A Little Dose of Reality

        This week, I want to approach something of a bit of a sensitive nature.  I truly hope that those for whom it might be a bit triggering will allow me to finish my point before giving up on me, because it's about how we face our own mortality when - well, faced with our own mortality.  It really shouldn't be too bad, but I like to give people the heads up.

        Earlier last week I came across a post shared by one of the chronic pain/illness awareness Pages I follow on Facebook.  I do feel I need to mention that one really does need to be careful of the Pages one follows regarding such things, because sometimes the general perspectives, feelings, and emotional mindsets shared can either be comforting or triggering, especially in the long run.  Normally I'm not bothered by this Page's posts, but as I've been feeling a bit drained, pained, and - some other related, rhyming word - my perspective was a bit blue-gray, and it really sort of sucked what positivity I might have had left, right out of me.

To be honest, scrolling down my Pages Feeds lately

has been rather miserable, for some reason!

I dearly hope the admins of those Pages begin to feel better soon -

even the ones not related to physical/mental health!

        This particular post was about how the person behind the words was tired of the misery; the lack of understanding by loved ones; the lack of hope for a cure; and so on.  It did strike a chord in me, and I decided to comment in my typically-laconic, simple way (yes, that was said tongue-in-cheek).  I'm going to share my response with you, because it matters to me, and maybe someone who reads this can come to understand it for themselves, and maybe benefit through some self-discovery.

      "Realizing there won't be a cure, working through the grieving of my own life, and adjusting my perspective has actually been freeing. I had no idea it was possible, but I've begun to let go of the tooth-and-nail fight, and the feeling poignantly alone, and allow things to just be what they are, which allows me to instead of focusing on the agony and horror of every moment, embrace what I've left. I work to do what I can while I can, and make the most of what is in my reach, as limited as it may be.

      "Each day brings new challenges and new failures of function, but I'm pressed by the urgency of limited time, which means my energy is more about living than dying. It still hurts, like nothing I could have ever imagined, but I would rather go out focused on leaving a positive legacy of grace than go out kicking and screaming.

      "Changing that perspective has saved me, as I was reaching the point I could see no reason to go on fighting. I now see the reason. I hope that for all of us."

        My friends, please understand that of course this was a simplified version of my journey through all of this, especially this past year, as I've shared along the way, here in the blog.  It has taken a lot of mental and emotional processing, and frankly, continual choice to make this happen.  I don't always feel this every moment, and some days and nights are better than others. 

        October through December/January are typically difficult months for me, as it is winter where I live, and between the darkened days; longer nights; sometimes bitter cold and random weather; and a lot of opportunities to work through some griefs through anniversaries, significant days and the Holidays; at times it feels like a continual onslaught of exhausting emotions, and even depression.  I've often called it, "The Dark Ages of the Year," and depending on the circumstances of a particular year, it can be brutal.

       On the other hand, the experiences of these times can be illuminating and valuable, if challenging.  It's true that sometimes the only way to feel like I can keep going is to focus on what keeps me going.  By no means is this typically an easy task in the heart of a personal time of darkness, but it really is the only way for me to feel my way through the abyss and find light and solid ground, again.
       
        The fact is, there has recently been more of a focus on research for connective tissue disorders like EDS, but awareness, understanding, and acceptance is very low, even among those who specialize or are even familiar with that field of medicine.  And my insurance still won't even approve the genetic testing, nor palliative care currently available, but we can only do our best, right?

        I'm not trying to complain, but to help demonstrate my point.  Currently, there is no cure, no way to slow the progress of degeneration, and no way to stop some of the more bothersome and challenging issues like the pain and dysautonomia which can be debilitating and even life-threatening in some cases.  I'm watching my body slowly reject its own life, and there is nothing I can do about it!  So yes, there have been times when that question has come up: what is the point of continuing on, when the living and the ending will likely be so cruel?

        This is where my inadvertent stroke of serendipity comes in, in the form of having had some training in mindfulness and a process called working toward "radical acceptance", in a class I'd not expected, nor intended to take!  Basically, the class helped me understand the value of simply focusing on this moment, allowing things to just be as they are, and letting go of the instinct to fight against pain, fear, and all the emotions which keep us from moving forward.  I began taking that to heart in my grief and fear, and working toward just doing what I can, finding and accepting help when needed, and just letting the rest go.  Again and again, I've had to remind myself of that process, and simply hope for the best.

But then, the real shift in perspective.

        You see, when my parents each died, I felt a bit scornful of their circumstances, and I made the goal to not go out the way they did!  That might seem harsh, but grief does strange things to us, sometimes.  As I became sick, those feelings came back to me, and I realized that if I was going to live up to that goal, I was going to need to do some work!  And honestly, I've no idea if I'll go out in peace, grace, and dignity, or just what; and yes, there are moments which threaten to overwhelm me, especially when a bipolar depression hits and my feet get knocked out from under me in the dark.  But yes, I'd rather have tried to leave this world better for having been in it, than to simply exist and die in misery! 

        The only way I can see to accomplish that is to accept my limitations, and make the most of working around them that I can!  No, I can't do what I'd always wanted to do, but I can find a way to make positive compromises, and still find joy!  I can still create and share light and love in this world, however that must be. What a gift, that I have the understanding to do so!  And what a beautiful opportunity, to share that hopeful optimism with you, so that perhaps we can support each other on that path toward a better world!

        We individuals tend to think that there is no way we can affect greater change in the world, and yet... think about it?  In the course of 3 years, your life has been affected by mine in some, small way, as have literally thousands of others, through the PB Project, according to stats via the PB Project Community Facebook Page.   There have been many more than are seen to the public, and I know there are many who follow via email but I don't have those stats available to me.  Either way, if you only look at those who have directly touched the PB Project, there are thousands of people, all over the world, who have done so!  That means, in a couple of hours each day, for over 3 years, I've done that much, simply by logging into a website and sharing things that matter to me.  And I know others who have taken that as inspiration and used it to spread that type of energy, elsewhere!

        Just...think about that for a moment.  In that amount of time dedicated to something so simple, you could do that, too.  Imagine what the world could have in it if each of us did something within the realm of our influence, even during things we already do each day?

• If you opened doors for people everywhere you went, smiled, and greeted them warmly, each day?
• If you directly expressed gratitude in some form for people whose lives touched yours, each day?
• If you could use your skills to creatively connect needs or desires with things others can provide, in a positive, uplifting way?
• If you could compassionately validate those leaving comments on some kind of post or article, even if the exchange is passionate or negative and you feel emotional, before leaving your message?
• Or, even while going down the comment streams wherever you lurk, finding comments which seem could use a virtual hug, and leaving one for a stranger as though you were a secret, guardian angel touching their shoulder with reassurance that there is still good in the world?

        Sound a little hokey?
        Fair enough.
        But how would your day change if you received such a gift?
        Just an idea.
        Sometimes a little dose of reality can be a positive thing.

        Better days ahead, my friends!