I’ve realized that heading to the hospital for ANYTHING causes a trigger reaction in me.
I’m headed there now for a very normal, very routine colonoscopy and I’m terrified. I’m terrified they are going to admit me and make me stay. I’m terrified they will find out that Lupus is doing something ELSE to screw with my life. I am terrified the kids are scared, that my husband is scared, and that everyone has to deal with me in the hospital, at the hospital, or anywhere NEAR the damn hospital.
I have not been admitted since my TIA this past summer and that set us all back mentally around here for a good long while. In fact, I’m still not sure we’ve recovered. It’s too scary. it’s too hard. And it reminds everyone in this house of just how many organs I have lost, how many surgeries and procedures I have had, and how horrible this entire Lupus journey has been.
I want this to be over. And while I realize there is no cure for Lupus, I also know some people have a handle on their disease and live a very normal life. I want that to be me. I want that for my family so badly that I’m up at 5am crying and trying to pull myself together for their sake.
It makes me sick to my stomach what I put them through. Sick.
I know what you all are going to say so please, it’s ok. I would do all of this in a heartbeat for them. I wouldn’t even THINK about doing it and I’d be right there next to Aaron if it were him and of course next to either of the kids, advocating on their behalf and holding their hands. But I don’t want anyone to HAVE to do this for me. That’s just how I am. Believe me, I’ve tried to change over the course of all of this…and while I have gotten better at accepting it all, I SITLL HATE IT.
I’m the Mom. I’m supposed to take care of them. That is my job. And yes, Aaron takes care of me like any loving husband who kicks ass would…but he’s been doing it for SO LONG and the kids have had to deal with this for SO LONG. Too long. Way too long. It’s NOT FAIR to them. It’s just not.
I’ve had trouble putting into words this week’s passing of my friend Susan, otherwise known in the blogging world as WhyMommy. She was an inspiration for one of my first BlogHer projects way back in the day: BlogHer in Second Life. She, well…her avatar, came to the virtual conference because she was undergoing chemo at the time and could not attend the real thing. And I can’t take my mind off her husband and two boys and how hard and awful this all is for them. No one should have to lose their wife, their mother, their friend.
And I think about all the years that have passed where Susan fought so hard and even worked (she was an astrophysicist how awesome is that?) and kept up with life while cancer was attacking. She was a wonderwoman. And my bitching about some small procedure seems so insignificant in light of recent events.
But she would talk to me about understanding how I felt. She was one of the few people with whom I would commiserate about being ‘sick’ while trying to raise a family and live a normal life. Just a few weeks ago she reminded me that I was strong, and brave, and that my children and my husband love me unconditionally -even if that meant I was stuck in bed and even if that meant I couldn’t do it all. As she put it ‘they are happy to just have you THERE, Erin. They love you.’
I wish she were here now to tell me those words again. Because I need my friend this morning. It’s so selfish of me, but I need her. She understood. And I would tell her she is so much more brave than I am (she was) and she is so much more graceful in her fight (she was) and that I wish I had her attitude. And she would tell me she has bad days too and then she would send me something awesome to show the kids that usually involved space or the planets and we’d laugh and just…do what friends do.
Her absence this morning is like a kick in the gut.
In honor of Susan I’m going to attempt grace today. I say attempt, because Susan is smiling down on me laughing, knowing I will end up telling Lupus to #suckit rather ungracefully. But for her, I will try.
Grace is something I need more of anyway, so it can’t hurt. And when I think of Susan, I think of grace personified.
I’m also going to concentrate on these photos, because they make me smile HUGE:
…and this one, which will forever remind me of Susan and how even VIRTUALLY she could rock bald in a ball gown like no other.
Grace.
#youcandoitErin… really that’s all I can say. Oh and I can send a hug and tell you it’s okay to be scared. That just means you’re normal. Around here, BTW, Grace is nothing more than one of my Great Aunts. Not really something we get to live in. Oh, and @aaronvest really does rock! I have those same PJ pants! He’s way cooler in them than I am though. Good luck with today’s trial… this too shall pass. {{{hugs}}}
Susan was so many different things to so many people. It is amazing how many people she deeply affected. Love to you on this difficult day.
Erin-
Sending lots of love and prayers from NC!! LOTS of LOVE & PRAYERS!!
Aunt Donna
Best wishes for an uneventful colonoscopy. You’ll tackle it all, because you are strong – Susan knew it, and we know it.
I think we all need a good dose of Susan’s attitude from time to time.
Reading this I kept thinking about that old Winston Churchill quote: “When you are going through hell, keep going!”
Keep going, Erin !
Lupus can #suckit. I couldn’t agree more – Susan was the epitome of grace. But you, Erin – you epitomize TOUGH. Whenever I see your photo anywhere, that’s the word that I associate with you – TOUGH. You are allowed to have bad days, just as long as they’re few – that you’re not wallowing in self-pity FOR TOO LONG. And since you wouldn’t do that, everything else you DO is OK!
Also? Admitting those feelings makes you rock even more. Because others wouldn’t. So thanks for reminding ME that my aches, pains, exhaustion – they aren’t the end of the world – that there ARE things worse than recovering from ANOTHER abdominal surgery, and how very lucky I am.
Oh, Erin. I wish I could come make you some freezer dinners and paint your toenails and do crafts with your kids while you nap. I was a sick, useless wreck to my family for an extended period once, and while we never fully got to the bottom of what caused the clusterfuck (found plenty of contributing factors, god yes, but as for the underlying question mark the best I’ve got is “unspecified autoimmune dysfunction”), it was pretty real and devastating and I spent most of two years pretty much bedbound, on time-release morphine, in and out of Club Med, etc. I remember that feeling, the desperation to BE, the frustration…I try NOT to remember it because oh man did it ever crush my spirit, but it’s not hard to recall when I read a post like this from you. Not at all. The thing is, I eventually DID get better and am now working three jobs to support my family, hauling bags of feed and soil and fertilizer for our garden and animals, handling the finances…I can once again stay awake and work hard and function at the executive level and think clearly and ALL of those things I lost the ability to do! I can’t fully explain why that happened (again, plenty of contributing factors, viral loads that dropped, blood counts that improved, endocrine functions that normalized, but no wonder-drug I was taking, alternative woo I was embracing, prayer chains going around the innernet…none of those things people like to point to when there is improvement of that magnitude). It’s scary as hell because in my mind this means I could go back to being that way, but at the same time I can do everything again and have been for a few years now, and so I have the hope that if I did I’d recover again, and that maybe you will, too. Mysterious recoveries happen, is what I’m saying. I hope you make one.
Sending hugs and good wishes. I’m so sorry to hear about your health troubles…doesn’t that just suck! I hope that this visit turns out to be great news!
Sending lots of love and best wishes to you. It’s always good to be on the result side of the test, always hard (and sometimes worse than hard) to be on the “getting ready” side.
I’m so sorry for the loss of your friend.
GIANT HUG.
That is all.
Just know that what she was to you, you are to me.
I’m glad I got to wish you well before you left this morning. I raced home to check and see how it went. Mom and I went out to dinner to celebrate you not being hospitalized.
No, I don’t think I’m learning grace from you. But you’re why I keep fighting. I always waffle between commenting as to how inspiring you are and staying silent but I need you to know that you’re amazing. And you’re going to be there where your kids take over the world.
<3
Okay, I’m coming over next week with a cup of fucking sugar and we’re going to dish about the regan library.
Really.
They wouldn’t let the parents in the Reagan library with the kids. I’m not kidding. ONLY teacher, docent, and class. Parents had to go in on their own and NOT with the kid group. SO YES PLEASE, let’s DISH. Just name the day.