Everyone on the internet always seems to be doing an awful lot of talking. Always. We talk about ourselves a lot. It seems we spend a lot of time thinking (talking, blogging) about ourselves, our businesses, our children, our issues… Anyway, there’s just a lot of talking.
Maybe not enough doing (?)
And not just doing so that we can talk about what we did on our blogs.
I get scolded a lot for not blogging frequently enough. I feel really flattered that anyone cares to read what I write. But lately, I feel like doing things more than I feel like talking about doing things, or talking about the things I did.
I think that’s ok. I think it’s ok for you to let your blog go dark for awhile so you can go do things.
To be honest, there are quite a few people that might benefit from taking the time to get out of their own heads for a while. To take it a bit further, there are others that would benefit from taking the time to take their heads out of their asses for awhile too. but I’m not going to talk about that today.
I’ve got some doing to do.
And I’m probably not going to report back about any of it. At least not for awhile. ;)
For a long time I have been trying to figure out how to explain how it feels live with chronic illness. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”
But it doesn’t work that way.
The goal of treatment for Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome is to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. My surgery and treatment was only partially successful, and I continue to progress. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.
So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from my treatment, no matter how small, is a miracle to me.
If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a kleenex, and for god’s sake, make me laugh until I pee my pants.
Just don’t feel sorry for me.
I spent a long time hiding all of this from all of you. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.
So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.
And also, I’ll eat you up, I love you so.
Hello. My name is Sara. On May 20, 2010 I had brain surgery. I also have fancy new titanium plate in my head. I’m feeling relatively badass lately.
Here’s the skinny folks. I have a brain malformation that causes the bottom most part of my cerebellum to grow out of my skull, through the forgem magnum and into/onto my spinal cord. This creates several problems. First of all, it creates pressure directly onto my brain. This causes daily headaches and migraine-like-holy-shit-headaches 2 to 3 times per week. In my case, it also caused double vision, hearing and vision loss and nerve damage. Secondly, the pressure on my spinal cord caused a serious interruption in the flow of spinal cord fluid. This caused a cyst, or syrinx, inside my spinal cord causing additional nerve damage, change in my gait, weakness in my limbs, loss of feeling in my face and partial paralysis. I have had this malformation since birth. The severe headaches began over a decade ago. I have had a headache every day for seven years. In the last 6 months I have had increased trouble with balance. Some days, it was hard to walk or hold my children.
I have been able to hide this very successfully for many years. As neurological symptoms have progressed, it became harder to hide these things. I ruined family vacations. I frequently had to back out of plans. I figured that if I could be strong enough to be a good mom and be good at my job, that it would be enough. I was totally used to it. I still had an amazing family, the world’s best friends ever, and a life that made my heart truly glad every day. Maybe it was a little harder than a healthier person’s life, but it was mine and I still loved it.
Lately, it didn’t matter how strong I was. I couldn’t be the mom I know my kids deserve. I had to put too much onto Augie. I was struggling to accomplish everything I needed to do in a day. Slowly, I was becoming so physically worn that all the positive attitude in the world couldn’t cut it.
I went back to my doctor recently and told that same story. A failed neurological exam led to an MRI. (I wasn’t too worried, it sure wasn’t my first MRI with all these headaches…) A neuroradiologist caught something that several other neurologists had missed. I had a 6mm Chiari Malformation bilaterally. My brain had escaped my skull. (Come on, this is totally badass though right?) I was referred immediately to neurosurgery. Upon further research, an earlier diagnosis of MS was finally dismissed (can you imagine how miraculous this was?!), symptoms were explained, and most importantly of all, my diagnosis was one of “We think we can help you, Sara.” not “Tough break, kid.”
It has been a long long journey. On May 26, 2010 I sat on my bed and cried tears of joy. For the first time in 7 years, I did not have a headache. I had forgotten what that felt like. I was overcome with gratitude.
I am healing now. I am 9 days from surgery and some of my symptoms are gone. (I can breathe so much better without pressure on my brainstem!) Some will stay. Some spinal cord damage cannot be repaired. (YET!) I’m ok with that. I’m ok at 90%, because with gratitude in my heart and all of the beautiful people in my life, I will achieve 125% every day.
So, that’s my story. This is the very first time I’ve told it. I’m glad to be able to share it with you.
I very specifically asked the surgeon NOT to touch the Jackassery Lobe. He complied. Fair warning.
Also, FACT: My husband can sneak video ANYWHERE. I plan to continue to share my experience with all of you over the next months. We have captured this entire experience with wickedawesome video, photos and words. Some of it is happy, some scary, some just plain gross. But it’s all part of this journey.