Four Years Later: Indivisible

I can tell you that many, many things have changed in our home in the past four years.

From celebrating the election of President Obama, who I backed earlier in the race than some which got me into a good bit of hot water, to my first visit to the White House.

Yes, the first year of the Obama Administration was a whirlwind for myself and my family.

I had taken on my first full-time  job since having our first child and thrown myself in the same way I throw myself into everything- with all I have. I traveled, I spoke in front of small crowds, large audiences, students, and chatted it up with national news outlets.

My mission was to make sure the world knew that women online were a force. They could not only be the difference in elections but also change the world.

I’d like to think I succeeded in spreading the word and creating opportunities for every woman. The stay at home Mom, the career woman, the childfree, the childfull, the hobby writer, the hard core moneymaking writer, and even the just finding her way blogger.

At home, I would like to think I put just as much effort into my children and into my marriage. Making dinner when I could, making sure everyone was where they needed to be, had what they needed to have in their possession, got done what needed to be done, and was loved ridiculously along the way.

I was exhausted, but happy. It was chaotic, but fun. I looked forward to important conference calls, parent teacher talks, and husband wife romps later on.

And just as my life began to reach the peak of where I had always hoped it would be, everything came crashing down.

Everything.

And now nothing is where is should be. Where it was. Or where I want it to be. Parts of my body are missing. I do not recognize myself in the mirror and when I do, I struggle with what I see.

I try so very hard to keep the normalcy of what once was, only to find I’m the only one still trying. Or at least, the only one who seems to think life can go on just as it was.

Before Lupus.

BL. AL. It’s like Before Christ and After Christ, but without all the miracles.

I now cherish every moment I have with so much more enthusiasm than I thought possible, only to find blank stares from the kids with the typical ‘Mom, stop hugging me so tight’ eyeroll. And that romp in bed is more of a snore induced by drugs and the hope of maybe a kiss before work. Hope being a strong word.

I feel like I am living someone else’s life. Because this certainly is not the life I planned. It’s not the life I had. It’s not the life I want.

But it is, currently, the life I am given.

So I remain grateful that the stroke wasn’t even detected until after, and the rehabilitation was minimal. That I only lost part of my colon, not all of my colon, and I do not have to wear a bag…which certainly would have destroyed any hope I had of a sex life.

I remain grateful not having a gall bladder means I can only have one or two fried pickles instead of a basket full, keeping the 100lbs I have gained from steroids to just 100lbs.

And I will forever pretend I am grateful that the total hysterectomy, which finally rid me of the excruciating pain from the inflammation destroying my uterus and ovaries. I will never have another period and never have to carry tampons or pads or worry about any of that mess ever again. Even if it has destroyed me emotionally in too many ways to count.

I’m grateful my little family has grown closer in many ways, having gone through a tremendous crisis that my kids can now talk to producers on camera about it:

…the worst was when she got sick on Mother’s Day..WHY WHY DID IT HAVE TO BE THAT DAY!!

Now it only reduces me to minor humiliation and minor, inner sobbing.

Just like every single day when everyone finally walks out the door to go about their lives, and if I don’t have to leave for the doctor I sit here wondering what to do with my life…feeling again, only minor humiliation that I no longer am what I was to any of them, yet am something different. Some of which I am proud of, most of which I am not.

As I grow stronger, as we get a handle on this beast, I am getting a handle on me. And she’s pissed off.

I have no one to talk to about this anymore, because frankly no one should have to talk with me all the time about this. They deserve a break and a normal life. So I write here. After so many years- getting sick just after President Obama was elected, and now coming up on the next election, all of this is old old old old old.

And the truth of the matter is I hate it. And while I understand things will not be the same, I want them as close to the same as they can get. And I am fighting so fucking hard to get there. So hard. Too hard maybe.

I know I am the only one who can fight, I just miss doing it with locked arms all around me.  My husband, my mother, my brother, my father- all my biggest supporters have their own lives that must be tended to and they can’t spend four years on me, me, me, and only me. I don’t expect them to. And I do appreciate their support now when it’s given. They remain amazing and there for me. In very different ways now, of course. But they are there. For that I am grateful. So many have lost their family over so much less. I’m trying to remind myself of that as I trudge through.

So four years later I keep getting asked over and over and over again if my life is better than it was four years ago.

I got mail #Obama2012

No. No my life is not ‘better’- but that depends greatly how we are qualifying ‘better.’

It’s ‘better’ in that I am getting healthier. Stronger.

It’s ‘better’ in that our medical bills are becoming more manageable thanks to the Affordable Care Act aka ObamaCare.

It’s ‘better’ in that we did not lose our home due to foreclosure, or even get near foreclosure, because JP Morgan Chase worked with us to modify our mortgage (through HARP and HAMP) and I was finally granted the private disability check that took a chunk out of every paycheck I made with that full-time job I took after the President was elected.

It’s ‘better’ in that my daughter still has Title IX in place to play co-ed, PeeWee basketball, and she can score her very first every basket:

It’s ‘better’ in that the President has backed same-sex marriage, equal pay for women, he has repealed Don’t Ask Don’t Tell, he has taken care of Osama bin laden, he has put into place an Auto rescue of Detroit keeping many of my friends and family back in my hometown in jobs.

And, as always, his administration has taken the time to show the compassion to follow my illness and express their concern and thoughts when necessary. For that, I am grateful.

These are good people.

I don’t think any of us are where we thought we would be four years later. My family being probably more surprised than any of you.

