Thursday, March 21, 2019

It's Time to Say Goodbye

It's time for the last page of this blog, a place that has held so many experiences and memories.

Thank you to all my subscribers and readers.

Thank you to all my commenters.

Thank you for the sweet gifts and the PIE!

Thank you most of all for being  huge part of my life.

This blog may be ending, but stay tuned for a link to the next chapter of my life.

Love to all.

Wednesday, November 07, 2018

What I Learned From Freddie Mercury

I haven't written on this blog in over a year. I've been sick again. So sick, and emotionally worn out. When I used to write quite often about it, everyone seemed tired of hearing about it, telling me it shouldn't consume my life, but they weren't here holding my hair while I threw up from two years of a bad gallbladder, six years of fighting Lyme disease, Babesia, Ehrlichia, and whatever bugs that tick spat into my bloodstream. Do yoga, meditation, this herb, that herb, what are you complaining about, just try!

If you only knew how much I try! And how much the chronic and terminal illness community tries. Trust me, we're desperate for that thing that works. We've spent a fortune on it.

So I just haven't written nearly as much as I wanted to while thinking the most dark, awful things, with no real trust or faith to let them out anymore. 

Then the ** MASSIVE EXHILARATION ** when I decided to quit taking antibiotics and see how it went. I'd been taking 30 pills and infusions and shots since about 2012, and I've been off them for a little over a year. I felt so. much. BETTER.  

At first. 

I've been having frequent flares, vicious and longer, but right now, I'm not willing to put my body back through the hell it had to go through to get over the biggest hurdles of Lyme disease, etc. Now at least I can drive, I can get up and type sometimes, I can run my Bead Destash Group with an understanding bunch of people who know their packages will likely be a little late, but always filled with extras. I can sometimes run errands, go to the pool and swim, and Rick planned a trip for us in January to celebrate my 50th birthday (which is in March, but taking advantage of some school time off, and I love winter), so I'll get to see how plane travel affects me. I MISS my traveling days and want them back.

Surprise, surprise! I can't wait to see what this looks like in January! I hope it snows!

Now to What I Learned From Freddie Mercury.

I watched the trailer for "Bohemian Rhapsody" last night again, a movie I've long awaited. I grew up in high school in the '80s, and Queen music rocked from our pep rallies, the metal bleachers threatening to crash down to our exuberant stomping and clapping and chanting to "We Will Rock You". 

I found Queen at the 1985 LIVE AID concert and was  blown away by this group of four people. No pyrotechnics. No back up dancers. No cell phones waving around, but hands clapping exuberantly and everyone singing, fully in the moment. Just Freddie showing up for his gig and pulling the house down. 

These people had been standing in July heat cheek-to-jowl for six hours and were so freaking ready and present for Queen, and it touched me like ... well, I can't put it into words!  Watching a person who felt so badly about himself and his appearance growing up to just NAIL lyrics and notes and become such a legend ... there was a lesson there. Life can be short, but it can be filled with wonder. 

When you think you aren't worth anything, haven't accomplished anything -- sit down with a pen and paper and write one list -- Things I Have Done. Then really think. Are you a parent, military personnel, a veteran, a person who's developed a community online, no matter how small, that you feel good about? Have you raised a child, sent flowers to a friend, kept up with someone in email even when they don't always answer back? Do you read, do you have a hobby, do you strive to excel at something, even if it's not burning dinner? All of these are things to be proud of. NO ONE should feel afraid to post when they are feeling scared about a life situation or are down because they feel horrible and always feel horrible

Some of my friends (and myself) have been unfriended, messaged, emailed, that we are drama queens for sharing our feelings on social media, looking for woe-is-me attention.

Hmm. That's OK. They're doing them. I'm doing me.

For some, social media is where their strength comes from. Our groups, our core group of followers, the people who have also been afraid to say they feel the same way. We help each other. We SHOULD be helping each other, not as armchair doctors, but as friends. Just reading what we write, making a comment of support, and (important) make a note to check in on that friend in a week or two. I'm here to say, those messages later on, asking how I'm doing, have sometimes saved me. Often saved me. 

Lastly on this bit; just because "someone else has it worse" is not an excuse to feel bad about posting. You are you. You are experiencing something hard; you shouldn't be comparing your life to anyone else's! Your feelings are valid no matter what level the problem is. 

Likewise, no one should feel they have to share a thing but happiness and cheer on their feeds! I'm sure it's what we all aim for! I know that when I am gritting my teeth, still awake after 56 hours, in screaming pain, I try to post fun things and like other people's posts. How many of you do that? 

It doesn't mean we're not hurting. 

It doesn't mean we're faking it.

It means we are trying to participate in the world. Right now, this is my world. I am sick again, things are a bit hard here at home, and I am trying to gut through it without killing my liver and kidneys with narcotics, muscle relaxers, neurological fixers, brain fog fixers. It's all a bit much! So I post pictures that I've saved on my computer during healthier times so I can pull them up on Facebook and just quickly post. Just to be there, part of the mass of people I've met online. 

I'm still hurting. Some days way more than you can ever imagine, way more than I have ever posted, and I have posted a LOT on Facebook and on my lonely, neglected blog about it. I'm tired of it, sure. So are you, I'm sure. But we all need a hand up sometimes. Sometimes a little more often than not. Maybe one day, you will, too, and I hope to be there to help. 

If you made it this far (and I'd love to know if you did) -- ultimately we do not know what a person is going through. Social media is superficial, but it can also dig deep into a person's soul, and it's sometimes a cry for help, a plea for acknowledgement (again), a kind word and a check in now and then. I know I appreciate it from the bottom of my heart, and I am shouting out to some people (they know who they are!) who have literally saved my life recently. I'm also shouting out to all the other people out there who feel the same way about their own lives. 

