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.









20 comments:

  1. love you Lori!! I'm so glad you're going someplace special to celebrate this very special birthday. you deserve it and more!

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    1. Me,too! So very excited! Getting to check something off my bucket list!

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  2. Awesome.. one of your best. Missed seeing your posts, but this was definitely worth the wait. Excellent post, Lori

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    1. Thanks. Re-reading it, I see places that need tightening up, but it felt good to write.

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  3. Anonymous4:51 AM

    Greetings! Very helpful advice in this particular article!

    It is the little changes that will make the most significant changes.
    Thanks a lot for sharing!

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  4. Anonymous6:18 AM

    I have always admired your writing and this post is an example of why. Thank you for sharing.

    Jen B.

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    1. Thank you! Wonder what Mr Brill would have said?

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  5. I’ve read your posts for years, kind of a lurker, but have always admired what you have accomplished. I’m sorry life is tough again and hope you get better soon.

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  6. Lori....love your honest sharing... It hurts my heart ❤ that you have to endure such pain.. And here I sit. My pain is mental, while I have days in bed, the pain is not physical...I wish we could trade....

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    1. Mental pain can hurt worse than physical. I know mine is. Love to you!

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  7. So glad you are writing again. This essay is a gem. So much truth and wisdom in those words, "They're doing them. I'm doing me." Powerful.

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  8. Hello Lori Dear. I am not certain my comment posted. I LOVE YOU and thank you for writing this post. None of us are perfect in this world of constant attack to be “perfect”. I know I strive every day just to be a kind human being. My prayers continue for your health and well being dear. XO

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    1. It is a world of perfect. For one, I blame selfies and Instagram and all those filters that give people a bad case of the sads. For me, anyway.

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  9. Sorry you're feeling so horrible. It's hard to exist when you're in pain. I was in constant pain from my knee to the point I wanted to knaw my leg off. I finally had my knee replaced and am pain free and have a new lease on life. I wish the same for you. You might want to check this out. And no, I don't wear an aluminum foil hat, I'm just into natural cures. https://www.earthclinic.com/remedies/borax.html Also check out Marc Martel. If you love Freddie, you'll love Marc. A lot of "Freddie's" voice you heard in the movie was Marcs. https://duckduckgo.com/?q=marc+martel+bohemian+rhapsody&atb=v129-3__&ia=videos&iax=videos&iai=-4b5A6MFSpA

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  10. I hear you on so much of what you wrote in this post. In the last two years, I've experienced several health-related issues, and it's exhausting. It's emotional and scary, and I worry about who I tell for fear of what they'll think or if they'll judge me or, even worse, that they will think I'm seeking pity and attention. You've been working through this for such a long time, and I admire your strength and words of wisdom. I'm grateful that you receive support and care from wonderful people who want to lift you up and help. I'm also grateful that you are willing to be vulnerable by sharing all of this via your blog. You're brave to open yourself up to share your truth, and it can and will help people, Lori. Thank you for this post and all of the others. I wish you the absolute best and may you have an awesome vacation in January.

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    1. I don't feel brave, but I have my moments! Just not at 3am, which has to be the loneliest hour.

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  11. I am so glad that you posted. You have a real gift for saying things the right way and this post is heart touching. I think of you often but I don't write much. I always wonder if you are not feeling up to having someone else to deal with. You are so right about not everything has to be cheerful. People that send negative responses to you only show how little compassion they have for fellow human beings.

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    1. I love having other people do deal with...it takes my focus off ME and I feel useful if I can be there for someone else

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