Wednesday, March 30, 2016

Sometimes "Goodbye" Takes a Really Long Time

I hope the people that love me want to be around me. And I hope the reason they want to be around me is simply because they choose to for no other reason than they like who I am, or maybe because it is just easy to. I wouldn’t want a life where people cling to me because I have something to hold over their heads, or because they are too afraid of me for some reason, or simply out of nothing more than perceived obligation.
As I write this, my biological father is dying  --  possibly in his last few days. I will not go see him. This is not an act of defiance, revenge, meanness, or some measure of something like any of that. I realize it may seem like it to some, and I am fine with that. Mostly. I suppose they are entitled to their uninformed opinions. I no longer have anything to prove or figure out. I am not going because my father blew it, and he blew it really big, and more than once. I said my final goodbye to him a few years ago, and I was fully aware at the time of all that meant and encompassed. I still feel I am, but I am realistic enough to understand that full awareness won’t come until he is literally gone. So for now, I feel complete.
am steeped in my thoughts, however. I find myself drenched in my memories of my angry, pissed off, self-righteous twenties; swirling around in my bewildered, self-discovering, transitional thirties; reminiscing and touching my transformational, self-loving, strengthened, liberating forties. But I am not really wanting to be here today -- 51. At once, I feel I wouldn’t change any of it, but am left wondering how I could have changed some of it so that I could have wanted to be with my father. The word “Dad” when I refer to him no longer comfortably, naturally rolls off my tongue. His other children, my half siblings, made the trek from the East Coast to be with him. (We are in California.) They have somehow remained in his good graces. I shudder to think what parts of their souls they had to give up to remain there. Or perhaps they are cut from the same cloth. Perhaps it is a combination. It is just conjecture on my part, and I cannot honestly say that I know. Whatever the case, what I do know for a fact is that in order to remain in step with people, we have to be in some sort of agreement with them, spoken or not.
What I am left with is that it did not have to be this way, and that is the disappointing part. That burn is cooled by knowing there was nothing more that I could do -- well, nothing more that I could do without turning into someone I wouldn’t like. I won’t sell myself short to assuage someone else’s control issues, or perpetuate their appetite for verbal cruelty, or live into someone else’s lies about who they think I am or should be. I will not change myself, injure my soul, in order to live into someone else’s needs for power. I will not ever succumb to lies told about me to help someone else look better and more powerful. I simply will not trek with that perpetuating party. So what I am left with at the end of the day, every day, is just myself. Me. And I have been okay with this for a very long time. The lie we tell ourselves is that we are left with more than that, and we try really hard for it to be more than that. When my father leaves this realm, he is going by himself. For all of the controlling and manipulating he has done for so long, and no matter how many might be by his bedside, he will be alone when he goes. That is the way of it.
I think I will always have this feeling of “it didn't have to be this way” and “what an incredible waste of time.” It was not always this way between my father and me. I was “Daddy’s Little Girl” for sure --  the apple of his eye. I thought he was so handsome, so strong, so smart, so kind  -- and then I got older and developed a mind of my own. I began to see things for myself, to hear things and understand what I was hearing from a more developed awareness. I grew my own voice, not of my mother’s or father’s teachings, but from my own thoughts. This was the beginning of a new relationship with my father, and it was one he would never accept. It was hard at first because I could not understand how someone so outspoken refused to understand why I would be so outspoken. Didn’t he see that he taught me to be this way? Wow, the irony! There is so much more to this of course, but it is pointless. Perhaps it will show up in another writing one day. So here we are.
Had I to go back and do it all over again though, I do not see it ending any differently. I can only move on and find the lesson. I do not subscribe to “everything happens for a reason.” I used to believe that, and then some terrible things happened, and I realized that a God of love would not cause terrible things to happen. The God of love that I believe in deals in “NOW.” So I understand that it is up to me to find the lessons for myself. Some are obvious immediately, and some come years later. But I will always be open, and I will always seek out the lesson even if it means creating one.
What I have learned in my 30-year (so far) inquiry is that I have to let people be who they are, just as they are. If I have something I want to teach or share, teach or share it gently, and only when it comes from a place of love --  never power or control. Some things I have learned from my father are because of him, and others are in spite of him. Others I learned from my mother in contrast. I have learned to use my voice, but I had to teach (and am still teaching) myself how to use it constructively and without force. I have learned to let my children be exactly who they are, even when I do not approve or agree. That leaves me free to just love them. I have learned that love does not have a price or a bounty. I have learned that it is my responsibility to show up for my children, no matter how old they are. I have learned that I cannot actually control others, and that I actually do not want to control anyone else. I have learned that I have no rights or responsibility over anyone’s happiness but my own. And… sometimes “goodbye” takes a really long time. 


