When I’m overwhelmed or there’s just a lot going on in my life, I tend to get really quiet. Yes, I’m aware that when it would make the most sense for me to write it out, cry out to the world, I tend to shut down. Retreat into myself. I’m aware. I still call it a survival mechanism. A leftover from a tough childhood.
The things that hurt…
…on the day my sister (in law) died, my son kicked me out of his life and it’s taken me about a year and a half to get something that almost resembles the beginnings of a start. But he’s my son, that’s my boy. I’ll take the pain. There’s no way I’m walking away.
…I miss B (my sister) all the time. I wonder if I could have done more for her. I talk to her a lot. Which sounds like I’m just a leeeetle bit crazy. But I believe she’s around. I think….I hope that we can have these conversations and she hears me and I can find bits that tell me we’re communicating.
…I miss my dad. I miss my dog. I like to think they’re off in this amazing better version of here. And together.
…And my biggest secret. My wedding anniversary is supposed to be tomorrow. I mean …it still will be. The date marking an event that happened 18 years ago will still exist. But mostly only because I’m still alive, sometimes against my will, and I’m still here. I packed up and left for about a year, 10 years ago. But all hell broke loose in my life and I got scared. I retreated back into a life that was familiar. I told myself I was happy.
Then I got sicker and sicker….
Chronic pain, complications from my hip replacement, pneumonia in both lungs with O2 stats dropping to 86%,leading to in home O2 for 3 months. More surgeries, more treatments, all while a full time college student, all while moving to and through 3 different states, all while trying to make a marriage work and take care of my kids and my family.
Tomorrow is my wedding anniversary, 18 years ago I stood at the base of the Ko’olau Mountains and recited words from an event I wrote.
Now, I don’t even know what “thing” (silver? cotton? silk?) the anniversary stands for. I don’t have a card, or a gift, or a plan. Because I am unhappy. Unhappy as in I go to sleep more nights than not hoping I don’t wake up.
I’m sorry to think that for my mom and my kids, but I just feel like my reasons, my purposes…are done. They’re over and I can go now. I mean I’ve lived through 6 surgeries, septicemia, a brain tumor, radiation, and MRSA . And 2 blood transfusions. When is enough enough?
2016 was an all out, no holds barred suckfest. Universally.
But 2017 leaves me feeling like my life is upside down. I’m unhappy. And I don’t fight…..well, with anyone anymore, but my husband in particular. And very few people know that or know why. But the fight has been chipped away, and there’s not much left.
So, yes, I am very quiet lately. I am struggling. I am unhappy. And those are the kinds of things that leave me retreating into myself.
This came through my inbox by way of another awesome chick I follow. Her take:
When I read over the healthcare bill draft released to the public last week, I couldn’t help but cry. If this bill passes Senate, I won’t live to see my 40th birthday. This isn’t a maybe, it’s an absolute fact. This is secondary to the millions of others who will be affected by this and I’m terrified for all of us.
Nikki perfectly and succinctly articulates the way many of our government officials view those with disability and hardship – that these problems are self-created by the individuals who are on these programs. Her mock obituary is a sobering view of what the passing of this bill will do to her, myself, and millions of other Americans.
Many of us in the chronic illness community are already fighting to be taken seriously, to have access to pain relief, to be seen and heard. The Affordable Care Act is not perfect, but no option for health care is so much worse.
My friends, my sisters, my daughter….need access to health care. Even without the challenges of an inoperable brain tumor, or a lung transplant, or kidney disease, Crohn’s Disease, or any of the myriad of autoimmune diseases, health care should not be a privilege.
Yearly preventative check-ups, well baby and child care, vaccines (don’t start with me), birth control, or emergency services for when your kid falls of their bike!! These are not unreasonable expectations for a developed society.
Please write to your representatives. Yes, again, if you have to. Stand up for those that don’t have a voice, stand up for your loved ones, stand up and tell DC this is not okay.
Source: Me Without Healthcare….
