I know.
I know that it’s OK that I’m angry right now. I know that I deserve to be angry, that I deserve to have so much anger that I can taste it at the back of my throat and hear it throughout the day. I know it’s allowed for me to feel completely resentful and rageful. I know I’ve earned every bit of irateness and hostility I feel, whether I want to feel it or not.
I know.
The thing is, I don’t want to feel these things. I don’t like feeling so completely full of such negativity. It seems such a waste of energy and time, and I would rather find some positive direction to channel this all.
And just as soon as I figure out how to do so, I’ll be all over that.
In the meantime I am stuck squarely in the “Anger” stage of Kübler-Ross’ model of grief. Knowing I have suffered a tremendous loss, in fact many of them in many different directions, and that the grief I am experiencing for each of those is righteous and well-earned… doesn’t help in the tiniest bit. The denial phase, which I skittered through while still in Mass General Hospital and which largely consisted of me really having absolutely no idea how dangerous my illness was, how profound and permanent some of my physical changes are… that phase was far too short. I would like, very much, to go back to as high a level of cluelessness as possible, for as long as possible.
I don’t want to go all the way back to the coma, because that has resulted in a tenuous hold on some of my very favorite toes (those would be the ones attached to my body) and a nasty case of thrush. And I don’t want to be in those first, earliest days of semi-consciousness, because I am not a girl who does well with sedation or restraint. Really, the ICU days were such a combination of physical discomfort and complete mental indignity (not at all on the part of the staff; they were wonderful. It was me who struggled against things like bedpans and whole-body lift mechanisms to get me out of bed) that I don’t want to go back there for any reason.
But the following week, I was still in MGH but on the surgical-gynecological floor. I spent a fair amount of time alone, in the hospital bed, but I had lots of visitors and the staff continued to be wonderful. And people were happy to tiptoe around what had brought me there, and they allowed visits by all three kids. That was all good with me.
Now I’m in a rehab facility. They mean well here, I’m certain. But I have become, in the eyes of many of the staff, a lump in the bed that creates output or absorbs input. How many pills has the lump taken today? How many grams of protein has it ingested?
And they’re blunt, all of the staff. Just how sick I was, just how close to death. Just how nasty all of the germs and bacteria many of the patients here have had. Why it is there are no babies allowed on this floor, at all, ever… and I’m not even on the really sick floor with the the really complicated cases.
I get all that. I do. And I appreciate even why it is they need to reduce me to a lump in a bed instead of a person; I happen to be 32 with – maybe, possibly, rumor has it – a lot of life left ahead of me. I’m by far the youngest puppy here, and they have to hold onto their habit of not getting attached, or work would become one long series of personal losses.
And I’m grateful to have my own room, and I’m holding on for the day I can go home, because maybe then – just maybe – I will start to develop some vague, faint memory of myself and what it feels like to be me. Right now, I have no idea. I just know that I have more anger than I know how to process – freeform, amorphous anger, directed at no one and everyone. And I have Why Me, in even larger quantities, because I lived, until a month ago, in a world where medicine and illness and health made some sense. You didn’t wash your hands, you picked up a germ, you got sick. I don’t live in that Middle Ages mindset whereby random evil spirits choose a random unsuspecting person and visited random wrath upon them; people get very sick for a reason, usually because they are already open to infection and then along comes that opportunistic infection, they get sick, and then they either get better or they don’t.
None of that quite feels like it holds for me, and so I’ve been sinking farther and farther into the why-me hole. Bathing in anger. Crying because if I don’t I might just burst. And I want to give up, somehow. I want to stop feeling like this; I want to feel better, and if I can’t feel better than I want to stop feeling altogether. But I can’t figure out how to give up (and before your alarms start screaming, I can promise with full faith and certainty that I would never, ever hurt or kill myself; there are too many reasons why not to list them, but they’re there and they’re firm and I’m physically out of the woods in that way, too, not just in terms of not needing antibiotics anymore). I just can’t figure out how to lay this load down and walk away from it; the anger and the self-righteousness and the why-me and the no-fair just keeps getting heavier and heavier and I can’t set it down for a while.
