Meet My Peeps

Hello!

In the last six years I have met some incredible people.  Connecting online with others who have chronic illness has been one of the greatest supports and encouragements of my journey.

For the whole of 2015 I will be deeply immersed in the Be.Leadership Programme.  And that means, a bit less time for blogging.  I have homework!  And readings! And deep thoughts to “thunk” (!)  I will still be here, doing what I do.  I just might not be doing it quite as frequently.  According to the calculator, I’ve been averaging four posts a week since I started blogging in May last year. That is a tough rate to match now that I am a bit busier.  But also, I feel like it’s a great opportunity to broaden the scope of the Chronic-ills of Rach.

I have called on ‘My People’ to see if anyone would like to share their story in this space.  I’m calling it the ‘Meet my Peeps Guest Series’.  And I am so chuffed that you will get to read the stories of some of the people so dear to my heart.  Each time I post from them, I will introduce them, tell you how we met and then you’ll hear their stories.  There is a diverse range of guests, some, like me, have a form of Dysautonomia, but we’ll be hearing from people with other chronic conditions too.  People with Invisible Illness, invisible disabilities and also people with conditions that are not invisible. They’ll be sharing with you their perspectives about getting through, getting on, and getting over the challenges they face. Welcome to the series, I can’t wait to see your responses to their heartfelt words.

Meet My Peeps

Big love to you from me, remember, I’m still here!  In between times, I’m just getting a little help from my friends. 🙂

Making Peace : Days Like These

I guess we all feel a bit awkward, thrust into a new group of people.  I think it is part of the human condition.  I went to so many schools when I was growing up that I did some crazy things trying to get people to notice me, to see who I was, beyond the be-spectacled, nerdy hand-raiser.  I was those things, but I was much more besides. I wanted them to get to know me faster, I wanted to find my kind of people and put myself out of my social purgatory misery.  Friends make the world go round.

I have a few dearly treasured friends these days.  People who are with me in person.  Supportive, wonderful women who are strong and wise and warm and funny.  Girls who ‘get me’.  I hope to have those friendships forever.

And then there are my online friends. I never thought I would have online friends. I didn’t know how to make friends online. But the people I have met through my support group for Dysautonomia and the people I have met through my blogging course, I now count among my best friends. I have been welcomed with open arms by people who ‘get me’. When a dear online friend died this year, it opened up a gaping wound of grief that has not closed.  It’s hard to understand how that is possible, but it is.  I’ve ‘met’ people who have changed my world from lonely to lovely. Warm fuzzy loveliness.  Connection instead of isolation.  These friendships are as real as those with people I can see and touch.

It is interesting to think that we have all met because of our struggles and shared pursuits. We reach out to each other from our solitude and we are no longer alone.  There is a deep resource of empathetic, beautiful souls out there; sharing experiences and caring for each other across the digital desert.  Beautiful people.  One day I would love to meet each one of them and wrap my arms around them in person.  Hello out there my friends.  You mean a lot to me.

I have a new group of friends, too.  A group that is just starting to build and grow.  People who read my words here.  I am so glad you are here. Everyone of us has difficulties we face and my hope is that no matter what yours are, you’ll find empathy here, with me.  I look forward to getting to know you, don’t be shy, make comments and I will respond, I promise.

Today I was listening to Janis Ian, one of the world’s most talented singer songwriters.  She wrote that song ‘At Seventeen’.  But she also sang this song.  I’d like to dedicate it today to my online friends.  Here’s to you out there, because even on ‘days like these’… you help me to make my peace.  I hope that I can help you make yours, too.

Dreams that you dream…

 

Have you ever fantastised about what you’d do if you won the lottery? Came into a huge inheritance from some long-lost relative? When I was little, our family could pass a whole car trip detailing exactly what we’d do if we won a million buckaroos.  It’s like that boiled sweet you can roll around your tongue for hours, savouring all that sweetness.  Just to imagine all the possibilities!

Yesterday I was scrolling through the latest posts on the page of a Dysautonomia support group.
And there it was. One of those questions. A big sky dreaming kind of question.

Screen Shot 2014-07-11 at 1.22.13 pm

At first, the question just hung there.  I guess, if the others were just like me, they were thinking things like “What’s the point of going there?”  or “OH!  Imagine that!”  or “Is that even possible?”  or “Don’t waste my time” …or maybe all of them in quick succession.  But then: it began to happen.  People began to dream of what they would do.  They let themselves picture that.  Cured.  No health issues. And the typing began.

Our group is large.  We have members as young as 16, up to the 60s.  Although, as you might imagine, there are less in the older age brackets.  What might a sick person wish to do given a ticket to good health?  Take on the world? Conquer Everest? Be a CEO?

No.

Here are some of the things people responded with:

Add subtitle text(7)

You see, as Belinda, one of our members, put it:

We don’t want to take over the world, we just want to be a part of it.

It’s hard to think about what we’d do if that day would come, because every day with a chronic illness is a lesson in disappointment.  Oh, still here.  Yep, still that way.  Uh-huh, no improvement there. You brace yourself for the reminder that comes every time you wake up.  Day after day.  But a day when none of those things were there to remind you of sickness?  Of never needing to worry about health issues ever again?  No advanced planning?  No pacing? No pushing through?  Oh, sweet heaven.  I don’t think health would be wasted on us the way youth is wasted on the young.

I think we’d have an advantage over the never-sick.  We’d remember every morning, what it was like to inhabit a body that doesn’t cooperate, that blindsides us and pulls nasty pranks.  We’d remember and be infinitely grateful.  And then we’d grin at life get stuck right in.  With gusto.  Into all the small normalities that you might find boring.  We’d get out of bed.  And walk.  Hike.  Run.  We’d play with the kids and help our neighbours.  We’d plant gardens and mow the lawns and make the beds.  We’d cook; slow style.  We’d drink and make merry, attend events, travel and embark on adventures.  We’d do all of it knowing how lucky we are, because somewhere out there, people would be stuck, just like we were. We’d get together and make a noise so loud, so that everyone could have whatever that cure was.  And yep.
We’d dance.

—————————————————

Thanks to Krassimir for asking the question, and to all the lovely people who did some dreaming.

Somewhere, over the rainbow, skies are blue…
and the dreams that you dared to dream, really do come true
.
The late Israel Kamakawiwo’Ole, singing our song: