Thanks to Facebook's Memories feature that pops up in the notifications now, I got to revisit this little gem I wrote 6 years ago today. Not much, as well as everything, has changed since then at the same time.
Oh, caustic nature of the opening paragraph; my inner 2 year old raging! I had no answers back then, just pure frustration as to what was happening to me. I just want to give the me of 6 years ago a big hug.
The battle of letting go to gain acceptance and peace rages on (How oxymoronic is that). :)
Confessions of a recovering control freakJuly 14, 2009 at 10:35am
I don't know if you've ever had the pleasure of having a chronic health condition that required you to traipse all over town from doctor to doctor, finding that most of them are lacking their sensitivity chip, and you leave their office feeling worse than when you came. Licking your wounds you think: Gosh, I had it all wrong...I thought this was supposed to be a collaborative relationship between two adults where I knew my own body and they tried to help, but instead it's dysfunctional parent/child where I feel stupid and invalidated and he/she feels smart and superior and I leave hopeless. Hmm, who knew?!
*sigh* Okay, snarky rant over. So what does this have to teach me?
After a particularly demoralizing doctors visit a few months ago, I was finally able to release my frustration and cry. Tired of feeling I had to be perfect and strong and brave, I looked to the heavens and said: Okay, I give up! I am tired of beating my head against this monolith of a brick wall trying to get some help and find out what is wrong. I have limited control over this if any at all. I surrender. I'm done. It's in your hands!
And the peace that came over me was palpable.
In the recovery movement they call this letting go and letting God. In realizing we have limited control over most of what happens to us in life, we can find serenity. I can have control over my reaction to what happens to me, but not much else. In surrendering, I am free to focus on gratitude for all that I have been blessed with instead of focusing on what is missing.
Because nothing is missing.
Amidst the rush of worldly coming and goings, I observe how all endings become beginnings.
~16th verse of the Tao
Affirm: My body is perfect, born at precisely the right time, and this is my perfect age. I accept myself as I am, and I surrender to the natural course of my body's destiny.
Sorry I went MIA again. I had a little, perfect storm hit me and needed to lay low for awhile. Ever feel like that? :) If you are a #spoonie, I know you have! When and emotional upset hits me, I have to be extra careful about not over-doing-it, and practice super self care, or I'll loose even the few hours a day that I feel functional, for who knows how long. I've learned this the hard way. I've had some awesome people helping me through it, and I can't thank them enough.
This year,so far, has been funny. Every month there's been some sort of shock to my system, but with great learning and growth afterwards. When I don't fight against life and just let it be, I can see clearly how practicing forbearance leads to good stuff later. Life is going to have it's ups and downs. That's just the way it is. Weather it. Be still.
It's okay to feel br*ok*en.
And when the good times hit, appreciate it, soak it up and create lots of space inside for yourself. Space for it all. There's room.
A friend in one of my Facebook chronic pain groups posted this question for discussion: "What would you like to say to those who don't think our pain isn't that bad and/or we are faking our illness?"
I couldn't answer right away. I didn't know what to say and wanted to chew on it for awhile. Quite frankly, I've grown wearing of trying to make others understand. What do you say when you've been through the ringer with doctor after doctor insinuating you are a hypochondriac until they finally find evidence on an imaging study that proves otherwise? I can tell you what my inner two year old would like to say (you can find that here). But what, if anything, can be said that would truly help them understand what we, the chronically ill, face every day?
What to say to friends and family that roll their eyes and think you are "lazy" because you are unable to get out of bed until 9am. That just because you had decent sleep the night before, it is no guarantee you will be feeling well enough to do anything the next day. Or, maybe that extra sleep did afford you a few hours to get some things done, or go out and visit a friend, etc. That doesn't mean you'll be able to do it the next day, and if you over-did it when you were feeling good, the price to pay is your ass being grounded with pain and fatigue for days. How can we explain clearly and effectively that no matter how well we are taking care of ourselves, we really don't know what we are going to feel like on a daily basis. These flipping chronic invisible illnesses have minds of their own, and it's just as frustrating to us when we have to cancel plans, or that our lives lack consistency.
I couldn't think of a damned thing. I kept coming back to the truism that there is no way they can ever understand unless they themselves have been through it, so banging my head against a brick wall to do so is futile. It's important to remember too, so we can forgive those for their ignorance and not take what they say or do personally (much harder forgiving the doctors though...I'm working on it).
