Monday, August 17, 2020


Welcome Daisy

Lettie; origin French for Leticia meaning one who brings joy. Rome; double entendre I would like to be roaming anywhere but the internet...I did however not expect the world would be in my same predicament. Rome; strength and power. The combination came to me one night and I thought wouldn't that be bliss to be living all three? I thought if I couldn't physically live it; I could I share how I have tried to within the confines of this vessel moored. So a journey began and a friend came up with a perfect logo for a new blog, to re invent myself and leave chronic fatigue chronic hope behind. Lots of ideas and plans and then it sat and sat and sat stale as old bread and beginning to show signs of mold. There was no joy, no roaming, instead a paralyzing inability to begin again. So this inspiring idea had become a blinking billboard sign of my failure. A name in name only, what is in a name in this case the name which began with such excitement is just another thing lost. Lettierome gave me no joy and instead brought me a lot of self loathing. It became this albatross around my ankles as heavy as gravity often felt with this illness. I became suffocated with my inability to move forward, overwhelmed by my lack of technological merits and felt like a failure.

So last night, as I reflect this morning what changed was a confluence of events some conscious others not and the ability to let go of lettierome. Not the meaning, but starting from scratch. Rather, I decided to take the road already traveled and begin again here.

It has been a brutal summer and last night that famous light switch was taken off of dimmer and I finally  have a bit of clarity in my brain. I did not struggle nearly most moments of yesterday to just feel alive. Something finally gave and per usual I have no idea how long it will last so instead of trying to figure out a new starting place I came back to my original home and I changed the name; to my own name and will begin again. Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome is not magically going away; but I am still here. And there have been more times than not recently I was not sure that would be the case. 

August 16, 2020

Also the signs. Subconsciously this morning that I did not remember until I tried to airdrop a photo for this post. I had an entire rant about the poison "Apple"and my tech challenges. I don't have my photos on this computer, I am only using this computer because my beloved laptop where the keys clicked perfectly became obsolete...something I felt we had in common.  I left Facebook for IG a few months ago and saw this post by Cheryl Strayed, the author of Wild yesterday morning. The post below ( I did do due diligence and message hoping okay to share) was about writing which was not unique, what was however the photo she chose to accompany it and the message she shared.


Somewhere in the crevasse of my brain that stuck; Daisies, writing, endure. I have listened and observed the reckoning COVID-19 has taken over my circle of friends and the world. I thought to myself many times as people talk about the harms of isolation; I finally did what is incredibly difficult for me to do I realized I have endured and endured mainly alone. There is this reckoning of the damages of isolation, fear of the unknown and everyone is banding together to help everyone get through this gut wrenching time in our history. I realized I have a unique perspective that its time I start sharing as a badge of honor rather than a cloak of shame. If nothing else I have endured over a decade of a parallel experience and maybe it's time I take some of that knowledge and begin to share or at least grab the computer I curse and get something out just for today. So thank you Cheryl, times two, because the night of August 14th as my body and been in pain for over 72 hours as I stared in the mirror I looked to the left and saw my badge of honor Cheryl Juech had made for me "You are very brave." I willed myself to let those words wash over me and into me; if she believes it I will too.

I am writing this hoping as you read you will remember that this time will pass. It is not easy and everyone individually has unique challenges that we can only listen to and try to understand. I am also writing from a point of acceptance, This is ME. I live with a chronic misunderstood under funded illness that I will never stop searching however I will stop trying to separate myself from it; I have lived in the past hoping fo a different future. I can not do that any longer. With COVID-19 has come a new group of "COVID long haulers" aka they have joined our club they just may not want to admit it yet. But all this is for another day.

Today, is for a little joy, and that is our new family member Daisy Mae. You can follower us on Instagram at DaisyMae.33. I wanted to change her name to Lettie because she is the personification of one who brings joy. And like the blog realized there is only so much in a name, she doesn't need it she is it. I hope this new phase of my blog will encourage you to ask questions, especially trying to deal with a confined life. I will try to begin being more social media savvy to add some joy and do all in my power to spread that if we want joy back we need Joe back. Politics is in my blood and my heart, I can not leave it to the side. So I understand if for some this is not their thing, don't worry it won't be everything. 

I mused about funerals a lot lately, thinking of all those that are dealing with unprecedented grief. COVID is heart wrenchingly cruel robbing those the last precious moments to hold someone the most powerful transfer of love if you have had the fortitude to endure that act. Holding someone you love telling them it will be okay. The power of touch. And then those that lost someone from a different illness and are forced to choose between the safety of others and a celebration of their loved ones lives. This lead me to two of our greatest Americans. John McCain and John Lewis. The two could not have come from more different backgrounds, different political parties yet their lives interwoven in duty to America. Take a moment to reflect on these two great men pillars of what we can all strive to be flawed and human and decent and unstoppable had one final moment in common; every living President attended their funeral ( accept Jimmy Carter who was there with a delivered message) yet the sitting President was not welcome at either. Please think about the history of that, and ask yourself what else do you need to know.

If you got to the end of this blog, like the Monster at the End of the book haha amen hallelujah you endured my muddled steps back. Thank you. Sincerely thank you. I hope you can find a little joy today, and if not if your legs will take you my goodness please roam! 

My heart was a little scared of this one; grief is a funny trickster as I've said.
I've missed Sophie often more since Daisy arrived, I guess that's what happens when you are reminded of Love 

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