On my daughter’s 6th birthday, I began to write again.
My brain isn’t doing exactly what I want it to do. Well, it is.. but it’s tricky. I’ve written several blog posts over the course of the past week and all have such glaring errors I had to just shut down my computer in frustration.
But with that frustration has come two weeks of energy. Of feeling good. Ok not good, but functioning. While my brain plays catch-up, my body is saying RUN RUN RUN GO GO GO. So I am playing this strange balancing game between a body that is finally willing to do more than sit, and a brain that is fogging over from time to time, forgetting where it is supposed to be and what it is supposed to do.
It’s frustrating, to say the least.
The past 10 days have been such a rollercoaster it’s hard to know where I stand. What I do know is regardless of what I do, the entire house feels the ramifications.
Even though I’ve been able to do more- from attending a concert to making home-made baked goods for both the kids’ birthdays- we haven’t gotten a hold on this active flare or this inflammation, and we’re still struggling with the news of my ‘stroke’ … so it’s like walking around in this half-daze of cautiously optimistic and waiting to be hospitalized. And the kids, despite our sheltering, have obviously caught on.
Tonight’s games and fun included ‘Pet Hospital.’ Of course my kids can’t just play normal Pet Hospital…they need to hook turtles up to elaborate life support systems.
Healthy play as they work through the chaos and ups and downs of Mom feeling good and feeling bad and on the couch and playing catch in the backyard. It must be how they deal and make sense of me one day being SuperMom delivering 42 cake pops to Kindergarten, just a week after delivering 20 home made butter beer cupcakes… and the next unable to lift her legs to get upstairs.
Consistency. Normalcy. How I crave these every day things. And now, my one release…my one outlet, is being slowly striped away as if it were just another organ. Just another casualty of this disorder.
I will not give up writing. Even if it takes me all week to get a post out. Even if I have to think way harder than I used to just to make sure this sentence makes sense.
Don’t get me wrong, it’s not bad. Not…bad, bad. It’s hard to explain. It’s as if everything is normal, but just…off. It’s not exactly normal. Something is just not right. If normally my life sits at five, something – presumably the stroke – put me at five point two. Just a smidge off. Walking up the stairs, it’s as if I have to think so my legs don’t miss that rhythm you need to go one foot..then the other. But not by much, just by a tiny smidge.
I’m not afraid though. I feel strong. I feel like myself, even if it’s only inside my head and I can’t get it all out. I also know this is just another stage- one I have no doubt we will pass through and conquer. I’ll see the neurologist soon, we’ll do what needs to be done. And I will continue on this path of finally feeling functional.
There will be more home made birthday cupcakes. More concerts. More birthday cake pops. More games of catch in the yard as my daughter finally nabs that popup and my son whips the ball harder than he should just to see a weed break apart in a million pieces. More walks around the block. More being able to get out of bed and pack lunches and more talks to reassure those who love me that I can, in fact, drive myself to the doctor.
More…just…more.
And I can live with that.
There’s not much I can say to this: I don’t know what you’re going through. I have one, itty bitty, tiny inkling of a small part of it, since I’ve been battling a chronic illness for 5 years now, but I don’t pretend that my illness in any way compares to your daily struggles . I know i’ve felt helpless and guilty and fed up and overwhelmed and defeated, and I suspect you’ve felt all that and more. MUCH more. But I want you to know I admire you, and am rooting for you, and I really, REALLY want lupus to #suckit. Keep fighting the good fight. Hugs.
G-d bless you. I want to say all kinds of platitudes but I’m just not going to do it. My heart is with you through this journey and I send you all the strength I have. Take care of yourself.
It looks like the turtle is going to be okay… those kids know how to heal and care for the ones they love.
I’ll keep coming back and thinking of you all.
I hear you. I feel fortunate that my children are grown up – sort of. They understand my depression and its symptoms better than they might have when they were young. They understand my fatigue and stomachaches better than my employer, in fact. But that’s a whole different issue….
I wish you more good days than bad, and understanding from your family. I know you love them with all your heart and more.
I love your blog posts. The quick ones, the lengthy ones and the ones that take a week to write. Either way I know that I’m not the only one who is blessed by your writing and how you share the path you and your family are currently traveling on.
More, more, more blog posts! 🙂
Keep going, Erin. I’m pulling for you.
Namaste Dearest Erin,
This post breaks my heart for you and compels me to share with you what I hope is a bit of light.
I was constantly exposed to Agent Orange during the Vietnam War. I have since had increasing health problems culminating in a Diagnosis of Chronic bone deterioration and Hepatitis C, Chronic fatigue and live with constant pain. I empathize with you on levels that are hard to express for me.
When I was finally told I was not crazy, but actually sick, I was going through a divorce after 25 years of marriage, had custody of 3 children and was sentenced to a year of chemo therapy that was experimental at best. Over 50% of the people in this study either opted for suicide or just quit and accepted the inevitability of this disease. My children would not stop. They stuck by me, supported me emotionally every step of the way. After the chemo, my oldest daughter, RIP, packed us all up in a Suburban and took me to the High Holy Ground of the Original Nations, Washoe valley in Nevada, We spent the next 3 months with me camping at the cliffs of the Shamans and meditating in the pristine sunlight and clean air of Lake Tahoe in a very remote park.
My return to our farm included followup liver biopsy’s and the declaration that the disease had not progressed any further. Much to the surprise of the Doctor’s involved. That was in 1992. Today, I am very much the slower, not nearly as robust as I had been but have learned to deal with the issues through staying in the moment, Having no fear and speaking out, when I can about the larger issues that are threatening the whole global population. I began to write.
Please know that you can do this. I did, You certainly can. Your writing is so very important and inspirational to so many people. Sometimes we find ourselves forced into slowing down, re evaluating our goals and with the grace of love and family, pressing on.
When it gets dark and my mind is clouded from the strokes and the inability to focus, I simply sit in the sun and be still. It is an act of faith, but one that has never let me down.
I have rambled enough, I mostly wanted to let you know that you are not alone in this experience and that you can make it. Others have before us and we can teach others that will follow, by our example and our perseverance
You are in my thoughts and prayers every morning at sunrise meditation and every evening at sunset meditations. You are a true Peace Warrior, Stand Strong. Have no fear.
Peace and light, prayers for you and your family
Your friend
Michael Sykes.
Dear Erin,
As I understand it, strokes leave you with that “off” feeling. My Dad used to work for an agency that drove outpatient stroke victims to their appointments. Your story reminds me of one he told me. He was taking one very annoyed woman to her doctor’s appointment because she didn’t have the all clear to drive yet. She was annoyed because she had TRIED to drive the day before only to discover that she could not simultaneously steer the car and turn on the turn signal. (Her solution? She came to a complete stop, turned on the blinker, and went again, much to the consternation of those who had to share the road with her.) A few weeks later, Dad came across the woman while delivering another patient to an appointment at the same clinic. She had driven herself, having overcome the blinker-steering problem, and another involving windshield wipers and car breaks. (She claimed to have practiced in a parking lot after the first scare, but Dad was dubious.) It was a matter of retraining her brain. Your brain will re-learn and some of the fog will lift. I’m glad your body is at least giving you a break.
More, more, more!
Do what you can, Erin, and work it out. When I was on chemo the first time, it used to take me half the day to force my brain to write a single blog post. But the more I stretched it, the better I did. Eventually.
You are doing great. Your kids sound like they’re doing great. Just do what you can. It’s enough.