Then again, you never know what is going to reach somebody. Those times when you take a chance, reach out, or answer a question in a new way, and you finally see a glimmer of understanding in their eyes. You know something has shifted and you have helped someone move toward as good of an understanding as they can get about your illness. That feels pretty good.
Look at all the good Christine Miserandino's spoon theory has done. When I woke up this morning I found the above picture on my FB wall. That's my answer, I thought. It's practical and to the point. In the rare event that someone asks what having this illness is like I say:
1) Imagine feeling like you're coming down with the flu every. single. day.
2) Pushing through my pain today means I'll usually be in bed sicker tomorrow.
Example: Yesterday afternoon I was finally feeling well enough to clean my house. But I cleaned for 3 hours. Today I'm in bed, and it's taking all the energy I have to take my son to school and back. And I wanted to run an errand today. Nope, spent too many spoons yesterday.
So yeah, I can see the value in trying to help others understand, and I love fighting stigma. I want to also focus on the other side of the coin, which is learning to take the slings and arrows of others with grace. To realize and remind myself that they don't mean to be mean. They are just living their lives and doing the best they can like all of us. I never want resentment to take hold. “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.” ~Buddha
Working on being gentle, kind, and accepting of my limitations, and those of others, is taking a lot of my spoons right now. That and my new kitty, Tommy.
SHAMLESS OBLIGATORY KITTY SHOT!
More about him later. :)
PS. I may be down but I'm not out. Stigma, yah I'm talking to you. I'm coming for yo' ass.
I wanted to share something because quite frankly, I don't know what else to do with it except throw it out into the ether to see if anyone can relate.
I kinda don't know how to feel right now.
My family history is...complicated. Suffice to say we did NOT put the fun in dysfunctional. The basic setting: I was adopted by my widowed, maternal G'ma before I was one. My birth mom, Carol (G'ma's daughter, and legally my sister), never wanted children and my G'ma insisted I stay in the family rather than getting adopted out. If a family is only as sick as it's secrets, ours was at deaths door constantly. All of my families history is shrouded in mystery. Nobody ever would answer any questions I had. Heck, I didn't even know that Carol was my birth mom until a kid who lived down the street told me when I was 13. Seemed everyone knew but me. Why I wasn't told in the first place was, you guessed it, never explained to me.
Carol had moved away when I was three to Florida. I've seen her once since then, and she would call every year on my birthday and Christmas. After my G'ma passed away, I asked Carol why she gave me up to her, since their relationship was strained and she probably knew I'd be neglected. She said she figured I was better off with her since she herself was not "maternal."
Runs in the family I guess. I am certainly not unscathed. Vulnerability and trust will always be hard for me. But I pour love and attention on my kids copiously. Maybe they would say too much? :) I've always wondered: How come some people are able to break the chain of abuse and some just follow suit?
Anyway, what I am getting at is this: My Great G'ma died in 1980, my G'ma who raised me died in 2002, and now over the weekend I found out that Carol died of natural causes in her home, alone, July 2014. There are many questions that need answering. The obvious one being how come I am only finding out about this now. But that stuff will work itself out. Mostly, I am just kinda numb and wondering how I should be feeling. Thinking that although it's to be expected, it's still weird that there is this disconnect when someone dies in our family because nobody was ever close. Cordial, but distant. No weeping...nothing you'd usually expect when someone dies I guess. Three generations of family women gone in my lifetime, and I never knew them well. Each relationship strained and complicated. Each woman in the periphery of my existence. Each not capable of giving me the care and love I needed. But how could they give it to me, when they could not even give it to themselves?
I said I didn't know how to feel but I think I've figured it out in the process of writing this. I'm sad. Sad for them, for me, for what never was. For family secrets and the unnecessary burden of shame. Isolation and loneliness. Hardship, fear, and for lives half-lived.
Rest well fiery, talented, independent, stubborn women. I wish you had not all met tragic ends. I wish that wherever you are, you have found peace. Be free and at ease.
So take this moment...and be selfish
Worry not about the clouds that go by
'Cause all that matters...is your freedom
So keep warm my dear...Keep dry
~Alanis Morissette, Mary Jane
Imagine if you will, a mother guilt-ridden. The distress and grief on her face at the thought of letting her child down is palpable. She said she couldn't fulfill a promise she made to her child. How could she make amends? How much therapy was her child going to need later in life because of this?
Her child was 18 months old.
