Wednesday, March 30, 2022

Thank You Martin, Paused_ME

( Martin of @paused_me (Instagram tag) asked for photos of those suffering from ME for a video he is creating for his foundation. I don’t know all of Martin’s story; I know from our friendship and following him on Instagram he is a lawyer, a talented musician, he has a gorgeous kind girlfriend supporting him every step of the way ( a beautiful partnership), he was mild/moderate until he pushed himself ( as any young 20 something would do ) partying hard-living loud on a vacation with his friends drinking, laughing, smoking pot, jumping from cliffs into crystal clear Mediterranean water. Never could he imagine that trip would be the defining moment. How could he...I know he’s tried HELP apheresis having access living in Germany. I know he is tube-fed. I know he is tenacious, wicked smart, and relentless for a cure. So when he asks - I answer. This is what I shared with him and said if used or not the process was cathartic. Thank you for coming along.) The text below is taken from my Instagram Post in response. 

Always by my side. Bed selfie.
My sweet girl Sophie 
Miss her every single day

 @paused_me Does so much advocacy from the confines of his bed. He asked for people with ME ( pwME) to share some photos of themselves how this disease impacts them. Perhaps being of a different generation I said I don’t have a lot - I won’t let anyone take my picture at my worst. But when I look thru my camera roll on this phone which is from 2014 I can see how many are taken from bed. 

Dark thick blood; sometime maybe 2018
Given long covid is looking at micro-clotting may give some answers
why this treatment has always been effective for me

Home IV Saline biggest blessing and boost
Incredibly difficult veins that look good and deceive
Grateful for my friend who would do them for me 
Slow drip

But what I notice most is the missing. The endless photos I’ve saved from things I haven’t been at; the fact that my nieces and nephew only know this one version of me. I need to think long and hard how it can be still a vital one. Today is hard. Yesterday I made it with my mom to two stores close to home when she was trying to pack for FL and realized she had nothing for hot and humid weather to walk thru Disney Land. It is the first normal mother/daughter shopping we have done in I have no idea years and years. It was important to me because after all her caregiving I wanted her to feel comfortable and nice for my parents vacation with my sisters family. 

Cornucopia for our Forgotten Plague Premiere
Never did I think I would have gotten worse 

Post UV Blood Treatment
Often worse before better - Healing Crisis
Weak - Tired - Grateful

My body is wrecked today but not beyond repair. Tonight Christine arrives from AZ leaving her family for 10 days to help me. Those who know me I’ve never been a Disney or theme park traveler; but I would have gone and popped in lol at the spa ! Another missing. Another my parents stressed that all goes okay. Another in your face reminder I can not care for myself. 

10 Days post the sore throat and "flu" that changed everything
March 2020

Today watching the world go by

So @paused_me ask was a therapeutic look back; sometimes it’s important to acknowledge what has been lost. It is painful. To pretend otherwise is not living the truth. Each day we all pwME do our very best to live our best or some days just get to tomorrow. #mecfs  #postcovid #invisibleillness #stoprestpace #chronicillness #millionsmissing #dotoday #dyingtolive

Christine in 2014 when she would visit for 2 weeks that summer to help
Life before her husband and children. Eight years later still coming to my aide.
Fierce protector - Looks that could kill - Knows what I need before I know
Observant - Supportive - Wicked funny - 
Family we choose

Wednesday, March 16, 2022

Storm is Coming

Original Painting
Simon Lutrin 

It is another worldly vibration that is always humming in the background. Lurking beneath my skin deep into the cells of disarray. The storm is coming; the storm is here, the storm never leaves it continually teases its power and forbearing. You are forced to prepare for the wrath while trying to enjoy the calm. Is there ever a calm? There is an illusion of safety that we create to manage to take on another day. It is no wonder one would end their day in the ray of sunshine; the finale to be luminous rather than dark and alone. We do not live by the same rules. We are here but so very far away. Smiling but no longer from the eyes caught up in unfettered joy. A prisoner with a warden always looming. Toe the line; the imaginary constantly moving line between living and surviving. 

When did we leave this world for our own little kingdom? When was the moment we breached the boundaries and there was no coming back? We live in your world but we are no longer of it; yet so few notice our fading. We don't let them see us fade; because then we would truly disappear. Until then we put pretense of this is enough. It has to be enough because we are told it is and too tired to fight the narrative.

We are no longer alone but we are lonely. We have a community where we never meet in person. Avatars of varying degrees of abilities and we celebrate when one breaks through to the other side; no matter that we know they will return. A temporary reprieve. I'm so tired of them returning. A few break truly free; the young who have headed the warnings to rest until they can't rest anymore add a dash of luck they are truly free. No matter they will always be on probation; they know what was almost lost and play by the rules to keep their freedom. For how long?  That question is never far from their mind. But for those few, very few the storm blew thru and they have a chance to rebuild. The wise ones with a firmer foundation, a newfound awareness the next time the winds will move slightly north and they will feel just a breeze. The breeze their reminder this freedom can be taken away; the next wind may be the hurricane. 

Original photograph 
Cheryl Juech 
( poor photo of the photo )

I have lost all illusions I will ever live without the storm rustling inside of me; perhaps one day our eyes will meet in peace. Until then we battle and we break. It barrels I take refuge. It passes I feel the calm behind the destruction. We look out the window tasting the breeze hoping it has whispered freedom to a fellow traveler and offered the comfort of relief.


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