I wish I could come up with something witty to say, but I can't. For the past 36ish or so hours I've been on a sort of inward spiritual journey that no one else knew about. First, Sarah over at A Girl With Guts blogged about being married to a disease and the whole caretaking role. That threw me into an emotional tailspin because not only do I have a TOTALLY AWESOME spousal unit who takes the most amazing care of me (like YELLING at me when I am being a bad patient and not taking my medicine because "I feel good!") and has had to do things for/to me that a spouse should NEVER have to do to their partner. I have a super supportive extended family who never give up on me no matter what. Thrown into a flare and have a 9month old son at home - one call to mom and son is off to LIVE WITH HER while amazing husband takes care of me.
Hit another flare when I am living in the middle of the Pacific Ocean and amazing husband is off playing Navy/Marine Corps in Afghanistan - super supportive mom flies to tiny island, packs up kidlets and myself and flies us back to continental US.
Hit another flare that is like no other flare I have ever had, decide it is time to STOP THE INSANITY and put this mother effing disease in its place. Call super supportive mom and she is on the next plane headed south, ends up at the wrong airport, takes a Greyhound bus to get to me and then proceeds to spend the next 2 months watching me fight for my life.
And here is where I had a reflection - people kept telling me how strong I was (they still do), how they couldn't believe I hadn't had a breakdown yet because they sure as hell would have. I know why I didn't break down on the outside - I was sure as shit falling apart on the inside. My mom. She had never really experienced my disease in this way. She had never seen me THIS sick. She had never seen the needles, the IVs, the monitors, the tests - the blood....dear baby Jesus the blood. It is/was "normal" to me. How screwed up is that. It was NORMAL to me? Sheesh, what has this disease done to me that all that is NORMAL?! I couldn't fall apart because I needed her to be strong for me. She didn't know how to deal with all this stuff, so I had to show her. I had to be strong so that she would be too because I NEEDED MY MOMMY. Is this even making any sense? Because in my brain it makes sense but as I type it I don't think it is coming out right.
Then yesterday Sarah (A Girl With Guts) posts on her facebook the question "who are you?" AFTER I JUST BLOGGED ABOUT IT! Coinky dink? I don't think so. I think it was God reinforcing what I blogged - reminding me that I am SO MUCH MORE than this shit-tastic disease that has defined me for the past nearly 9 years. It was like a little poke - "yeah, I saw what you blogged and I am gonna make sure someone that you respect and admire poses that same question so you know you are not alone". Not as eloquently put as I would have liked it to be but I am trying to just let the fingers go here people!
THEN Jackie over at Blood, Poop and Tears blogged THIS about suicide and wow. Just wow. I had to pick myself up, say a little prayer to the colo-rectal gods and give a little shout out to Dr. PottyMouth all at the same time. Jackie, I hope you don't mind if I quote you here:
*tweet*tweet*chirp*tweet* Are you still there? I know that last part is hard to read. It is scary. No one has ANY idea (until now LOL!) how many times those things passed through my mind. Oh how many times, I couldn't even begin to imagine. Except the No one will ever love me one - that one I usually switched around to sound something like "at some point he is going to get tired of my shit (literally) and leave with my kids and there is nothing I am going to be able to do about it because I can't even take care of myself let alone 2 little boys". God I hate this disease. Like it isn't bad enough what it does to your body physically - it has to go and screw with you mentally too. Thanks for that.
THEN - MCA dies battling cancer. WTF? Okay, I was kinda dazed when Michael Jackson died. I was sad that a great entertainer was gone - more sad really that my kids lost out on what future music he would produce and that they would never see him perform live. But MCA? It's different. The music - the beats. The lyrics. They spoke to - OF my youth. Can you seriously be a child of the 80s and NOT KNOW the Beastie Boys? But more than that - he was fighting a CHRONIC DISEASE. He was YOUNG by all accounts. He wasn't DONE living life - there was SO.MUCH.MORE. And THAT is what got me square in the chin. eff uuuu ceeee kay. Chronic disease. Kills people. They die - young. And younger. And way too young. Whoa. It was just a LOT for me to process - there was some real deep shit rollin' through what little grey matter I have left between the ears. I said on Facebook earlier - I cannot even put the thoughts running through my head into coherent sentences. And I still really can't. I can't make them make sense when I type them - or say them. They only make sense to me on the inside. Maybe if you know me you know what I am talking about. But damn. Just damn.
It's time to get ill.
Thank you for reading my blog. And for quoting it.
ReplyDeleteA huge part of all of this is just being aware of your thoughts. Its huge to just be able to digest what you're thinking.
I'd be lying if I said I didn't have a creeping thought every now and again, but the difference between then and now is that I can turn them off now.
Its all a learning curve.