This is an actual question that was asked to Jennifer Senoir, the author of All Joy and No fun-The Paradox Of Modern Parenthood
, and she opens her talk with this story to a laughing crowd. But it's a knowing laughter. Because we parents know all too well the crazy making conflicting studies, advice columns, child care books, and tyrannical standards set up for the modern parent. Especially the modern mom, but we'll get back to that later.
Senior, a contributing editor at New York Magazine, has written a book that is so important to read and fully digest in this day and age. And I'm certainly not alone in thinking so. All Joy and No fun
spent 8 weeks on the New York Times best seller list, and it's popularity has not slowed down. She's been all over TV and radio (my favorites being NPR and Colbert), and offers potentially contentious findings such as, and I am definitely paraphrasing here: Parents should think about themselves more, stop pushing the goal of "happiness" on their kids, and stop worrying so much.
What? Sacrilege! When her book first came out, I thought she was going to be pounced on by the parenting community, like Ayelet Waldman
was in 2005 for writing the essay about loving her husband more than her kids. Many were ready to eat Waldman alive, while also heartily recognizing that putting your marriage first is healthy and good for the kids! But I've noticed no such vitriol with Seniors book. Even in my parenting groups, discussions of the book have been, well, surprisingly cordial. Perhaps we are so beyond tired of this racket we're in that we are finally ready to listen/read a parenting book that's not about how parents affect their kids, but a book about how kids affect their parents
. Permission to exhale, mom and dad!
Full disclosure, I'm a big fan if you couldn't tell. I pre ordered her book, and I'd been looking forward to her visit and talk for months. If you've seen any of her TV appearances or marvelous Ted Talk
, you know she does not disappoint. Funny, genuine, affable, and wicked smart, she explains the frustrations of modern parenting perfectly. From division of labor (forget date night, talk about who will do what and when, early and often ya'll!), to anxiety about our children's future (it matters not if your child gets into an Ive League school, it matters if they applied there in the first place). Steeped in sound research and wonderful anecdotal stories, her talk leaved me feeling like I'd been commiserating with a good friend for an hour. I arrived home feeling warm from shared laughter and tears, and with much to think about.
Like this. Moms: Maybe take a cue from the dads and try to mono instead of multi task, and don't try to live up to anyone else's standards but your own. I can't explain it any better than this quote from a review
of her book by Marisa Bellack of The Washington Post: "While Senior doesn’t set out to offer parenting advice, the Minnesota dad
[that she interviewed] comes close to what seems to be her concept of a model parent. He’s attentive to his kids yet doesn’t obsess about keeping them stimulated every moment, he takes care to preserve some time for himself, and he’s confident in his parenting decisions, declaring, “I am the standard.” He is the antidote to the problem with parenting today, as Senior sees it."
Wow. Being confident in our parenting decisions. Let that concept sink in for a minute!
What resonated with me the most, however, was when Senior started talking about the words Joy and Happiness, and how finding Meaning
in life may be a better, and a more attainable goal in life. Joy: Profound and deep connection. Our kids happiness: " [and self esteem] can be the byproduct of other things, but they cannot be goals unto themselves" as Senior says in her Ted Talk. Happiness, she says, is an unfair burden to make yourself responsible for, and for your children to try to achieve. Far better to teach them to be productive, and find meaning in their lives, and happiness maybe
could be a byproduct of that. Because here's the thing; some children, because of the temperament they are born with, will never be happy. But, teach them to be productive, helpful, kind, and fine some satisfaction in their work, maybe they've got a better chance at it.
This may sound a bit dire to some in our Reach-For-The-Stars culture. But we are stressing ourselves out, and I do believe we are setting our kids up for some disappointment when we make happiness such an all important goal. There's all this pressure to be happy all. the. time. It's not realistic and it's too ephemeral, too dependent on circumstance. It's okay to feel sad, mad, or dissatisfied. It's the human condition. It's The First Noble Truth
in Buddhism: In life, there is suffering. Second-Forth Noble Truths: There is a way out of suffering, and one way is to accept the ups and downs of life, and cultivate non attachment and non grasping of pleasurable feeling states, like happiness. It comes and goes. Making a point of doing something of value everyday, that's more in our control.
Last night we were watching Finding Nemo
with our son. We got to the part when Marlin, stressed out daddy fish, is talking to Dory and is so mad at himself, thinking he's let his son Nemo down. I felt Dory's response, in a way, sum's things up nicely:Marlin
: I promised I'd never let anything happen to him!Dory
: Hmm. That's a funny thing to promise.Marlin
: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.
Exactly. Not much fun for us parents, either.
