James' health is critical, but for now, James is also stable. What does stability mean in the ICU on life support? This is a contradiction. It is almost cruel to suggest that James is stable. It seems to deny the truth. That is, I am all too aware of the fact the James would not be alive without the support of ECMO. I write about his improvements, but I feel as though I am lying to myself.
A dear friend, also in a precarious health situation with her post-transplant husband, knows exactly the sentiment: We are always awaiting the next critical shift. We sleep in wait for the phone to ring. We know that transplant is not a cure. Those illusions of post-transplant health are gone. It is an exchange of one set of problems for another (with the same potential for morbidity and mortality).
These are not the outcomes of discussion. We don't speak about the fatalities. We dance around with a language of hope and strength. I understand that this is essential for survival. We don't want to imagine the worse. We cannot allow ourselves to imagine the worse. At the same time, I think it is important to be honest and open (with ourselves, and with each other). We are in a serious situation.
It's probably a conversation to be had with someone who has been in something close to this situation, when the conversation is ready to be had. The conversation would be very stark, and you'd probably need a lot of tissues. There's no right or wrong way to get through this trial, dear Adena. As prepared as you want or don't want to be, things are going to happen outside of anyone's control. Do what you can, and have faith that it was enough. But keep talking, don't shut down, even if you repeat yourself. You will find the right people to buoy your heart and calm the mind. Keep talking. Love love love to you both.
ReplyDeleteThank you, Gin. It does feel as though I am repeating myself, and there are only so many ways to express the fear and sadness, while also trying to remain strong and positive all the time. It is hard to find the right words, and I rarely feel articulate. I love to write, but I need to be able to be honest. I suppose there is a balance there. Thank you for your kindness and reassurance. Love. Love. Love.
DeleteRepeat yourself as much as you need to, your blog won't mind, and I daresay neither will your readers. Even knowing that all is quiet and that you're still waiting is a powerful boost to all who are watching and praying right with you. He is still there. There is still hope. We still love love love.
DeleteI have this silly hope that won't leave me, that he'll be able to walk out of there (even if hospital policy is for him to be in a wheelchair, hehe). I hope he leaves that way, and not the other way. :)
(I subscribed as soon as Heather mentioned your photo shoot. I've read her since before she got married, and she's such an amazing person. It's through her that I met Eva Markvoort, and now you and James. Hi!) :)