Lastly, what I have learned is:

In our kitchen as a reminder. :)

and nothing more -- ever.

What I want to leave you with is hope. I want the readers to know, because it may come across a certain way in a brief blog post that separation from my father was easy or perhaps a quick process, or like I just said, “F_ it,” and walked away one day. It was none of those, and neither was it ever the desired outcome. It was simply necessary. I suspect you may be thinking, “Where is the hope in that?” It is right where it has always been and has always belonged. It is within ME, just as for you it would be within. When we lose hope, we perpetuate the family secrets, the family lies, tragedies, violence, abuses, etc. When we realize the hope is within, as individuals, as separate entities, we begin to do life on our own terms. This is how hope lives, and this is how we change future family dynamics. Go love your people without terms, without contract, without force. You will get all that back exponentially.
Do you, but with love and kindness, and no other intention. It all works out without all the unnecessary pain and struggling.  The clue to when you are on the wrong path is when you are wearing yourself out (and possibly the people around you)!
Not nearly “The End.”
Debora Lynn


Saturday, March 19, 2016

An Open Letter to Other Healthy People

Be careful who you judge.  Be careful how you judge.  Tides always turn.


Dear Other Healthy People,

I live with a mixed bag of autoimmune diseases, and have for many decades.  They are what we "spoonies" call "invisible illnesses."  In other words, most often we look just fine on the outside, but we feel like holy hell most of the time.  Because of this, people like me are misunderstood a lot.  We lose relationships because of it even.  We are thought to be lazy, disingenuous, feigning, or just outright lying about our symptoms and how shitty we feel.  We are thought to "use" our diagnoses to get out of social situations or work and chores. It's hard to even get physicians and other healthcare personnel to take us seriously, and more often than not, it takes many years to even get a diagnosis because of it.  So the lack of understanding, empathy, knowledge, and just general trust from loved ones and healthcare personnel is not only extremely frustrating, it's also dangerous.

Please don't tell me you understand when you clearly do not, and let's be honest, cannot. If you think it makes you mad when I tell you not to say this, imagine how angry it make ME when YOU say it!  There isn't much more aggravating than someone who tells me they understand, then turns around and is a perfect example of someone who clearly does not.  Just don't say it.  If you feel like you need to say something, search your heart first, or just don't say anything at all.  

If you love someone with an invisible illness, then love them just as they are.  It isn't going to change.  It isn't going to go away.  This is what you have.  This is what we have.  We may have good days, and we may be fortunate enough to go even very long periods feeling great!  But don't be a toxic cloud when we don't feel good and we aren't able to accomplish all that we'd like, or maybe even all that we'd promised. We are already tired of feeling guilty about what we have no control over.  Believe me, no one -- NO ONE -- beats themselves up more about not being able to do all that they want to do more than we do.  NO ONE!  So we surely don't need you spreading your nasty little comments and attitude around as well.  That serves nothing but your own ego about how much greater you must be, and how angry you obviously are that things are the way they are.  Thanks for absolutely nothing.

Have you ever thought about how hard it is to be a healthy, active, strong person one day, and then not be able to move the next, be in constant pain, and then have that rarely ever change?  In our heads, we are still those healthy, vibrant people -- just dying to get out and be who we really are.  It's a cruel joke.  It's physically and emotionally painful.  So take your disdainful looks, your snide comments, and your whispers behind our backs, and shove 'em! And now pray that you don't end up like this, because God knows that many of us have prayed for you to end up just like this so you can know, if even for a day, what this is like -- to be stuck in a body that refuses to cooperate, that is at war with itself, that inflicts constant pain and confusion, organ failures, threatened with early demise, and refuses to ever be replenished by any amount of rest and sleep.  I won't even get into the horrible medications and treatments we must face.  

None of this is to have anyone feel sorry for me or the rest of us.  It's simply to say, "Get a grip!" to the rest of you.  Either be all in with us, or get the hell out.  Seriously.  This is exactly how I feel.  We have enough to deal with to try to stay above ground and have a smile every day without having to deal with people that don't even deserve to be in our lives in the first place. So now you can't say you don't know.

If you have a relationship with me, the truth is you don't know what you're going to get from day to day, and even hour to hour.  I'm sorry, and I mean that.  It's hard, and I know it.  I also know I'm worth it, and so are the few who have stuck with me.  

Oh... I almost forgot.  We don't expect you to understand it all.  Just believe us and love us anyway.

Yours with Tenacity,
A Spoony named Debora Lynn