To me, you meant everything. In a life that was filled with darkness, you were my light. Seeds of happiness, contentment, connection, and love were sown and grew whenever you would visit. They were my little perennials, dying in your absence, and springing to life at the mere mention of your coming.
When I was older, you'd take me to stay with you in San Francisco for two weeks. Two. Whole. Weeks! I was beside myself with joy to live a different reality than I was used to, and to have you all to myself! I remember you swinging me around and around to make me laugh (and when you told me I had gotten too big for it I felt heartbroken). You took me to the theater to see The Nutcracker, introduced me to your friends, and took me to the park. But some of my favorite memories are of us singing in the car together, because we listened to the same music and you loved to sing, just like I did. The Beatles, Bread, and Don McLean. Plus, show tunes! Sound Of Music, Fiddler On The Roof, Grease. Our voices blended and harmonized together perfectly. The day mom would come to pick me up was the day the music died for me, every time.
*A long long time ago
I can still remember how
That music used to make me smile
They say all it takes is one person to make a difference in someones life. One person that shows a little bit of kindness, concern, interest, etc. I would hear that phrase and scoff. Who was that person for me? Who cared enough to intervene? Why, or how, could anyone take a look at the little girl with the dirty clothes with holes, a sad little face filled with sorrow from neglect, and just turn and walk away?
It was you, of course. You were the one that made a difference. I'm fairly certain that if you had not existed in my world, I would not be here today. Why I am here, and to what end, I'm not sure. I never thought I'd live this long. Apparently this is common for people with CPTSD.
*And I love you so
The people ask me how
How I've lived 'till now
I tell them I don't know
I wonder, who was that person for you? I wish I could ask you that now. There are so many things I wish we could talk about.
As I grew older, I recognized the sadness in your eyes. The far off stares into the distance that betrayed your troubled mind. The stress of living a double life showing more and more as the years went by. I wish you could have lived long enough to see how different things are today. How there is so much more acceptance. You could just BE, not pretend, and not be made to feel guilty or deviant. At least for the most part. Things are not perfect, but they are getting better.
*And yes I know how lonely life can be
The shadows follow me
And the night won't set me free
But I don't let the evening get me down
Now that you're around me
You would have been 62 today. Every year I wonder what you would have been like, and how our relationship would have developed as grown ups. I like to picture you happy, surrounded by friends, teaching and singing to children, maybe in a relationship, and of course, still living in the city you loved.
Walking through a costume shop one day, I saw you were melancholy, I grabbed a magic wand, twirled it about your head, and asked what you'd wish for. "For Jesus to take me home" you said. Did you think, like me, you wouldn't be living so long, or hoping not to? Or did you know by then that you were dying? Either way, had things been then the way they are now, maybe you would not have been in such a hurry to leave. Maybe you could have been fully happy, like in my vision for you above.
AIDS took your life. Nowadays, many people live long lives with HIV. In the 80s, fear and misinformation ruled, and you were just another statistic ravaged and consumed by a new and horrible virus. The drugs were so costly, we couldn't donate enough blood to afford a consistent supply for you.
*The book of life is brief
And once a page is read
All but love is dead
This is my belief
I don't know if we have a specific purpose in this life. Were you, Jerry, put on this earth to help me? No, I don't think so. But beyond some seemingly grand purpose, I think that is what it's all about; us helping each other get through this thing called life. So when I think about my purpose, I think about you, and decide that if I can show my kids kindness, compassion, and that they are loved beyond measure, like you showed me, then that's all the purpose I need. You live on in me and the lives of my children.
I want to radiate loving kindness to myself and all beings, like you did. You were my first Metta teacher.
Around this time of year, I'm listening to our favorite songs. Right now I'm listening to Aubrey, by Bread. Next, the American Pie album, by Don McLean. And when I reach the song Vincent, I will be still. I'll close my eyes and feel you in the room with me. Because you always saw me, I mean really saw me, *with eyes that know the darkness in my soul. You understood. We were the same. I wasn't alone. I'm not alone still. And I want you to know:
*..I could have told you...
The world was never meant for one as beautiful as you.
*All italicized lyrics by Don McLean.
Goodness, I've gone too long without a post, eh? Content, content, content! I'm still trying to figure all this stuff out...fitting blogging into my schedule. It's more time consuming than I thought! I do a lot of research and have so many ideas that I am formulating together. But eventually I gotta put pen to paper.
To make amends, here is a pic of
He's fabulous and the Internet does love its cats, as do I.
