7. “Donate Life” is the tagline
The day that Brian was declared “brain dead” as you can imagine was an emotional one. He had been lingering for over a week and they weren’t really sure if he would ever recover. They’d call me every day and tell me they needed to try something else and I would just say yes… Really you have no idea the consequences of what they are asking you…. Can we drill into his brain, can we remove fluid from his lungs, can we put him into a medically induced coma???? You just hope what they ask is what is NEEDED to be done and you are relying on them to know…
On that Monday when I went into his room, there were several doctors who came in to greet me, and they all had “that face” and I could tell right away that what they wanted to tell me was not good. This was going to be really bad. They started to explain in medical terms everything that they had tried to address his situation…. I started to cry and I told them just to stop… to stop it all and let him go. I don’t really remember a lot of what they said after that, but I felt so awful and guilty for not taking better care of him and questioning all of the decisions that I had made - was it the right thing to do? Did I not try hard enough? Did I not advocate in the right way for him to get better. I called a friend of mine to go pick up Ian from summer school to bring him here because I didn’t wanna leave Brian and I knew I wouldn’t be able to drive. Shortly thereafter the doctor came in with a gentleman named Patrick and Patrick asked me to step aside to another room. I thought this was medical stuff but as soon as we all sat down, he put a box of Kleenex on the table and pulled out a file. He slid over to me a picture of Brian‘s drivers license and the form that they pulled up out of a computer to let me know that Brian was a donor and they were now cashing in their chips. They started the conversation by telling me that Brian had made this choice and that there was really nothing I could do about it. That legally they were entitled and they just wanted to let me know. I knew Brian was an organ donor, I was an organ donor. And with their overly sad and sentimental tones they begin to explain to me that they would need to reach out to people to set up and plan the recipient’s surgeries. This will take a few days, they told me, and with that in mind they would be keeping Brian breathing and his heart beating on machines until all of these things were organized. I get it, but I just never thought that would be the way it would go. You see this in the movies and its all so immediate and automatic…. There is a rush to get the organs… You just don’t imagine this will take days… Days of your person lingering and becoming a commodity. When Ian came to the room he knew by my face, but I had to tell my child his father had died. We cried, we sat with Brian for a few hours and then went home. The next day Ian wanted to come back and sit with his father again and the day after that. The person I was working with at the Donor Network really tried to make it sound like he was my partner in navigating all of this and deeply understood my pain and always talked about Brian‘s gift and sacrifice and the generosity of Brian to do this. I kept thinking if Brian had choice to be brain dead and donate his organs and be generous or be alive and be with us, with his son, that he would’ve taken the second option. They also made it quite clear, as gently but firmly as possible, that Brian had made this donation by checking the donor box and there was absolutely really nothing I could do, they were really just informing me and taking me along on this journey. I understood the rules, so to speak, and yet with all that my contact continued to call me everyday to ask me if they could have something else of his to the point where in one of the conversations I asked him “is this a fire sale? It just feels like you’re piecing him out.” If Brian‘s donation was a foregone conclusion and I had no say why did they keep having to call me and ask me if they could take this, that, or the other? The worst was when Ian and I were in the hospital room when a team of doctors came in and promptly announce that Ian and I had to leave because they needed to take a biopsy of Brian’s lung to see if it was viable. We could stand in the hall if we liked… but they really didn’t seem to have a care for our feelings. Did they understand what they just asked us? Let me stand in the hall while you reach down his throat and pull out a piece of his lung. No, that doesn’t distress me at all.
They put a ben’s bell chime over Brian‘s door and every time someone from the hospital staff came in they would ting it. They explained to me that this was to honor him and his sacrifice. To me that bell was a heralding cry to the whole floor that Brian was dead, and everybody in the ward should know. It was awful.
The other disturbing fallout from my relationship with the AZ Donor Network was their desire to communicate to me, all of the ins and outs of where all of Brian‘s pieces went. I told them I did not want to know. I did not want to know anything, and even on their little form that said, “would you like to know?” I opted out. I did not want to know how he was parceled out. I did not want to know where all of his pieces went. I preferred to live in oblivion to the details of all of that yet they continued to want to tell me. They sent me letters and updates. I don’t understand what part of Don’t. Tell. Me. they did not hear. And within that first year they also sent me a thank you note from someone who had received some thing of Brian‘s.
If the constant reminding and telling me things I don’t want to know is your process anyway then don’t give me the option of begging you not tell me.
After Brian‘s surgery… the very next day, I removed myself from theAZ Donor Network. I may one day put myself back on it, but I did not want my my 15 year old son to possibly have to go through the same thing I went through. To have him have to make decisions about whether or not they could take my tissue, my eyes…is it all right to take my bone marrow for testing and educational purposes… can they graph my skin for a research project…
I just couldn’t take the chance of having him have to do that.
All in all, I did not feel that what we went through, losing Brian and having to delaying his end was really what they were most focused on. And I get those who may have received something from Brian were and are important to their loved ones. But we were the losers in this game. I wished we felt that was important to those in the network.
Brian was more than his “sacrifice”. To us he was a dad, a lover, a partner, a friend, a coworker, a brother, a son, and so much more.
And all we got was a bell.