One More Thing 
Huge hugs, Kate! Stay strong. You will be home before you know it! You are such an amazing person!
By: Kayla on April 1, 2010
at 12:00 am
Yeah, there is NO passive “acceptance” for this. It may be easier for those with huge, blind, accepting faith…but I doubt it.
That being said, there’s a couple of concrete ideas to help the way you feel: first of all, whatever medication you were on before may not be the right one for you now…but you need something to help your chemical composition as it’s been so profoundly altered by the experience itself and your own (actually quite healthy) response to it.
Second of all, I do hope that they have started the estrogen replacement. It will help with healing in oh-so-many ways. It may take a higher dose than they start with, which would not be a bad thing right now, to keep going until you get to an appropriate level.
Also, rehab is supposed to include psychotherapy. If you can write a blog post, you can see a therapist…is there one who can come from the outside, or one on staff with whom you can talk? That HAS to be part of your rehab process, especially for you, and something more than just “yes, you have a perfectly valid reason for being angry.”
And, if you’re physiologically stable, WHY can’t they give you an hour pass to go wherever, even if it’s just out to the car to see Isaac? It saddens me to hear the way their treatment leaves you feeling. Those of us who are good at what we do actually DO get attached to certain patients, even though they may come and go. The impersonal nature of your treatment the way you describe it is heart-breaking and NOT the definition of true rehabilitation. Most of the rehab therapists I’ve had the privilege of working with are very, very caring and personally “enrolled” in supported their patients to a whole, healthier life, not the type of caregiver who leaves their patients feeling reduced to a “lump in bed 455.”
Obviously medications are not the whole answer. But it’s time to try to find some combination to help your brain chemistry re-calibrate itself from pain, anger, and sorrow.
Again hugs go out to you, and you’ve always had our prayers,
~ Audrey
By: Audrey S. on April 1, 2010
at 12:06 am
Words simply are not enough. Your post moved me to tears and just reinforced to me that geography bites.
I love you friend.
By: Kim on April 1, 2010
at 12:07 am
*SIGH* Brutally honest? In my experiences it gets bad REALLY REALLY bad then it gets better, then it gets bad again and then even better, then a bit bad once more and then better yet ON and ON and ON. It is a constant 2-step, or 3-step thing. Granted nothing happen to me but I think my wrath was pretty bad because it happened to my child. “”Hell knows no fury like a woman scorn-unless you screw with her child.” That all said it takes time more time than you can imagine and one day you think back and you realize the anger it isn’t what it what-you may even forget how angry you are now. It is so complicated but simple at the same time. (I hope I make sense.)
You are still hurt by the things/times that were taken away-I still resent much of that, because those were stolen from you regardless but you fill those places with other things and eventually move on. As much as you hate being where you are emotionally you are where you probably need to be to move forward.
I can again ask my friend who delivered at MGH who she saw if you are interested? I sent you the info last fall but I am sure she will send it to me again if you need it.
As you know you are loved deeply by so many those you know and those you don’t and we want to see you conquer all of this and get home too.
Climb those 2 flights of stairs, carry that 10 pounds and get those ADLs done, I know you will just give all of you time to heal.
GREAT BIG MUSHY HUGS! from ME
By: Destiny on April 1, 2010
at 12:10 am
I wish I didn’t but I know how you feel. Not physically except after Brennie was dx’ed with a recessive genetic disease, I felt my body was tainted, evil to a point and I knew there would never be another baby from my body.
It took me over 10 years to work through all the psychological fallout of watching my son die, knowing my body would never be pregnant again, the PTSD of compressing 5 months of extreme stress, grief, fright, etc. The extreme grief of a future unfulfilled.
You have a right and a need to be angry. You know it may fade and then return. If it makes you feel any better I am furious at what happened to you particularly the fact you cannot be with your newborn.
I’m here if you ever need me.
Love always coming your way from Seattle.
By: JaniceNW on April 1, 2010
at 12:20 am
Why do people devalue anger, especially one that’s pure and strong?? A good, solid feeling of anger is just as valid an emotion as happiness, elation, or anything else. Anger is NOT a negative emotion. Rage and bitterness are.
