaps more accurately, folding.

I cried uncontrollably when the main character was acknowledging the utter sadness of what she will miss in her child’s life. With that came the reminders of my fears about who will be there for my daughter when I’m gone, when so many seem to have difficulty being around our situation while I’m still here. My disease may not be contagious, but I suspect that the fear of death just might be.

The hardest part of watching the end of the series was how prolonged the dying process was for Cathy Jamison. She would be in a great deal of discomfort and pain, looking like it was close to the end – yet two months, four months, six months later she’d still be hanging in.

Even when Cathy decided that she no longer wished to continue treatment, that she was in every way ready to let go her body still didn’t release her. I don’t think that anyone who isn’t living this scenario can understand the mental fatigue that comes with living like this.

For those of you who might be thinking, geez – Sandy’s still here? I thought that her prognosis was supposed to have her on her way out quite a while ago? 

It’s not for lack of letting go. Although I sobbed harder than I have in a very long time at the final scene (if you know my family situation you’ll understand why it was a heartbreaker for me), knowing that everyone close to Cathy could finally pull out of the limbo that they’d been in for years brought to me a sigh of relief.

We have to do better going forward for our dying. Although Cathy had advocates in her husband and brother and I’m doing the legwork  (oh dear, there’s a terrible pun) myself, she, like me, ran into brick wall after brick wall with bureaucracy and others’ fears of bending the rules in the name of compassion. Truly, we must do much better than this.

P.S. I don’t often ask for well wishes and prayers, but I’m asking for them tonight to help get Suzanna (and everyone else affected)  home safely (or to a dry location). Her first ever drive into Toronto turned into quite an adventure thanks to the weather. Flooded roads and widespread power outages (cars submerged and floating away nearby, thousands of people stranded across the city). Suz – your reasons for going tonight will make your memories of this evening all that more poignant. Swim my angel, swim.