Wednesday, March 17, 2021

One year

March 16 2020 
Calm before the storm 

March 17 2020

I remember March 17, 2020 like it was yesterday and a lifetime ago. I remember my mom arriving from Milwaukee as the world was starting to turn upside down and one of my main help quit with no notice. I remember coming down the stairs as she walked in wearing little black boots, dark blue jeans a black cashmere sweater with a little rhinestone green shamrock pin. I remember giving her a hug and feeling relief and guilt but most of all I remember the vicious sore throat.

She had just flown with less than twenty four hour notice across the country for an indeterminate amount of time and all I could do is give her a weak hug thank her and said I have to go back upstairs my throat is killing me and I don’t feel well. 

Today, one year later, my mom came in my room this morning with Daisy in tow and flowers that had arrived on the front porch. This time she was wearing blue jeans a white top and a white sweater with a shamrock scarf. It took me a few hours before I had the energy to tease that she was channeling Dr. Birx. My list for today not feasible after waking at 5am sick was a long list of blood work from a ME mainstream specialist. It’s been a year, lots has happened around me however I now have a demarcation line I had never had before in the course of the last jumbled fifteen years. A new before and after. 

March 17 2021

While others get frustrated about what will open when and when can life get back to normal and a sense of stability. I wonder above all things will I get back to the progress I had made before March 17, 2020. And it breaks my heart. 

I could taste freedom. I thought I may be able to reclaim some independence. It has been a cruel tease and I have to decide when to succumb and when to fight; and what does that fight even look like? 

There are many things that like most are apart of our DNA we didn’t try to be a certain way it’s just our walk, our laugh our smile we are born with these characteristics. Then there are the choices that we make that fill us in like a coloring book we get to decide if we stay in or out of the lines. What colors do we choose? I feel like someone stole all of my crayons the bright and vibrant colors. The silver and the gold. Didn’t even give me the primaries because then you could create more. I feel like all my crayons were stolen and I’ve been left with an old stubby pencil and lost trying to make a rainbow life. 

I really believed those crayons were one by one slowly being replaced. The winter and spring of 2020 I wasn’t daring to dream for the 120 count green and gold super box of Crayola’s. But the 24 count was becoming a reality and I thought I could make a pretty interesting life if you just bless me with twenty four. 

Note: This is my experience this last year when I went from finally making significant improvements in my health and what all signs point to developing COVID-19 or some acute illness and now continued non recovery. I want to acknowledge how the pandemic has touched every single person in different challenging and heartbreaking ways. Thank you to those tirelessly working to keep us functioning, safe and finding the light in the dark. Wishing all much peace and extra love during this time. Always. Heather 



❤️







Sunday, March 7, 2021

All One Time Live

Podcast All One Time Live by Ken Jenkins

Link to Trailer

I wanted to take the time to thank my friend Ken Jenkins for asking me to be a part of his podcast All One Time Live for a two part conversation of the journey of my disease Myalgic Encephalomyelitis formerly labeled Chronic Fatigue Syndrome and my use of energetic healings and experiences with messages from those that have passed. 

The latter something I keep quite private as I don’t feel these experiences are mine but a gift that came to me for reasons I will never know and don’t pretend to understand. Therefore it is with much gratitude I thank those that gave their permission to share essentially what is their stories. Ken does such a thoughtful presentation and has a curiosity for life that is infectious. I felt strongly his platform was a safe honoring place to share this experience. I hope it makes others feel less alone as they travel the road of grieving. 

While speaking with Ken it was easy to forget this was not a conversation between just the two of us but one that would be shared; and I hope I did it justice. I appreciated the opportunity to expand the knowledge of ME especially as it is on a collision course with Post Covid Sequelae.

If you enjoy podcasts I encourage you to start at the beginning to hear Ken’s story and hope you find his episodes as calming and interesting as I do. As Ken would say... In Joy, Enjoy.

Ken asked me for a bio to include with the podcast ... little trip down memory lane. Where does the time go? Thank you all for your support. 

Heather Dreske has a meaningful story to share to give light, insight and comfort to her readers and listeners in this warm and wonderful conversation.

A bit about Heather: Major in Psych and a Minor in Africology, in 1994 volunteered in office for Public Allies in Milwaukee (which Americorps was based on), worked as an Ally as Economic Development Coordinator in a Milwaukee neighborhood organization and was rewarded with a Proclamation for a day in her name by the Mayor of Milwaukee for her work there. Through this work Heather became acutely aware of the poor health of adults and children due to economic insecurity and stumbled upon Naturopathic Medicine with a plan to come back to that area to create a holistic clinic (though that path would eventually lead elsewhere).

Heather attended Blue Sky massage school and opened an independent office, went back to school for pre med prerequisites and lived in Nice, France during winter break through the Hofstra Univ of NY exchange program.

Heather attended Southwest Naturopathic Medical School in AZ, passed the boards and maintains her license.

Around 2003 she started noticing she wasn’t completely well and within a few years discovered through her own research that her symptoms aligned with what was then called Chronic Fatigue Syndrome or CFS, now more appropriately understood in her case as Myalgic Encephalomyelitis or ME (which is in the news a lot at the time of this episode publication relating to Covid-19 long haulers).

