This is an email that I received from Anne. My response to her is below:
I've commented on your blog a few times as Spendsister, but reading your post today I felt a private email might be more suitable.
Coni, you need to get your shit together. Excuse my bluntness, but you are a mess and you are seemingly oblivious to the consequences. You can joke and make funny snappy comebacks but it is way past the time for you to get serious. This is your life at stake. Not a missed stitch, not a lost house, not an asshole sister - your life. Does anything else even matter? Or come close? Stop calling your port by a silly little name. It is not a silly little personality, it's a medical intervention to help save your life. It doesn't have moods or feelings, if it's hurting, something is wrong, fix it and move on with your treatments.
You know, I love your blog. I see a lot of myself in you. But right now I am upset with you because you aren't being careful enough. How on earth can you be stitching with your arm as messed up as it is? Girl, you haven't stitched in MONTHS! I mean MONTHS! Why are you insisting on doing it now with an arm all bruised and swollen? Read a damn book! You read books, right?
I think the comment someone made that perhaps you were not quite as ready to accept dialysis as you thought hit the big ol' nail on the big ol' head. I couldn't figure out why you didn't start dialysis months ago, get into it before there was more deterioration, before you couldn't get out of bed - I couldn't understand why you were so stubborn about resisting something that would actually help you (again, there's a lot of me in that sentence). Well, your blog today hit me right between the eyes.
You're still looking for someone to blame. To give you an excuse not to face dialysis. Today it was "buzzy" being "bad". It wasn't enough that you deliberately BENT YOUR ELBOW during treatment? You had to continue to irritate the hell out of it stitching last night? Before that it was your sister not making a decision. Excuse me, but isn't your life YOUR freakin' decision?
Somewhere along the way, you decided that a quick and clean transplant from a perfectly matched sibling was a hell of a lot easier than long term dialysis for the rest of your life tethering you ( literally) to a chair 3 times a week. Of course it is. If she matched. If you didn't reject it. If she was healthy enough to give up a kidney. Even with all those ifs, you decided that's what you wanted. But you didn't get what you wanted. Life's funny that way, isn't it?
So now you're doing your best to sabotage dialysis. See? It doesn't work. I can't do it. I tried. Except, as some famous guy said, Failure is not an option. At least not for you right now.
When I had stage 3B breast cancer, people kept asking me how I stayed so calm. Why aren't you freaking out? Why aren't you hysterical? Why aren't you crying? Well I did all those things. Then I said ok, that didn't help. I still have cancer. So I stopped all that, and found out what I needed to do, because I did know that this was NOT what's going to kill me.
And then (and this was the hard part) I did it. No one did it for me. I couldn't cry or whine or buy my way out of it. My parents, my siblings, my friends, my enemies, could. not. do. it. for. me. I was alone at that wall and had to get over it all by myself.
Put your big girl pants on and start climbing, Coni. You've got a long way to go. Only you know if you've got what it takes.
Sent from my iPad
Wow. What a note. Thank you for writing it. First, let me say Happy New Year. I confess that this hit me square in the solar plexis, and at first I was a little winded but now I've got my wits about me a bit and I'd like to respond...thoughtfully.
My blog and the "character" of The Spinster Stitcher are just that....a blog and a character. I started wrtiting it as a means to re-engage with a particular corner of the world, because I was a new stitcher and had just spent the better part of several long years inside my house battling some pretty horrific demons.
At first, the character was jusr a portly, hapless, dog-loving oaf who bumblefucked her way through a funny little life. The comments from readers were light-hearted and esoteric and about simple easy things, and I used the blog, a talking dog wearing a smoking jacket, and a cast of other goofy characters to escape into a little fantasy world.
Over the course of the last few years, though, I've ventured into unknown territory a bit by talking about (often making fun of) the big hard things going on around me. Foreclosure, financial ruin, the loss of my sister, Stewey's illness and death, and then finally, my own poor health....all big hard things that are insanely difficult, unpleasant, and challenging to be sure.
The Spinster Stitcher deals with this things with a squirting flower, big floppy shoes, and a lot of exaggeration and self-deprocation. She kind of stumbles and giggles and ends up floundering her way through this life of ours because it makes for a much better story than does that cold hard reality.
My emails are now filled with notes from friends across the world that reveal big hard things in their own lives. What started as a light-hearted attempt to be in the community has now become (in my head, anyway) a very serious responsibility. I feel compelled to issue forth with humor and wit and sarcasm and fantasy as a means of assuring myself and others that we're going to be OK and that we've got a soft place to fall in each other's company.
But, your note tells me that it's now important that you know a bit of the ugly truth. Let me first say that I'm sorry if you feel let down or frustrated with me and my response to dialysis. Here, therefore, is the real truth wih the hope that it will assure you that I am not, as you say, a mess.
From the time of diagnosis, I have been a ridiculously informed, compliant, amd determined patient. Like all kidney patients, I have managed an enormous flow chart of possible pathways that would lead to a long, healthy, productive, happy life.
The most positive outcome for me would have been a pre-emptive transplant from my sister. To that end, I spent the bette part of two years working very hard to accomplish this. I was given an intensive and long list of things to complete to get ready, and I did so. With some complaining and fuss, I will admit, but nonethess I did so and looked forward to that pathway.
My team and I made the decision to postpone dialysis as long as we did because that was the best decision medically. Period. It was never and will never be within my thought process to just ignore it or put it off because it was going to be scary or inconvenient or anything else for that matter. Dialysis was always the last and least desirable resort.
Now that it's here, I chose to blog about it by naming the fistula Buzzy and by taking what has been a scary, painful, miserable few weeks into a place where I could sprinkle a bit of glitter on it and make lemonade. The first session was overwhelming, to be sure, but the second (in which I infiltrated) was horrific. For the record...the infiltration happened because I instinctively bent my arm to get more comfortable in the chair. The subsequent fistulagram, angioplasty, and stent were probably more extreme than was necessary, but again, my team and I are approaching this with caution and the very best medical advice available.
I'm not sure if I can convince you or not, and to be honest, I don't know if I am actually required to, but I promise you that I have my big girl panties firmly in place and that I am handling this entire situation with as mich grace, dignity, courage, and intelligence that I can muster.
The Spinster Stitcher is whining about not being able to stitch or bend her arm for eighteen hours a week. She's also missing her little dog and mourning the loss of her dream house...wrenching her guts over her sister, and swooning over the entry of a man into her world. She's still cluess, but loveable...hopeful and happy...but more than anything...profoundly grateful that she has a place to exist and make a small dofference in the world.
Coni Rich is fifty-one year old end stage renal patient who is in the initial stages of dialysis. She is calm, measured, careful, and extremely capable of handling whatever comes at her. She has been through wars much bigger than this and come out of them dented but detemined. She's pretty fierce and can be a major major bitch, but she is, if nothing else, a bull-headed fighter that knows when to show up.
My wish for you, dear Anne, is that you will have a wonderful New Year. Thank you again for your note. I hope that your corner of the world is swell and that you'll continue to be part of my own little corner of it. That, is, after all, what it's all about.
With mich love,
The Spinster Stitcher