A GLIMPSE BENEATH THE MASK

There are times you get a glimpse.

Just for a moment you get to see..

how far you've come,

and how far you've yet to go.

Support groups are wonderful. There are people around you that know and understand what you're going through. You can relax, let your guard down and know that the vulnerability that you feel is in a safe place.

Most of us still have those pesky walls in place. It's easier to keep the guard up. You really don't want to admit when the pain and fatigue are at their worst how weak and powerless you really feel.

"I'm hanging in there."

"I've been better."

"I'm still smiling."

Yeah, right.

Every once in awhile someone who is newly diagnosed and still struggling comes in and exposes that raw emotion that we try so hard to keep under wraps. While it's wonderful to help and counsel someone, it's a stark reminder of what is bubbling just underneath that carefully crafted surface.

As I'm telling someone that they will find their purpose through all of this and that joy is possible, I realize how far I've come since first being diagnosed. Helping someone find their way out of the black hole and knowing there is light at the end of the tunnel is gratifying.

But it's not that simple.

There are still days that raw emotion still haunts me. I know that I still struggle with the loss of the job that I loved. There is still a part of me that identifies with my career. The mourning process, while not as bad as it was, is still there. While those feelings aren't front and center anymore I still have them. 

There is nothing easy about chronic illness. It's like there is a constant reminder that your body could betray you at any moment. I feel always on guard, ever vigilant and ever mindful that a new symptom can pop up at any moment. It's a fine line that you walk...I want to be aware but I don't want to be overly cautious. 

The walls that are constructed so that the world doesn't see your weakness also protect you against it. Maybe they need to be there so that you are able to progress, grow and keep the helplessness that chronic pain can bring at bay. I think that masks and walls are sometimes given a bad rap. 

Seeing that person struggle with the newness of all of this brings a few issues right back home.

And I'm not inviting them for a sleepover.

WE CAN'T AFFORD TO BE APATHETIC

Shoulda.

Woulda.

Coulda.

I wonder if technology has been good to us as a society. In one respect we have the ability to be incredibly well-informed. On the other hand, it makes us incredibly apathetic.

Or do we really just not care anymore?

Have we become so well-informed that we are jaded to the process? Is it because we realize that we have no control over the powers that be? I grew up in the 60's and 70's and we believed we could implement change if we were loud enough or organized enough. We cared so much about social issues.  Have we seen so much that we don't believe it anymore? Do we have access to too much information?

That's difficult to believe.

And I don't want to believe it.

There are people that devote their lives to the cause. Their work causes them sleepless nights and subsequent crashes of fatigue, pain and migraines. The people that put together organizations and forums for our benefit do this without thought to themselves. They want a place where we can go for help and to guard us against medical injustices. They hope, beyond all hope, they can get some research money to find out why these illnesses are so devastating to all of us.

They ask one thing in return.

They ask to recruit others to the cause to sign petitions, write letters or just do what you can and if you're too disabled to do anything, ask someone else to help. If we could organize like the gay and lesbian community did for AIDS or like they did for MS it would an incredibly loud voice.  It is so powerful to have numbers of people clamoring for something to be done for them; to get answers and awareness. We have a huge percentage of the population that have been stricken with PTSD, Chronic Fatigue/ME or Fibromyalgia but instead of researching and putting a huge emphasis on it, a huge amount of money is spent on the latest pill for male erections.

I make light of it.

But it's true.

Please visit this website (put the cursor over website and you'll see the link) and read the letter that will be sent. The site also includes the twitter handles so you can tweet as often as possible the link to the letter so that you can bring awareness. We need to bond together because all of the "invisible illnesses" are in the line of fire.

What has happened to the chronic pain and fatigue community? We need to spread the word because we are in danger of our "syndromes" being labeled as psychogenic. We need to stop this in it's tracks. 

Please, even if it's from your bed, please let your feelings about this be known. It all has to do with insurance companies not wanting to pay out and if this can be "controlled" by cognitive behavioral therapy and a couple of antidepressants all the better. 

What will happen when they have their way?

They will shove a couple of antidepressants at us and send us on our way.

On our own and labeled again.

And once again it's all in our head.

And the best part?

They won't have to pay out to treat us.

HELP IS A FOUR LETTER WORD

Help.

It's just not for the Beatles anymore.

Why is it so easy to help others but so very difficult to ask for help ourselves? It's almost as if the very word "help" gets stuck in our throats and it's there.......it's there.........but were still not quite able to say the words. It's not just the words either. Doing for others is such a wonderful blessing. It lifts our spirits and gives meaning to our existence. 

Why then is it so difficult to accept?

Maybe it's the admission that we are not quite perfect. No one likes to admit they they don't have their lives quite in their control. Maybe the admission of needing help makes us feel weak and vulnerable. Maybe it's not the admission but the act of receiving. 

Does receiving make us feel not only weak but obligated? Or is it the imposition?

No one likes to impose on other peoples lives. Well, I shouldn't say no one. I know people that have no problem asking for anything. They can't do for themselves so they depend on other people's good will to survive. It's the ever-present drama that keeps them going. It's a drug in their veins and without it they feel meaningless. If life isn't high intensity or high drama then they feel the need to create it.

I just wouldn't want to be lumped into that category.

I guess we all sell ourselves short at times. The people I know, the friends and family, would probably drop everything to help me. They wouldn't find it an imposition, they would do it out of love.  Now I'm rambling but maybe it's the outpouring of unconditional love that's hard to accept. It's beautiful, amazing and very humbling. 

In real estate I used to break everything down to the ridiculous. Maybe that's what I'm doing here. If I break it down far enough I might be able to find the reason it's so difficult to accept help. 

So let's keep breaking it down.

Humbling. 

Accepting help is humbling so if that's the case then it's pride that keeps us from asking. We portray ourselves in a certain way. We all have this idea of our "image." Suddenly we find that image crumbling and there is a sense of shame that follows. Going to the great lengths that we do to maintain our own personal pride is counter productive to our health. 

Imposing. 

We don't want to inconvenience others so if that's the case we don't feel worthy to accept help from others.

So is that it? 

We have too much pride and don't feel worthy of the help?

There's an old saying. If you see a turtle on top of the fence post, you know he had some help. I think the idea is to look at help in a different manner. If help makes you feel weak then don't look at it like that.

We all need support to get where we are going in this life. Support is the pillow that we sink into at the end of the day. It gives us rest and it gives us comfort. Sometimes all the support in the world can't help us with the pain or discomfort we feel but what it can do is helps us through those times. The path that we walk on is filled with pain but the support that we receive from others can help buffer those times. We may feel out of control or weak. We may feel awkward. We may feel like an inconvenience. We may feel many things that don't fit well and feel uncomfortable.

But.

There is still one simple truth of this universe.

We can't get by without each other.

Think about it. We need others for the very physical aspects of our daily lives; our basic necessities like heat for our homes, the grocery store, gasoline.....everything we consume or need depends on other people. We need others for our emotional nurturing as well. When we came into this world we had love and comfort. We put such a high value on our own independence that we virtually trained ourselves to believe that support isn't necessary. 

When it comes right down to it I think the biggest reason we don't ask for help is because down deep we fear rejection. It comes down to rejection and vulnerability. What if we go through all of this and swallow our pride, ask for help and then we're told no.

Is it the "no" that is at the root of it all?

Maybe that's it.

We're afraid of no.

Great. 

Now I have really done it.

I've made myself afraid to raise my hand.

Hayzell at Possibilism.org is hosting the blog carnival and thanks to her for inviting me!