This lead to Heather committing to as much advocacy work as her health allowed to promote better understanding of CFS (broad spectrum) and ME (more specific) including facilitating the first showing of the documentary The Forgotten Plague by Ryan Prior , being filmed for the Sundance award winning documentary Unrest (though she does not appear in the final cut) and promoting ME organizations, advocates and writers.

She has and continues to blog BEAUTIFULLY about her direct experience with the challenges she faces with ME at HeatherDreske.com - her writing is sincere, accessible, informative and moving. Her main priorities are now her dog Daisy (after a heartbreaking loss of her fierce friend and canine companion and attentive healer of 15 years, Sophie), friendships and family and showing up the best she can, missing most the ability to travel, spontaneity, eating out and the feel of having a healthy body.

Please enjoy this conversation with gratitude and consciousness in all of the joy that it has to offer.

www.HeatherDreske.com

https://www.meaction.net/



I’m yours you’re mine


When I decided to get another dog it didn't come easily. Most decisions with an illness that leaves you unpredictable and searching for energy don't come easily. When deciding what rang most through my mind is how many people would comment that Sophie only wanted to be with me; Sophie didn't really like anyone but me; Sophie was indifferent to anyone but me. I heard that as a bad thing. I internalized that subconsciously as if I ever get another dog I want to make sure she loves everyone. Daisy loves everyone. What I hadn't factored in was where did that leave me? In an illness that many can begin to understand the effects of isolation has one one’s self worth. I knew how vital Sophie was to my well being; I didn’t realize how difficult it would be to replace this void.

Living in a body that refuses to cooperate; where you are dependent on others all the time to do for you is a humbling experience. This illness in particular does not reward pushing past ones limits. What I hadn't realized until recently is that Sophie was the only "being" I never felt that I didn’t constantly let down. She needed only one thing, me. I needed only one thing, her. Even as through the years as I would need to have others take her to the vet or grooming appointments I had made a promise that it would be me that was with her when it was time to let her go. I fulfilled that promise where I have had to break so many others. It is an act in my former pre illness life wouldn’t have been a concern; showing up was something ingrained in my personal moral code. Showing up now looks very different as many can now acutely understand being forced to show up at a distance.

So now that her absence has grown longer and my illness post covid has taken a challenging turn the void is palpable. She was the last thing that was just mine. I had one little being that depended on me and I her and now that is gone, what is left that is just mine? There is a pride and purpose of a having something that is just yours. I have always been inclusive and what is mine is yours way of living. But then you may have your career or a hobby or a garden to tend. I share nearly everything, even if I don't want to because I can't function alone. And now the vacancy of that connection that was mine alone is gone. And without it a daily sense of purpose and accomplishment missing. I knew everyday that one little being needed nothing from me except my presence. I struggle to feel that anymore. 





Daisy is everything I had put out into the universe. She is joyful and happy and loves everyone and everything. However, she needs more than I can give. She has become one more mirror of my inabilities. I didn't see that coming. But how could we see some things coming? A few people thought it wasn't a good idea I get another dog; that it could take too much energy from me. But that needed to be factored in what an animal gives. When I had Sophie I often felt lonely, but never alone. Daisy has bounded in and her joy ripples like a stone thrown into a pond. But it is in the ripple I feel a longing of the distance waves. I berate myself wondering why I didn’t get the same breed ? But my health had also been improving and wondered would it be odd to look at another little white fluff ball that wasn’t her.

Daisy currently doesn't even live with me full time. She lives with my parents now during COVID and my mom brings her in the morning after their walk, mostly my mom takes her to play in the backyard with my sister's dog or throw the ball 100 times. She takes her for her afternoon walk. And I have once again become a witness to rather than a participating in the life of something. I feel like the outsider as I do so often, the observer. Why didn't I say thank god Sophie only wants to be with me, only likes me, she was the only thing I hold on to from life before this illness and after that didn't change. It wasn't because I got this disease that she became that way, she was always that way and just became more fierce in her loyalty as so many others dispersed. I'm realizing she was the only relationship or aspect of my life that was unaffected and perhaps enhanced by my illness. Why didn't I want that for myself again? But perhaps like human relationships some are just never going to be duplicated; wouldn’t that in fact diminish the inexplicable bond. Similar to friends or partners we meet and feel like we’ve known a life time in an instant. And yet there are enduring relationships that start as mere casual acquaintances and grow deep roots out of the initial surface connection. 

But then dinner comes which I mainly eat in my bedroom. Daisy by this time like a toddler that has had her fill and crashes on my bed as I eat. It's been my inner mantra in the last few months to get to dinner. When I wake up feeling worse than when I went to bed; I tell myself just get to dinner. After dinner I have some independence. I normally feel a bit better and can take solace in a few hours that I can pretend I truly live by myself, not the reality that I live in my own home where nearly 12 hours of the day someone is here or coming or going from here to help me with meals. 