He sure lives up to his name.
But I digress.
So, yeah...life. Busy, busy. On top of that is that, my CE (continuing education) credits for retaining my Rad Tech license are due at the end of the month and I have maybe half of them done. Gah! All of my concentration has been on that.
And my computer has been mind-blowingly...wheel of death... s.l.o.w. Grrrrr. Hubs says I need more RAM.
IT CROWD. My favorite show. :)
Anyway, I just quickly wanted to jot something down I was thinking about today. The reason I got into the health care field was because I wanted to help people. I still do. Hopefully I'll be able to go back to work part time soon, but I also have a desire to help people in an even larger, substantial way. I've been on both sides now: the carer, and the patient. If I felt strongly about helping people through the system, and comforting them the best I could before my illness, I certainly feel even more passionate about it now.
Today on twitter, I read about the #HealtheVoices15
summit that took place a few days ago, and got pumped. Pumped that these summits take place, and that there are so many other bloggers (and health care workers!) with the same passion as I have; to be a healthcare/patient/pain advocate! Not just for ourselves and our own chronic conditions, but for others as well so hopefully they wont have to go through some of the same BS we have gone through. There's a dying of compassion
going on in our broken system, as many of us know all too well. Psych Central
wrote a great wrap up of the event (thank you for posting it on twitter Josh Robbins
). One of the speakers there was Dr. Zubin Damania, and if you haven't heard of him yet, you've got to check him out. Not only is he a great speaker and incredibly talented/funny (no really!), he runs a ground breaking, compassionate, full-of-awesome clinic in Las Vegas called Turntable Health. One of the things he was mentioned to have said at the conference really stuck with me:
Doctors get paid to do procedures on you, not to listen to you.
Read that again. Sucky, and true. I searched long and hard for my awesome docs that DO listen. They are out there. But over all...yeah, the reality of the above statement has to change. Our healthcare system needs a major overhaul.
And I want to be a part of it.
Sharing is caring!
Just four days. And oh how wonderful they were.
For whatever reason, the past 4 days have been good for me health-wise. As in, I almost felt like my old self again. My pain was low and my energy was up. I was ecstatic! BUT, I knew to pace myself and not get too crazy - doing too much eventually causes a bad pain day or two. So I took it slow, and was so grateful. I can't remember the last time I was feeling well FOUR WHOLE DAYS in a row! I never once climbed back in to bed with pain and fatigue during the day. I was up all day until bed time! And I was able to accomplish 2, 3, 4 errands a day! Last night when it was Ns open house for Kindergarten, I knew I was going to be able to attend! It sounds so small, but all of this is a HUGE deal in the life of a chronically ill (CI) person, as most of the time we don't know how we are going to be feeling minute by minute, let alone day by day. In the back of my mind, I knew not to become attached to it, this awesome way I was feeling. I know all too well how things can turn on a dime.
And turn they did. Inexplicably, I woke up with terrible pain and fatigue this morning.
Did I over do it after all? Is my Humira/meds wearing off? These are questions commonly asked by people with CI. Sometimes you can point to some definite cause, but most of the time there doesn't seem to be a rhyme or reason to it. The roller coaster of CI, and autoimmune diseases in general, creates a crazy tightrope to walk, with many unanswered questions lying in the rubble of our new normal lives. It seems useless to ask "WHY?"
But we do. I do. And when i get tired of grasping at straws, checking my pain chart, trying connect the dots to some conclusion that might help me next time, I take a deep breath, take my meds, crawl into bed, and try to just BE. No negative self talk, no blaming or judging what is happening. Just BE.
Just four days. Just long enough for me to be acutely reminded of my past life as a well person, taking for granted my health. And before I can BE, I must grieve.
Decade 1: I have big dreams and I will make them come true!
Decade 2: Am I good enough for my dreams?
Decade 3: Having dreams is a waste of time.
Decade 4: Dreams may not come true, but I can and will effect change in my life
Decade 5: My dreams were born of the things I enjoy doing the most, and I'm going to spend the rest of my time doing those things for the greater good!
The take away: Instead of happiness, search for something that gives your life meaning
"The old dreams were good dreams; they didn't work out, but glad I had them." ~Clint Eastwood as Robert Kincaid in Bridges of Madison County.
What's your opinion about hopes and dreams?
This post was inspired by a Life In Focus photography group on FB that offers photography project(s) 1-2x/year. This weeks topic was Hopes and Dreams. xo