But I know there is no way we’re going back. None. Just like I refuse to go back and allow this illness to overcome my mind, body, and soul…I refuse to let the political illness attempting to turn back the clock in this country to overcome our collective mind, body, and soul.

We are Americans and we do not give up. We have a strong family here in my home and we certainly do not give up.

I refuse to allow setbacks, and seeing that brink of the abyss, to scare me into thinking turning around is the right answer. I know nothing could be further from the truth.

I also know the hearts of all those involved. From my family, to my friends, to those working for me and you in the White House. And I know how hard *I* fight.

There is too much fight in me left to allow how far we have come to slip away with fast talking, slick, typical frat boys trying to sell me an easy fix.

There is no easy fix to Lupus, and as the President has said from day one, there is no easy fix to the mess we’re in. We will have to continue to work hard and continue to work together.

I know it is a lot to ask of anyone. We are all tired.

I’m willing to go this alone and shoulder it all for myself and for you and yours. But I ask that you join me, because we are so much stronger together. We are so much stronger when we work as a team.

We are so much stronger united.

…indivisible. Through sickness and in health. With liberty and justice…

…for all.

Comments

  1. I’m at the lowest point I’ve been in my life in years, most of it my own doing. But I wouldn’t change who runs this country now, no way. With that, and with the progress made in so many ways that matter to me and to so many who matter to me (some I know, millions I don’t) I am absolutely fine.

    Well written, my friend. I know it’s been hard. But your voice still carries. It’s important that we use them where we can.

    Fingers, toes, everything crossed for November 6.

  2. Erin

    I thank you for your blog. It has allowed me to get to know you and just how similar we are to each other.

    I was diagnosed in 1995 and even though I have body parts missing and horrible lupus fog, my life isnt really ‘better’ I just know whats important now.

    As I went to vote early today, I thought about how my vote (and my boyfriends vote) will actually SAVE lives. I thought back to that day when the ACA announcement was made and how we were all so thankful about it.

    I havent given up. I wont give up. Ive been fighting for 17 years and Ill continue to fight for as long as I can breathe!

  3. Cynematic says:

    STANDING EFFING OVATION *clapping like crazy, crying a little*

  4. Nadine Steidl says:

    Erin– I know many have said this to you, even if you don’t always feel it. But, dammit, you are my hero. And you are just because you keep on, keeping on. I do with my fibromyalgia and CFIDS– and, like you, this is not the life I bargained for. I’m still paying for student loans for the Master’s Degree in Library and Information Science that I will likely never be able to use for gainful employment ever again. But these are our lives. And we will continue to make them the best possible ones that we can live.

    One more thing– whenever I feel like I can’t do something, it’s too much, I can’t make it, my mind goes back to that picture of you at BlogHer. On the stage in a gorgeous gown, showing the world that you are alive and beautiful, dammit. That picture keeps me going– the courage you took to do that inspires me when I need it.

    And you are absolutely right, my friend. “United We Stand, Divided We Fall…and if our backs should ever be against the wall– we’ll be together…” All of Us.

  5. This may have just made me cry.

  6. I just want to give you a big gigantic hug. Like Nadine said, you’re one of my heroes. My CFS isn’t as bad as it could be. I’ve never had to be hospitalized for my depression. But goddammit, this is not the way things were supposed to be. I know I can never go back to an office job, even though I would almost kill for a steady paycheck right now… chasing freelance clients for money is not good for my mental health or my bank account.

    My life is better in some ways than it was four years ago, worse than others… but yes. I could be much, much worse if we hadn’t had a President working so hard to help people like us instead of just the rich folks who have millions of dollars to throw at campaign funds.

    Maybe at one of these conferences, I’ll get up the nerve to go up to you and say hi. When you’re feeling down, remember you’ve got people like me who look up to you for everything you DO even when you can’t do what you used to do.

  7. I thought of you when I started the 3 day quest to track down my ballot. This is my 2nd election and damn it, I am going to vote. Vote to protect my ‘Mama Erin’ (as we call you in this house), vote to keep the president who is protecting us…

    Yesterday some volunteers were canvassing our neighborhood and got to our house as mom and brotherface finished their absentee ballot. I wanted to hug them for making sure we were voting and we were ready.

    Thank you for reminding me again why I’m actually fighting.

  8. Elisa Camahort Page says:

    xoxo Miss you, Erin, and with you all the way.

  9. Erin, this piece is beautiful and so very heartfelt.

    We lost our house-though I’ve not blogged about it. -I moved a week and a half ago out if the house my hub and I built in 2004. We’re renting now, my kids are OK, my gay friends don’t need to hide themselves in the military, Obamacare is helping families like yours, there’s a lot of things that are better though my own circumstances, like yours, may not be better right now.

    Keeping you and yours in my thoughts–and looking forward to another four years with our president.

    ~Marg

  10. Yes, stronger together. Well said.

  11. Speechless, Erin – so beautiful and true, every word.

  12. I am so touched with your blog… And I know how it feels when you want things to get back to track, you feel like you were happy once, and now you are not. And you think that the only way to get your happiness back is by returning to who you were before, but it never works… You should strive for a better life by looking to the future not by idealizing your past, even though we all go through times when we feel that we have no future or the future will never be good as the past. You are a warrior and as soon as you defeat your current enemy you will aim to conquer other enemies.

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  1. [...] “Four Years Later: Indivisible” from Erin Kotecki Vest of Queen of Spain So four years later I keep getting asked over and over and over again if my life is better than it was four years ago. [...]

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