And it’s a workable one too. A great injustice was done to you, one that wracked your mind, your body, and took you away from the ONE thing that was your life support: your family. And nearly took your life. Oh, you bet anger is coming hard and fast and totally justifiable.
Don’t be ashamed of it or try to rationalise it away. I think that’s what’s bugging you, that you’re feeling guilty for being SO angry. Yeah, some of it could be hormones, but I think you’re the sort who can pull herself from her mind and look at things rationally. Rely on the logic your mind has, think it through, and you’ll come to the right conclusion.
It also sounds like you’re being treated as though it was your fault you’re in rehab. Can you talk to a ward admin or head nurse or something about the arms-length attitude they seem to have? You’re NOT patient #446-2 in Bed 3 who’s lived a life of rack and ruin and is now paying the piper. This is not something you did, it was something done TO you. They need to be reminded of that, possibly every day.
Yeah, I can see if from their point, but they’re in a healing profession which includes mind and body…any medico worth their salt knows that the sounder the mind, the faster the body heals.
I’ll keep saying prayers for you, Kate, and sis is still chiming in too. We’re both very stubborn women and don’t let God rest till we get answers, but then again, He made us that way, so He shouldn’t be too surprised…
By: Yorkie on April 1, 2010
at 2:03 am
I have never had the experience of being treated as a medical case, manhandled and unable to do even the most basic things with dignity. My sister has — she had major hip surgery and couldn’t do anything for herself for the first couple of weeks after. I remember how sad and frustrated she was, and I hope you can get back to feeling like a human being with dignity again. You’re still a person in there, one we happen to care about. Hang in there.
By: Batty on April 1, 2010
at 6:44 am
Kate, I’m so sorry. I’m just sitting here trying to think of something comforting, something useful to help. You are in a place that sucks and well, you know it. I have been thinking about you every day, thinking about your age in that rehab facility, remembering my dad in his rehab facility last winter and he was the young’en (at double your age) and it just sucks. But you will get through, I know you will this phase is awful and your anger is thoroughly justified but unfortunately that doesn’t make it feel better. You are a seriously tough chick though, I thought that before this and I know it even more now. You will get through this, the emotional and the physical. Loads of hugs and warm thoughts and I’m here if I can help.
By: Missy on April 1, 2010
at 7:09 am
You knew I would chime in with the hippie-crunchy, airy-fairy response, right? 😉
Be where you are. Just keep breathing. Feel as much of this as you can stand to now, because the universe always gives you a choice: deal with it now, or deal with it later. There’s enough that’ll come later all on its own. Deal with what’s present. There are no good feelings, there are no bad feelings. Feel everything. The harder you try to push it away, the more stubbornly it will cling. It’ll go. And you know this already, of course. This is part of it.
In the meantime, I wish I was closer by. (did you get my texts earlier in the week?) You know my charming wit and presence would either lift your spirits or irritate the hell out of you long enough to take your mind off things for a bit. 😛
By: bluecanary on April 1, 2010
at 7:13 am
Anger is a strong energy and a necessary step to get through the grieving process. I know you know that, but you just don’t like it. You can’t skip this step and the longer you fight it, the longer it will last.
So, allow yourself to feel it. It’s OK to feel angry. It’s OK to tell the anger that you do not like spending time with it. It’s even OK to be angry that you’re angry. Have it out with your anger as if it is a person in the room. Let it know that you will spend time with it but you have other priorities and will not allow it to consume ALL of your time. When you duke it out, I’m positive you will come out on top. You are much, much stronger than you think.
And the “why me” moments are borderline depressive times. That’s good. It means you’re moving through the stages. Don’t fight it – let it wash over you. Cry it out until you cannot cry anymore.
It’s going to be a tough road to acceptance, but you’ll get there. You will.
((hugs))
By: Ashlie- Mommycosm on April 1, 2010
at 7:19 am
I’m even angry on your behalf! But, I know you won’t let the anger win – you’re too strong for that. I’m still praying for you, for a speedy recovery and to get home where you belong. {{{Hugs}}}
By: EvilTwinsWife on April 1, 2010
at 7:23 am
We can’t go over it,
we can’t go under it,
we can’t go around it,
we’ll have to go through it.
