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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. 
 
 
 

MIA

04/20/2015

4 Comments

 
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.
 
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To make amends, here is a pic of 
Mr. Darcy. 

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! 
 

Four Days

04/10/2015

1 Comment

 
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. 

 

Dreams

04/09/2015

2 Comments

 
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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
 
 
 
 
I've always found this very beautiful. 
 
 
It's time for...
 
 
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In dealing with chronic illness (and life in general), I like to collect as many resources as possible to have at my disposal when I start to feel bogged down in the mire. Allow me to introduce to you an amazing human being and kick ass resource, Allison Massari. She has an incredible story to tell, and a radical way to be happy in spite of what's going on around you. You know, stuff that you can't control. Like whether your new doc is going to be dismissive and impatient with you. Or when it stings because friends don't invite you places anymore because you've declined so often, even though you really wanted to go. Or when your child is having a melt down and you get THE LOOK for the millionth time from people that says: Sheesh, if that were MY kid... and you just want to cry or tell those judgy mc-judgersons where to go. Those times. When it's so easy to feel defeated or angry or hurt. 

Allison's TedX Talk is a wonder to behold for many reasons. It is funny, engaging, heartbreaking, and powerful, and I hope you'll take the time to watch the whole thing. One of the things she said that stuck with me most, and that I watched over and over to make sure I wrote it down correctly, was that when she is challenged with those very things that I mentioned above (those My Inner 2 Year Old things) she stops herself, and with a deep breath and closed eyes, repeats to herself:

I will forever be ready to be kind. 
I want to be a place of nourishment. 
Even if I'm in pain, I'm determined to forgive. 
Even if I feel betrayed 
I WILL LOVE
~Allison Massari

Love. One of the only ways we can find true happiness inside ourselves is when we make the decision to love. To BE love. Not to say that you should be dismissing that you may feel hurt. Feel the hurt and acknowledge it. Give it the space it needs. Then, make the decision to love anyway. 

It's something so simple, yet so hard at the same time. It feels good in the moment of our righteous indignation to lash out, or give the silent treatment, etc. But the more we exercise our LOVE muscle instead of our HATE muscle, the easier it becomes. The more natural it feels. And, the more you find that you have a still, quiet place inside you that can be happy in spite of circumstance. 

Thank you, Allison, for being you and sharing your story and love with the world. 

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