New Blog

'Ello Mettaheads!

Posts below are from the old blog that have been transferred over. Welcome to the new Heavy Metta site. xo Onward!

 

My Inner 2 Year Old ~ Rant 1

I'm sitting here looking at the health care job board, knowing full well I won't be able to work in my present state. It's wishful thinking I suppose. When you are struck ill halfway through your schooling (as well as one month into a marriage), and you never really had a chance to even get your new career going after all of your hard work, it's hard to accept the fact that you may never be able to work again in the capacity you thought you would. Some days I feel better, and get tricked into thinking I can tackle working in a hospital or clinic, helping others. Then, like on days like today, I am bed bound and stuck wondering how hell I can hold down a job when it takes all of my energy to take care of myself. There's no way.

So what do I do? Work for myself here at home? Doing what? Train for a new career? How? These questions plague me every day while my self worth plummets and the disappointment I feel, and that I am sure my family feels, threatens to eat me alive.

I'm unable to contribute financially to the family, leaving my husband with the sole responsibly that I know he does not want. He is also responsible for much of the care of our son (almost 5 years old and active as all get out), something he never bargained on either. Then there is the disappointment my son must feel because mama can't keep up or take him places or even play around the house some days. The guilt from this can be unbearable.

It's not your fault, people say who can half way understand what it's like. You can't control it, you are sick. You are doing the best you can. I know it's true, and some days I can buy that. Some days I can be mindful, have equanimity and feel half way at peace with this. Everybody's got something, right? This is just my “something.“ But my “something” affects those around me, and I see them suffering and that sucks. What possible incentive do they have to stay when I feel incapable of being a decent wife and mother? 

I get hard on myself and think surely there must be something I am doing wrong, or there is someway I can fix this. And if not, what is there to learn from it all? Life is not fair? That it's beautiful anyway? That I am worthy of love and belonging no matter what? Yes, that all sounds hunky-dorey. I am working on believing that to my core.

But on days when the pain, dizziness, confusion and malaise threaten to drown me, when I feel acutely aware of the burden I've put on others, and when friends or family disappear from my life because they can't understand and treat you like you are contagious, I can't talk my way into feeling better, and that all is and will be well.

But maybe that's not so bad.

For years I have been stuffing feelings and trying to be strong. Even before I got sick, because I was raised to believe they were “bad.” Suck it up, or shut up. I am incapable of that anymore. For the past year, thanks for therapy and lots of reading on mindfulness and chronic illness, I've been allowing myself to feel sad or angry when I need to. I'll get back to love and Namaste later, right now I need to feel the hurt, the loneliness, the betrayal, the FEAR of it all. I'm getting out of my head (which is a safe place to be, intellectualizing things so you don't feel hurt), and into my body where the raw feelings lay in wait for attention. It's been hard and painful, and oh so necessary. Instead of unexpected reactions shooting out of myself at inappropriate times, I sit in the feelings I'm having, at the time I'm having them, investigate, and allow. Well, I'm working on it anyway. 

So, here I am having a very hard day, admitting it to myself and others, and feeling like it's okay. Here I am finally writing it down. Here I am thinking about quitting Facebook because I am tired of the disingenuous, postcard lives we live there. And finally, here i am allowing myself to cry for my many losses. A little. 

At the same time, I know that everything is temporary, and tomorrow is another day. That things I never thought I would be able to survive, I have. That I do have people in my life who care about me and are trying just as hard as I am. And most of all, that even when we are walking through a swamp of drying cement with nothing to eat but a shit sandwich, the only way out of difficulty is through it.
 

Start Where You Are

11/20/2014

I love to write, so it's not like twisting my arm to do so. However my bully voice would drown out positive one, yelling that I wasn't "ready." But when are we ever "ready"? When did I get caught up in the lie (again) that everything had to be perfectly aligned before I could more forward?

 


The last straw and key to unlocking my self imposed cage came from a blog I love to read. See that last picture there on the far right? That's from the website Momastery, written by Glennon Doyle Melton, who is all things awesome, funny, real, & with a heart as big as all outdoors. I read this on her site, and I decided I was putting one foot in front of the other to make things happen. Whenever I've done this in the past, good things happen.

The universe rewards action. I'm ready. Or maybe I'm not. So what? Here we go.

~Jen xo

Love Will Thaw

04/03/2015

Screen Shot 2016-10-09 at 3.04.17 PM.png

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. 

~Jen xo

You can find Allison: http://www.allisonmassari.com/
Twitter: @allisonmassari
FB: https://www.facebook.com/allison.massari

Dreams

04/09/2015

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

~Jen xo

Four Days

04/10/2015

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. 

Jerry 1953-1987

04/27/2015

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. 

~Jen xo

Death And Other Quandaries

05/26/2015

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  

xo

Explaining Chronic Invisible Illness/Is It Worth It?

06/02/2015

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 ofthrowing 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. 

~Jen XO

PS. I may be down but I'm not out. Stigma... yah I'm talking to you. I'm coming for yo' ass. 

Perfect Storms

06/30/2015

1 Comment

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. 

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

~Rumi

~Jen xo

1 Comment