Freddie Mercury chose not to tell people he was dying until the day before he passed. I admire his courage and his work ethic that kept him moving to the next song, and the next. For some of us, our words on social media are our message about out pain and our fears -- our way of getting to the next song, and the next. We may not have his incredible talent, showmanship, and vocal range, (although I know a lot of you do, you creative bunch!) but we have each other here. 

You're never alone. 

Be kind to each other. Love to all.

Wednesday, September 20, 2017

Imperfection is Perfection

One of the best friends anyone could hope to have I've only met once.

When I first started beading, Mecca was the Bead and Button shopping days.  I had NO idea what I was getting into, but I was starting out like gangbusters with my business, had a wide-open budget, and lordy lordy, stars in my eyes.

Allegra is the dearest of dear to me -- a friend, a surrogate mother, a confidante, a teacher, a mentor. It was no surprise when I knocked on her hotel door and we literally jumped up and down like school children. Two happier people were not in that hotel (including the ladies buying up all the beads!). She, her husband, and a small group of friends who bonded when Yahoo Groups ruled and Facebook didn't exist spent glorious days shopping and relaxing over occasionally raucous nights dining out. Our lovely guide, Ann, lived in the area and knew allll the good places, including the hotel that had, tucked away in a quiet corner, the equivalent of a $100,000 wedding dessert table full of chocolate this and chocolate that and omg that chocolate-filled-chocolate-covered thing over there! I don't know which was worse, my bead budget that day or my dessert tab. We had coffee afterwards to be all civilized and proper (however giddily), but believe me, there were some serious delicacies going down!

Maybe I'm exaggerating about the cost of the set-up but you know those shows, "Four Weddings", where the brides try to outdo each other and some have more money than sense? It was like that without the $100,000 bill! Gorgeous venue, quiet music, and a long bar full of delicacies. We were the only ones there, so it was our own fairyland. And did I mention the chocolate?

Those few days were when we knew we were EXPERIENCING LIFE!  We knew we had to savor every. single. second. because it would be impossible to encounter all of those things for the first time again ... to see those smiling faces for the first time again .. to learn and to laugh and to love for the first time .. to be blessed with joy the way a group of people like us, who were just meant to be together, could be so fortunate.

What does that have to do with my word of the day, kintsukuroi? Well, it has to do with what I'm trying to do with my life now that I've had surgery and am improving and healing yet am afraid I'll never find joy again. I feel broken and lost and quite often sorry for myself. Feeling exactly that way tonight, I got out of bed and wrote this blog post (so please excuse the grammar and typos!).

Again, Allegra. 

Allegra took me under her wing from day one on the Yahoo Groups and taught me more than she will ever know, both about beads and about life. For instance, she taught me there is no such desirable thing as a perfect Persian rug. A Persian rug is meant to be perfectly imperfect, and precisely imperfect. Traditional, hand-made Persian rugs have intentional flaws because the Muslim artists feel that only Allah is perfect and has the right to create perfectly.

That makes me think. Why am I trying to be so darned perfect?

Now, it matters not whether you believe in God or Allah or the Great Spaghetti Monster. The point is perfection shouldn't hound us like dogs nipping at our heels, forcing us on and on to be the epitome of "this is sublimely exceptional perfect", and often losing our way in the process.

Yet so many of us push ourselves that way, don't we?

What we should be asking ourselves is...


Another word Allegra taught me was kintsukuroi, a lovely Japanese word that also embraces the imperfect by making broken bits, cracks, and chips even more beautiful and embracing the flaws. Combine the idea of the Persian rug and kintsukuroi, and you have a pretty good road map for life. 

We all knew those four days were going to end, but while we were together, it felt blissfully like time stopped, and I've only had a precious few moments in my life like that. All of us knew this was special, imperfectly so. We lost one friend to cancer. Another is fighting cancer. One drifted away. Ann and I still shop together whenever I can make it out to Milwaukee, which has been a while, but she's a dear and I love her, and I hope to see her next year at the show.

Allegra, though -- she is indeed one of a kind. Like the ropes binding the pier above, she was the glue, the one with the funniest anecdotes and the most interesting stories, the one we were all drawn to. She knew which bead artist to visit and in what order, she knew when to put our feet up and tell more stories, and she taught us all what a Scotch egg was. She was just -- perfect. But if she were here, she would remind me of those beautiful rules of imperfection ... and I love her all the more for it. 

I pray with all I have that I will get to see Allegra again. It's been sixteen years since that trip, and a whole lot of frayed threads and cracked porcelain have happened during that time. Somehow I wonder how we stand it. But then I think of my little boy painting joyfully over vases that were supposedly already perfect, my dropping dozens of 3 mm gemstones all over the floor over and over again, and Allegra's rug with the flaw you can barely see, but is comforted that it's there. These flaws -- they keep us human. Imperfectly so.

One of my original blog headers sums it up well. Life should be full of beautiful experiences and pretty things. Life doesn't have to be perfect to be valued or important. We don't have to worry about the chocolate dribble on our cheek or being afraid of a Scotch egg (they're delicious, by the way). We're all there for the moment, and life is full of moments, I like to think, rather than a long tedious, stressful path we never deviate from. 

May you find your bowl with cracks and chips and paint it gold.


Wednesday, September 06, 2017

Stay Optimistic

If we think this way, the troubles of today matter a lot less, don't they?

With all the scary weather and the uncertainties of the world, why not cut this out and put it on your fridge, in your wallet, on your computer .... or make someone else's day change by taping it to the mirror in a public restroom, the bulletin board of the library, or leave it with the tip for your waitress.

Love to all, and stay optimistic.