I saw a lot of support for International Women’s Day yesterday, but there was also some really ugly closed minded responses (here’s to the “real women” that didn’t “strike” today). Did you know that *every* March 8th is Women’s Day? And November 19th is Men’s Day? And yes, this year Women’s Day held some extra weight. Because of the events of the past….6 months? (give or take) women are marching, speaking out, striking, 10 Actions in 100 Days.
I personally lean pro-life, but I’m standing up to make sure Roe V Wade isn’t overturned. I personally lean more hetero feminine female, but I’m standing up for people to have the right to be who they are. I personally am married to a man in a traditional marriage, but I’m standing up to make sure Same Sex Marriage is not overturned in any of the 50 states that it’s now legal in.
I have a mother, and a grandmother, and 2 daughters. I stand up for them. For me. For women that can’t. For my friends, and family, and all of the women in my life that I love. And for all the women before me, after me, and the women that inspire me. It doesn’t cost you anything to be compassionate and supportive, but it means everything to the peoples that need it now, and in our future generations.
Chronic illness doesn’t take a day off, chronic pain doesn’t take a day off, life doesn’t take a day off, but I did post a strike notice yesterday on my blog. No, I didn’t march on Washington or lay on my couch and check out for the day. But I spoke out and I supported the women that were doing the marching and the protesting. Because I have daughters. Because I know what it’s like to be a woman in this county, in this time period, in this world.
Why did we speak out on International Women’s Day this year especially?
Because being a woman means….
1. Carrying your keys between your fingers as a “weapon” when walking alone at night.
2. Turning your headphones off (or way, way down) to make sure you’re not being followed.
3. Mastering the “I’m walking quickly but not so quick you’ll know I’m afraid” when someone is behind you.
4. Calling friends when alone in a taxi/Uber/Lyft/walking from the Metro to your car in order to feel safe.
5. Texting your bestie/boyfriend/parents/brother your driver’s details “just in case”.
6. Messaging them when you get home to let them know you’re okay.
7. Sitting near other women on public transport to minimise the risk of being harassed.
8. Pretending to be on the phone in any number of situations to avoid harassment.
9. Giving men fake names/numbers rather than risking them lashing out at being told “no, thank you”.
10. Staying silent when being verbally harassed out of fear if you say something it’ll turn violent.
11. Keeping your drink covered with your hand/ getting your friend to watch it if you need to go to the bathroom/having to throw it out & get a new one if it was unattended at a bar so you don’t risk getting drugged.
12. Making sure someone always knows where you are if you’re going on a first date with a stranger.
13. Toning down statements with words like “just” and “sorry” to avoid being perceived as pushy or aggressive or bitchy.
14. Faking being happy even when you don’t feel like it to avoid being seen as a bitch.
15. Not being TOO perky so that people don’t think you’re stupid.
16. Pretending to be patient when you’re interrupted/talked over repeatedly by men.
17. Spending money each month on period products, which are still considered a “luxury” by men/governments.
18. Hiding said products up sleeves/in pockets when going to the bathroom in public places, because there’s still a stigma around periods.
19. Wearing makeup because you’re conditioned to believe your bare face isn’t good enough
or heck, just because you like it – and being told you’re fake/called false advertising.
20. Or not wearing makeup because you don’t want to & being told you look tired/sick/”you’d be so pretty with just a little make-up”.
21. Debating whether the tweet or Facebook status you’re about to post will result in being harassed,& having to make the decision about whether it’s worth it.
22. Answering/deflecting personal questions about your relationship status/fertility/home life from friends/coworkers, potential bosses, current bosses, or random strangers.
23. Dealing with birth control/side effects if you have sex with men & want to avoid getting pregnant because there’s still no male equivalent available.
24. Fighting with the knowledge that the government (dominated by men) has the power to legislate against your body, and standing up to make sure they don’t.
25. And, finally; dealing with people telling you your concerns aren’t valid, you should stop complaining because “women are equal”. (Also known as the “what rights DON’T women have?!” argument.)
One year ago today my sister (in law) Bren passed away. I miss her all the time.