This is when the little brown eyed girl though decides to remind me perhaps I have this all wrong and I am hers and she is mine no matter the circumstances. Daisy has gotten into the habit as soon as she hears my mom come towards my room currently with winter boots on from wherever she is on my bed she huddles right beside me. She often will lay down and completely ignore my mom's presence. The first few times she did this we laughed and my mom went to pick her up and she gave a little Sophie snap. Daisy is the most gentle dog I have encountered and yet this little “get away” from me is straight from the Sophie handbook. So then I will try and pick her up and once again like a toddler's silent tantrum she will go limp.  I now take my plate into the kitchens she will follow me and give her a little treat. Then I pick her up and thank her for being so amenable. Sometimes I think hmm, you are a lot like the person I use to know and crave to be that person again: adaptable, amiable, never in one place. So it is Daisy not me currently flitting from person to person house to house happy to be free. But she has given me a little non verbal sign; don’t worry I still am still yours. It may look different and feel different but I’m yours and you’re mine. 



Friday, January 1, 2021

GREENLIGHTS


Maybe it was the new sweatshirt. I’m not much of a sweatshirt girl; baseball hats either. I’m firmly convinced there are the women that can pull off the alma mater sweatshirt and baseball hat looking chic and reminiscent of younger days; I never was one of those girls. I certainly don’t own a hoodie. When I went to order myself a copy of Matthew McConaughey’s Greenlights book and it was back ordered I figured I’m guessing I get the gist; but decided a white hoodie was in my future and a baseball hat.  So today with my jeans and unusually not completely unflattering crisp white hoodie with the motto of Mr. Alright, Alright, Alright I had the energy to do what I have been wanting to for the last 6 months; organize my closet. Found a few little gems; this one of them and a lot of old belts that may have fit in 1995.



I know many people this was among their first COVID tasks; apparently there is some show about the joy of decluttering - bet a number of people were cursing her advice as they looked at their de cluttered house when a pandemic hit. This has been a theme I’ve discussed when you are mainly homebound your space is your world and your world is more enjoyable if visually appealing. However, the art of organization is not one of my strong suits. Too much organization or perfect cabinets definitely make me a bit edgy. However, in Phoenix I am spoiled by the OCD nature of Christine. Prior to that in WI neighbors would stop and complement my x on how clean our garage was....I once took a photograph of our bathroom drawers when the two of us were in a rental in Phoenix for my treatments. Damn it; wish I had that picture. Well I do it’s just on some thumb drive that is possibly been in my wallet zipper pocket for a decade, or a computer I don’t know how to get it off of, or that other thumb drive that just appeared out of nowhere. It was a good picture. I just found it funny; like what would it feel like to be thar organized? He had lined the already pristine clean drawer with a perfectly folded white towel. Everything was in a straight line in a logical order of use. And then a leather dob kit fit perfectly next to the rows of toothpaste, toothbrush, razor etc. Sometimes it’s best not to share toothpaste. Solves a lot of problems. My drawer on the other hand; a variety of misaligned items searching for some order. But drawers close right ?

Anyways, I’m not messy but highly organized I am not. Heck, I’ve had the same address book for 20 years so scribbled and most people filed under an order that only makes sense to me. But I’ve been getting a bit overwhelmed with the lack of color aligned closets and everything having a particular place the longer I’ve been in WI.

I also realized this is the longest I’ve lived in one space since I lived in the home I grew up in. Twelve years; it kind of gives me a mini panic attack thinking that. Then I calculate that the last 8 have been only half of the year...so technically this peripatetic loving individual has had 6 years of one home. By the way that’s my new favorite word thank you Michael J. Fox and I’m not ashamed that I needed to look it up. The dictionary always one of my best friends pre google. 

So today, after 5 days of mainly bedridden I didn’t think I just acted. That is when you know it will be a decent day. The lack of thought behind each and every move. I’ve been reading Michael J Fox’s memoir and he discussed how deliberate every action is with Parkinson’s and I could relate. On bad days there are these long delays between thought and action. On very good days there is no thought; only action. Today in 9 months was one of the few non thought days I have had. 

It is impossible to explain what this freedom feels like even if I still hadn’t left my room. Well now it is 6:40pm and for the past half hour I was motionless deciding if the effort was worth the reward of telling this mini story the New Year accomplishment. Prior to that my parents made dinner and I thought I was okay until I tried to eat. Eating always a tell. The first swallow I felt nauseas. This wasn’t going to work. So after my parents ate my mom had to make a second meal; simple French toast and an over medium egg for me to give a second try. It was easier; and then everything started to ache. Not pain, so grateful I’m not in pain but just hurt like I had done much more than I had. Then the stillness. Then the reality; I haven’t been lazy or not wanting to clean out my closets today is the first day I could. Never - it never feels real. 


I know what I need to do now. I’ve been here before; well actually not in awhile because at least today there was a cause and effect. Stillness. Over the years I have been forced to get use to stillness. I would be proud of my yogi like abilities but it hasn’t been a choice; it’s survival. If I’m lucky tomorrow I will be cleaning out bathroom drawers. Today was a good day. Green light baby; catching it when I can. 

Happy New Year. 

“Just keep Livin” Matthew McConaughey 




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