I just got off the phone with a person at the transplant unit in the hospital. My sister has been trying to get to the bottom of why a donor workup is taking so long but they won’t talk to her due to confidentiality. So they talked to me instead. I was trying to express myself firmly without anger. The person I was speaking to said “there’s no reason to be hostile”.
How many times does a woman get this message? That we are being hostile, crazy, hysterical, bitchy etc when a man would get “assertive”? And let’s not forget emotional. As if that’s a big no no. What I want to say is: have you ever said that to a man? But of course, these are the people I’m relying on to get a transplant completed. Swallow it and move on.
But it does leave me with a sick feeling in the pit of my stomach. There’s a piece of me now asking if I was being hostile. There’s another piece of me saying I don’t deserve this treatment. Another side wondering why I’m experiencing this. What feeling is dominating? I shouldn’t have been so demanding.
I spoke with a man who had a kidney transplant several years ago and he gave me some advice: he told me to demand what I needed or I wouldn’t get it. Why is it that I feel so uncomfortable with that? That I actually feel nausea from doing just that.
I’ve been reading the book “Becoming an Ally” by Anne Bishop (see her site here: http://www.becominganally.ca/Becoming_an_Ally/Home.html) and it’s interesting to read about the various ways that we assert power over others (look to a future post for more about this book). And believe me when I tell you that I do it too (although I’m working on it!). It’s interesting too, to look at the roots of oppression in women. I think all women get it at some point – we’re supposed to be nice, lady-like, gentle, to go with the flow and let men stand for us. That’s changing I know, but it’s a slow process and part of the reason why is that women don’t always stick together. We don’t necessarily stand up for one another or speak our minds without feeling a little bad about it. We are often surprised when another woman speaks her truth bluntly without any sugar coating. Even as I write this right now I think about how others will perceive me. Will they think I’m whining? Will they think I’m just a negative person? Will they think I have anger issues? Sometimes I think all of that is true, but then I consider if someone else were reacting the same way would I think that? I don’t think I would. But I’m uncomfortable in trying to use my own personal power in a way that aids me. We need only look to the last American election to see how women of strength are perceived, so it’s no wonder it’s still hard for us to really embrace our own power.
So I ask, is it just me or are other women getting a bit fed up with being treated differently than our male counterparts for being straight up and honest – even if it might hurt a little?
I’ve been reading about Selena Gomez having a kidney transplant over the summer. Apparently the singer was rushed to hospital in May with kidney failure and “aggressively” sought a transplant. Her kidneys failed as a result of lupus, unlike mine which has been all about the kidneys. Transplant is the best treatment for kidney disease, whatever it’s form.
I have written before about the number of people who came forward to be worked up to be a possible donor for me and how amazed I’ve been by the incredible bravery, generosity and compassion I’ve been shown through this process. There’s one person who has been involved in the work up phase since November of last year. We’re 10 months in now and they haven’t finished yet. It’s been frustrating for both of us. My sister has been acting as my advocate through this time primarily because she has worked as a transplant coordinator in the past and has much more insight into how things should be moving along. I have to say I’ve been losing faith in the kidney team here in Halifax. It seems as though if I don’t get really sick they aren’t going to move on this even though everyone agrees it’s far better to undergo surgery when you are strong. We’ve come to find out why they aren’t finishing the work up: they had one doctor retire and another off sick so they are short-staffed. As if that will slowly the progression of the disease, they are putting us off. Ridiculous. Here in Canada we have free health care and that means if you can’t get treatment in your home province you can go elsewhere – as long as the doctor has requested it. So it would seem that either I need to go somewhere else or I need to go into kidney failure like Selena Gomez did. I wonder how things will go.
I’ve lost a lot of confidence in my health care team in the past couple of months as I’ve been mislead and my potential donor has been put off and patronized when asking questions. It’s been frustrating and when I cry out of frustration I’m given a referral to a psychologist rather than straight answers. As if it isn’t normal to cry when you have 9% kidney function and get overwhelmed. I swear if this were the 20’s they would say I had hysteria. How insulting. The implication that crying is somehow not normal is part of the problem in our society. We talk about coping strategies- and these are necessary- but we also need to embrace our feelings and not try to push them down every time they show up. Feeling is normal. As uncomfortable as people become with crying, it is a normal reaction to life sometimes. Being strong does not mean not feeling pain or sadness. It’s feeling it all and taking the next step anyway. It’s disconcerting that a nurse doesn’t seem to understand that.
I hope that Selena Gomez does well with her health from here on. She’s very young and being in the public eye will hopefully show others how important organ donation is. I wish her donor well too. It was incredibly brave to literally give a piece of herself to save another. I hope that she enjoys a long and beautiful life.