We were so much alike sometimes, and so different in other ways. I loved her so much …
…but I was the one to kick her ass sometimes too. We went back and forth. Fighting and walking away, but as close as sisters. When her kids were smaller, she wanted me to be the one to have guardianship of them should something happen to her. But, her kids were 20, 21, and 22 when we lost her so they’re all grown up. And I’m not in their lives the way I used to be, the way I should be, the way I wish I could be sometimes. I miss the days of her kids and my kids running through the house.
Distance and time changes things. And people. But through all the miles and years, we found our way back when we drifted apart, even if it was just a text or a message when one or both of us was on the move.
The last thing I ever said to her was “I love you” and I hold on to that when missing her brings me to my knees. I’m glad that was the last thing she heard from me. And I’m grateful that was the last thing I got to say. Too often we lose people without having said the good stuff the way we really should have.
I got the phone call the next morning, about 16 hours after she died. I still have the voicemail on my phone…..for a couple of reasons. But mostly because I don’t want to forget. I don’t want to forget losing her, finding out she was gone, and how I felt.
I spent the first few days just kind of wandering around the house, just trying to realize she was really gone. It was like a punch to the chest.
Two weeks later I spent the whole week trying to figure out if I should/could go up to Michigan for a memorial. Part of me still thinks I should have gone. But instead, I participated from here…
I sent a white balloon up, telling her to be happy and free. I sent hope and love up through the clouds. A few months later I got a tattoo of a hummingbird on my left calf, inspired by the losses of her, my Dad, and a few other people. I also have “ana’laigh” tattooed on my left forearm, Gaelic for “breathe”. Inspired by Brenda, and part of my own story as well.
It’s taken me most of the last year to wrap my head around the question “HOW is she gone and I’m still here?” (ridiculous, I know, childlike….but stay with me….). But what I know now is that even if my loved ones ticks stop tocking, it’s not my time piece that’s affected. Her loss taught me more about going on after the death of someone I love.
She’s still with me, but I imagine her finally happy, and free, and feeling loved the way she always wanted (and needed) to be. I talk to her a lot. I miss her. She’s dancing on the clouds, and because I knew her….I am changed for good.
I happened across a news story this morning in my daily perusal of news and what’s-going-on-in-the-world that struck a nerve with me. It has nothing to do with my usual blogging. Actually, no, that’s not entirely true. I have an all metal hip replacement in my left hip, and that fact does come into play in my story. I take it back, it kinda does relate to my usual blogging of “noise from a chick with disabilities”.
ANYway, I have traveled pretty much my whole life. Between growing up as a kid that moved a lot, and then marrying a guy in the Navy, it’s been pretty much a guarantee that my friends and family would be in a different part of the US than I was. Typically it’s fine. I’m not afraid of airplanes or road trips.
This particular story relates to an article posted on CNN three days ago. Angela Rye was “selected for additional screening” and shared her experience. I read through her article and I got it. I mean I really related to it because I’m a woman, and we don’t appreciate being physically accosted for security theater, and because I have an artificial hip (which makes traveling fun). All metal, my entire left hip. It sets off metal detectors.
I know that it will most likely set off their metal detectors. I tell them I have a hip replacement. I have all the paperwork to show I’m just a chick with an implant. I tell them to stick me in the scanner and they’ll see it. I explain everything, and although I have been subjected to “additional screening” for longer than most people, I have complied because I knew it was easier for them to stick me in the scanners that let them see everything than it was to fight with them.
The first time I traveled after my hip surgery was about 7 weeks after surgery. I still had my cane then, so it was pretty easy to see I was just a chick traveling and not a threat. *But* the last trip I went on a few years ago to fly out to my mom’s in California -that trip- taught me a thing or three about what a hurtful experience feels like all in the name of security theater.
I checked in and made my way through the security check points. I had a carry-on and my youngest daughter with me and we were on our way home after a week or so in California. I told the TSA agent I had a metal hip before I stepped through the metal detector. It dinged, unsurprisingly. I explained that it they let me step into the scanner that was right there two steps away, he would see my hip and I could go about my merry way.
“Nope, you set off the metal detector. You need to be checked.”
SERIOUSLY??!! Have you seen any thirty-something, small, white, redheaded moms terrorizing anyone lately?!
Not only did they subject me to a full, humiliating pat down, no that wasn’t enough. They:
Made me strip down to my tank top and jeans, telling me to take my hoodie off in front of Gawd and everybody.
Insisted on keeping my daughter 10 feet away from me
Wouldn’t let me touch any of my own stuff or my kid
Searched my carry-on and my daughter’s backpack
and finally, ran her fingers through my hair, under the waistband of my jeans, up my thighs, over my chest, butt, stomach…you name it.
The entire thing was embarrassing and humiliating. But worst of all, on top of them taking all my stuff away from me, was my kid seeing them search me like I had done something wrong and not allowing my 10 year old daughter near me.
The final kick in the teeth? After everything was said and done, and I got my kid and my stuff back, we made our way over to the gate to sit down for a minute and wait for our flight. Not 5 minutes later a lady walked over, sat down at our same gate, and reached into her bag for something and pulled out a full bottle of water that she had opened, taken one drink out of, put back in her bag, and made it through security!
“Oh! ha…ha….I forgot I had that. Whoops.”
(The water thing wasn’t her fault and I wasn’t mad at her. It just illustrates that the TSA is a joke.)
#TSAVaginaMonologues #SecurityTheater #travelingwhiledisabled
“Do you know who you are? Do you know what’s happened to you? Do you want to live this way? All it takes is one person, one patient, one moment to change your life forever. It can change your perspective, color your thinking. One moment that forces you to re-evaluate everything you think you know. Do you know who you are? Do you know what’s happened to you? Do you want to live this way? Do you know who you are? Do you know what’s happened to you? Do you want to live this way? “
— Cristina Yang, Grey’s S10;E17
This has been running through my head all day. I have been falling through space for weeks now, and I think it’s safe to say the first 9 weeks or so of 2016 have truly blown.
I’m still waking up, looking in the mirror every morning and thinking…
Six weeks later I’m still trying to process everything that happened in January. I’m still working my way through grief. I’m still stuck in denial because I’m absolutely sure there must be an alternate reality somewhere without all of these dead people. Some place or time that still has Robin Williams alive, okay, and making movies. David Bowie is still making music, and Alan Rickman is still alive.
And Brenda is still alive.
This doesn’t make sense. I don’t get stuck in denial. I dive into grief like falling into a ball pit. I swim around in it and I may even bounce through all the stages of grief, but I accept that something has happened, something has changed.
I keep falling back into “this doesn’t make sense”. And I know why, and I understand grieving. Probably better than I ever have in my life. I understand the process and the need for each stage of grief as a psych major back in college, and as someone that has lost a loved one.
A lot of loved ones actually. I understand why the risk of a divorce spikes after losing a child (two people never grieve the same way). I understand the need to process loss in order to move forward in your own life. The need to find closure, and meaning.
I get it. And I also know myself well enough to know I typically go for anger because it’s tangible. It’s active. It’s not passive, or helpless. I also know that part of what I’m trying to find my way through is because I got hit with nothing less than what could be described as the perfect storm.
Stress, loss….and it all started making me sicker and sicker.
Everyone in my life has had some major shifts in their lives in the last few months. And we’ve all just seen so many losses since the holidays. It’s like the universe hit the “discharge” button after the Winter holiday season.
So I’ve spent the last few weeks feeling like I’m falling through space. And getting sicker and sicker, until finally 3 days ago I took out my daith piercing in a last ditch effort to do something because I knew if I kept going the way I was, I would die.
Oh Xunnie….so dramatic you are!!
Maybe. But I’ve been there before. I do actually know what it feels like to know as you’re being transported by ambulance to the local trauma center that if you let go, you’ll die.
So, yes, three days later I am slowly coming back. I’m fighting. I’m trying. Slowly, I am getting stronger.
And I can look in my mirror and realize that I’m alive and she isn’t, and that doesn’t make sense yet, but hopefully it will soon.
Do you know who you are…..?