Somewhere I belong

I want to heal, I want to feel
Like I’m close to something real
I want to find something I’ve wanted all along
Somewhere I belong

~ Linkin Park, Meteora album (2003) [affiliate links]

Growing up a very introverted, painfully shy missionary kid whose family moved around a lot, I never felt like I belonged anywhere.

A wall of hand-blown glass Bluebirds of Happiness at Terra Studio (Fayetteville, Ark), one of my most favorite places in the world, a spot where I feel very at home. (And a photo I don’t think I’ve shared before.) Sept. 2009.

I didn’t fit in with the neighbor kids when I was a tween, whose cultural references were foreign to me (I wasn’t allowed to watch TV as a kid, so there’s a whole swathe of popular culture I have zero knowledge of), or the kids who made fun of me crocheting in 7th grade (I started crocheting when I was five years old, and did it all the time!; would still do it if my hands allowed), or the teenagers in high school who had gone to school together since they were in kindergarten (and I was this weirdo with no social skills, having been mostly homeschooled up to then).

That not belonging changed when I went to college, and found teachers who nurtured me and places that accepted me and welcomed my talents: the newspaper, the literary arts magazine.

I found places I belonged after college (in Atlanta): working in the arts, attending writers’ groups, getting my master’s.

And even when hubs and I moved to a small town in Arkansas, whose residents are distrustful and wary of people “from off” (what they call outsiders), I still found my places there – with the artists and people involved in the community.

I thought when we moved back to Atlanta that all the friends I’d left behind would still be my friends. But that didn’t happen – they had gone on with their lives, and the space I used to fill in them was no longer open.

And before I could make new friends, and find a new place for myself, I got sick, and lost my ability to be in any of the places I’d inhabited before, left only with the four walls of my home and my online communities, with very rare outings.

And when I do go out these days, there are so many anxieties – How bad will traffic be? How many bumps in the road will we hit that will cause me extreme pain? Will there be food I can eat with my allergies? How long will I be able to participate? How long will I have to participate? Will I be able to participate? Will I remember people’s name(s)? Will they be offended if I don’t? Will I have to explain myself? Will I be able to handle the noises and the movement and the light? Will I lose my words? Will I annoy people with my needs? Will I be understood? Will there be somewhere I can sit down?

So, where do I belong?

Well, my friends, I belong with other patients.

Two Saturdays ago (February 8), my #MEAction Georgia chapter held a get-together. About seven patients attended (including me), accompanied by our friends and family / carers.

Some of the members of #MEAction Georgia, who were able to attend a get-together on February 8. Except for my hubs, who is next to me on the far right, all the patients are seated, and our family and caregivers are standing. If you’d like to see more pics from the gathering, check them out on SmugMug. (Photos in collection taken by Everett Cortland, Tracey Miller and Eliz Burlingame.)

And I had zero anxiety. I didn’t have to worry about the answer to any of the questions above (except riding in the car), because everyone there either experiences what I do (in different iterations, to be sure), or they deal with a loved one who experiences it. They more than understand – they comprehend. They live it!

I was greeted with so much love. I could eat without fear. Patients laid on the floor, or a couch, wrapped up in blankets. One person was hooked up to her I.V. Spouses chilled out in their loved ones’ wheelchairs. We laughed at things that only patients would understand.

When I started losing words and tried to apologize for it, I was told there was no need – because whoever I was talking to (yup, I’ve already forgotten!) is used to it!

Now the payment for having fun is a crash for all of us. (Hence this post being four days later than I intended.) I fully crashed fewer days than I expected, but my payment is my voice. It’s been gone for eleven days now. Again.

But the price is totally worth it to be somewhere I belong.

If you’re lost there’s a trail through the night
Don’t give up the ghost, don’t give up the fight. Don’t let go
…
If you’re thinking you might be sinking
I tell you I know it isn’t so. Hold on to me

~ Jess Chambers, “Full of Fire” [affiliate links]

Things you should read

I often run across articles and blog posts that I feel deserve to be shared (not necessarily all of them about ME or disability).

• If you don’t read anything else I’ve included here, please read Brianne Benness‘s piece Disease Begins Before Diagnosis, which she originally gave as a TedX Talk, on the premise “Lots of people are disabled but undiagnosed, so why don’t we hear many stories about that experience?” To which I, as a patient who had no idea what was going on with me, heartily concur!

• My #ChronicIllness pal Farrah Garland recently published “I Don’t Care How Much You Work” on her blog; it echoes many of the things I’ve been writing about our worth NOT being based on what we produce

• Another article by Angela Blanchard (who I included last month); this quote really hit me, and reminded me why I write this blog, despite it causing me physical and mental pain: “There’s this sensation when truth settles deeply inside, when our souls speak to us of work we must do.” – WHAT WE KEPT SILENT ABOUT

• An article in Glamour magazine that describes living with pain, always: What Are You Doing Right Now? I’m in Chronic Pain.

• An article in Shape magazine that is a good overview of Myalgic Encephalomyelitis (MEcfs): Chronic Fatigue Syndrome Is More Than Just Being Really Tired All the Time

• Self explanatory: Why Therapists Need To Read Disability Twitter

• Humorous blog about a serious topic: So now we can’t even say hi to a service dog?

• On A Journey Through the Fog, a fellow MEep writes: Please join us for ME Awareness Hour (on Twitter) – a great way to help with advocacy!

• The Grief Keeps Coming – another piece by Brianne Benness; as she says, “when you are chronically ill or dynamically disabled, you must constantly let go of the person you used to be”

• 46-minute documentary on Youtube: LEFT OUT, a visual, brutally honest story on life with ME/CFS and new research (English & German subtitles)

• My review on Pain Network of a TENS machine you can purchase on Amazon [affiliate link]! (Spoiler: it’s well worth the money!)

PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the same box.) Thanks!

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in over five years, and so far I get no disability benefits – and my 2012 laptop needs a new battery!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• by donating via paypal
• or sending me something from my Amazon wishlist (now conveniently separated into categories: Miscellaneous stuff., books for my hoard! , dSavannah’s health needs, low priority: crafty stuff, and music I’d like).

You can also help me by clicking my affiliate links – As an Amazon Associate [affiliate link] I earn from qualifying purchases. This means if you click a link, and buy something (not necessarily even something I’ve linked to), I supposedly get a wee percentage of the sale. Doesn’t cost you anything, and helps me support my living habit. (Note: links to my wishlist do not count, for whatever reason!)

I am also an affiliate for my web hoster, Lyrical Host. If you switch your site (which was soooo easy, even for brain-fogged me!) to them, or decide to start one, just use the code “dsblog10” at checkout and get 10% off your first hosting plan payment! It’s a win for all of us! And a huge THANK YOU! to their support people, who sorted out a coding issue with my blog – in the days Before ME I could have handled it easily, but these days? I could barely describe it, let alone fix it! They are awesome!!!!

Your support keeps me going, even in tough times. Thank you for stopping by my blog. And a big THANK YOU! to a former colleague who bought me 12 “coffees” at once on ko-fi.com. And thanks to my friend from college (how did we get so old?!??!) who sent me a movie off my wishlist, as well as an amazon gift card [affiliate link], which I am about to blow through!

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!