Your ‘bear hunt’ sucks.
I wish we could share in the pain and the anger, help absorb some of it away from you, but all we can do it let you know every day that we are here to listen when you need to talk or write. Tread the waters of anger until you can wade out of them.
By: Sara on April 1, 2010
at 7:35 am
Hey,
I am so sorry to hear all the news. I can’t believe all you have been through and I am sure there is only a portion I have read about. The truth is we have no answers to all the questions of why, but the fact remains you continue to be strong. I can see it with all that you have endured. Just keep that strength up for you and your family. I agree with Kim above that ” Your post moved me to tears and just reinforced to me that geography bites.”
Thoughts are with you all… L&J
By: Laurie Rock on April 1, 2010
at 7:50 am
The loss you suffered may not have been the death of a loved one, but it is a loss and you do have to grieve. I know all about THAT one!
A couple of things I learned about grieving:
1. There is no “right or wrong” way to do so, there is only YOUR way.
2. Grieving takes time – but things do get better.
3. Don’t let ANYONE tell you that you should be “over” it by now (whether that’s a month or a year from now)
4. One day, you will laugh and look around and realize it was your own laughter you heard – then you will know you are on your way.
So, there you have it – this is my life experience with grief and I hope it helps you.
Linda
By: Linda on April 1, 2010
at 7:57 am
I know you know.
It still sucks. And it’s going to keep sucking, and may even keep getting bigger, until you’re home. And then it might even suck more for a little while, but then it will suck a little less.
But at least you’ll be home. And have some wonderfulness to distract from the sucking.
By: BeThisWay on April 1, 2010
at 7:59 am
Ah, Kate. It takes a long, long time to come to terms with this stuff. It’s been 8 years for me and I’m just now dealing with what I hope to be the last of it.
The hopelessness will subside; I can’t promise about the anger. I can’t say when, but it will. The healing process, physically and mentally, is slow for a reason that I don’t understand. Perhaps because it rebuilds us as a different person at an intrinsic level, because I certainly am.
Keeping you in my thoughts.
Dave
By: dbennett on April 1, 2010
at 8:54 am
Only thing I can think to say is as long as it takes, as angry as you get, I’ll be here reading and cheering you on, because that’s the only thing I have to give.
By: Erin on April 1, 2010
at 8:57 am
Keep fighting. Your situation sucks, no doubt, but keep fighting, be pissed and do whatever it takes to keep your spirit alive.
It may seem like forever, but you’ll get home. Hugs.
By: Fairly Odd Mother on April 1, 2010
at 9:10 am
Hugs. I am reading and thinking of you every day.
By: LeeAnne on April 1, 2010
at 9:26 am
Hi Kate,
What Yorkie said. She knows and she’s right. I’m so sorry that you’re having to go through this.
You continue to be in my thoughts every day.
Helen (helsbels)
By: Helsbels on April 1, 2010
at 9:58 am
Hi Kate,
I have not commented in a long time, I was so upset to read about all you have been through (but so very bad at knowing what to say, I did not know what to say so I said nothing, which is the worst thing to do). So after reading your latest I knew I had to write, something, anything, to let you know that someone else on your long list of someone’s is thinking about you and sending all the positive thoughts I have your way! I have read your blog for sometime and if there is one thing I have learned about you it is that you are resilient. You handle things with far more grace than you give yourself credit for. You are stuck because you know how you want to feel but you can not get there, and as my therapist always reminds me “be gentle with yourself” you will get through this it may just take more time than you want it to. Things can change so quickly in life as you have learned lately for the worse but it can work in the reverse manner and change for the better when we least expect it. You are a great woman and you are going to come through this stronger than ever.
I hope that this came across in the right way, I only mean it as a little something to lift your spirit or let you know how brave you are, but sometimes I am not very good at getting my point across as eloquently as I would like.
Heather
By: heather on April 1, 2010
at 12:24 pm
I just wanted to introduce myself and offer my support from afar. I am a classmate of Destiny’s and have come to know of you through her. I know you don’t want to be in this position by any means. I am angry for you, too, and for all the people who are struck down with illness in a seemingly random way, and how it really tears families apart, shakes one’s faith, and you can never fully go back to who you were before. For whatever reason you were chosen to survive this. Maybe it’s so you can continue to mother your precious children, to continue to move people in your circles of friendship and all across the world who have heard of your story. I know that because of you I will be a better nurse. To hear you describe your feelings in this latest post especially. Its going to take a lot of time because you have been shaken to the core. You have so many people wishing they could fight this battle for you, ease some of your burden and pain. Just know that you are surrounded by lots of love and caring, and that you are important to a whole lot of people. Each day that passes gets you one day closer to going home to your loving family. Thank you so much for sharing your journey.
By: Darshani on April 1, 2010
at 12:32 pm
Kate, we’re all pissed off too. I’m someone who believes there’s no point on focusing on the negative, or on wasting energy worrying about what might happen, but in this case you are totally entitled to your anger.
Audrey is so wise, and I’m so glad she’s here to say the things she does.
Sending thoughts for decent weather so you can have Isaac visits in the parking lot!
By: florapie on April 1, 2010
at 1:45 pm
Argh. Anger is a hard one. You know it’s normal, justified, necessary, but–it is so consuming. Writing helps, but you obviously know this. I’ve been known to type vigorous, expletive-filled letters to the powers that be, myself, etc. just as an escape valve.
Exercise is my best remedy, but I don’t know how much of an option that is for you right now. Can you talk your PT staff into letting you throw plates at a wall?!?
You say you feel like you’re sinking into an abyss of anger and self-pity–but like others have said, I think you’re actually swimming/kickihg/thrashing through it. It sucks, no question, but you won’t sink.
Also? Your rehab place doesn’t sound that impressive. OK, no babies on the floor. But make them (or if you’re too tired have your family make them) offer you other options. Advocating for what will make you feel better is maybe a productive channel.
By: Sara on April 1, 2010
at 1:47 pm
I can’t really say I blame you for being angry. I’d be spitting nails, too. As others have said, it’s probably going to help you thru this to be angry and sad and all the other things you’re feeling.
I don’t know if you’ve thought of counseling or if it’s been offered to you but perhaps talking with someone who has experience with traumatic stress and depression would help. Because you certainly have gone thru trauma and stress.
Also, not allowing you to see your baby seems cruel and inhuman. There has got to be a way around that. There just has to be.
By: Major Bedhead on April 1, 2010
at 2:55 pm
When you’re going through hell, keep on going.
Oh, dear Kate, what can I say. Audrey said it best. You will be angry for a period of time, and then you won’t. It’s a cycle. There’s no clock on it. Your have to accept that anger is the natural human response. Time is the healer.
Know that the knitties love you.
By: amaryllis on April 1, 2010
at 4:55 pm
I wish I could hug you Kate.
Some day this will all be a distant memory. I hope that happens as soon as possible.
By: Kristi on April 1, 2010
at 7:04 pm
Ah Kate. Of course you are angry, you would be nuts if you weren’t angry. It will pass, when it passes. But it will.
Put Willem or Gretchen on getting you to see Isaac. There are ways to make it happen, but you will have to raise holy hell, and you need your energy for other things. W may want to call your pediatrician and see if they will raise holy hell for you. I know I would.
More vibes from Seattle (and hi Janice NW!! I still think of you and B a lot, small world, no?)
Deb
By: debz on April 1, 2010
at 7:29 pm
A good friend once told me that anger was a good thing, it means you are still alive and feeling. Just know that I am sending lots of prayers and hugs.
By: Patty on April 1, 2010
at 7:37 pm
Kate~ You are a fighter! When crappy things happen to me…I try & think of “worse” things that could of made the situation “worse” then it gets me in the mind set that I’m thankful that “worse” situation didn’t happen.(did that make sense?) It helps me start to accept what did happen and put some sort of spin on it where I don’t feel overwhelmed by it.
Baby steps, I know you are going to come out from all this!!! You are one strong chick!!!
Love you!
By: Shannon on April 1, 2010
at 8:19 pm
Stay strong sweetie. I am praying things get easier for you each day and that you are holding that sweet baby surrounded by your family in the very near future.
By: Vanessa on April 1, 2010
at 10:35 pm