Wednesday, July 14, 2021

The Place Between


There’s a space between I can’t and I won’t. I’ve been in this space before; under different circumstances. The time I would not jump off the high dive at the public pool. I couldn’t; but I knew I probably could if I had really wanted to. But that was the thing; I didn’t want to. Therefore I took the the humiliation of antsy children staring at me, no applause as the lifeguard defeated escorted me down the ladder. Inside I had won. There was so much pressure to jump and I changed my mind and would have stood on that tiny board with my toes over the edge until the sun went down. 

So here we are today; forgetting when you feel awful most days how much worse it can get. I’m alone with myself and thoughts as my head hurts too much for even music. My body still my lungs heavy. In comes the thought like a cloud without wind I don’t want to do this anymore. Not I can’t. Of course I can. The space between I can’t and I won’t is a choice. This no longer feels like a fight I can win. So I let the disease takes its win; I won’t do a thing. I will be still and hope for a sign that in a minute or an hour or a day I can again. But for now I am done. 

Thy will be done. I’ve heard it a hundred times at funerals and weddings. The majority of when I’ve been in a church. But never really thought about it until reading Amanda Kloots Loving and Losing Nick Cordero. Thy will be done. Not being religious thy will has been my will. For today it feels a bit less complicated to hand it over to someone else.

As I lie still contemplating everything and nothing and the space between I can’t and I won’t it begins to pour rain. I turn my head to watch the gusts blow the drops heavily soaking the earth. What if this was the last time I saw rain? That thought was heartbreakingly unexpected. I can’t. But I will.

Tuesday, June 29, 2021


Daisy; like an invisible illness don’t let her fool you
Just taking a toddler nap

One of the immeasurable losses of having Myalgic Encephalomyelitis is imaging all the people I would have met without this illness. I miss knowing the person at the local coffee shop, I miss the bartenders that always seem to grab me extra food from the places I frequented. I miss the grocery clerks the hairdressers the friend of a friend you may have run into at those places. I miss being missed. 

The age I have been down and out has spanned a time where most of my friends communities have expanded. They expand through a marriage, a career, neighbors and children. Yet my world has closed in on me. I am receiving high school graduation notices from my previous life inner circle and these children I barely know. Some I have never met except before they can remember. I am a mirage. I feel often as I exist merely in an abstract way the way unfortunately often the elderly are looked upon; as this life of solitude defines their existence. What is most upsetting is I would have known these children now nearing adulthood because I would have traveled. I would have shown up. I would have loved to be present. It’s not that I didn’t try; I could only try so much. 

This leads me to the situation at hand; Instagram. I left Facebook a few months ago for good. I finally walked away from the empty promise of we will be better next time. I received some hateful messenger because I dared to use a Tom Hanks quote and don’t follow QANON to know he’s a known child abuser. Also, I found it just too painful. I got the jist people want to like happy things but anything that seems to matter to me went silent. So I was a bit shocked to find I enjoyed Instagram. One of my helpers ( lol one that quit because well; I was too difficult ) had asked if she could set up an account for Daisy. She was caring for her a lot and spending the nights when Daisy was a puppy. And as a 21 year old she wanted to share this little darling puppy. So I said sure; in my head thinking it was absurd and probably an eye roll...I wonder why she quit...

Then I realized it was kind of like the new version of People magazine. I don’t follow a ton of people by Instagram standards is my guess and most I don’t know. But oddly some I came to know and in a much more meaningful way than I had ever expected.

I also ended up finding one fierce and bold ME/CFS or MAST cell or fill in the blank chronic illness community. Unlike FB where people discussed treatments or advice these were chronic illness influencers and they weren’t messing around. I learned words like ableism and dynamic disability and don’t you ever tell me to do yoga or suggest treatments because it’s harmful - we live this support don’t doubt. One of my recent favorite quotes was “if you can change your diet consider it a privilege” I was blown away - ugh these were my people. They weren’t having any of this being treated less than.  Be better; learn. And here I was learning from this younger oddly often European “Kids” that I myself was an ableist. I was discriminating against myself and I had taken way more emotional harm than I deserved. I didn’t know any better. I was learning an entirely new way to be within this diagnosis. At times I cry because I don’t want to viscerally understand their stories, their messages. It still is a double edge sword but it has done way more good than harm. And I am so thankful for their community. And begrudgingly had to admit I know them all I needed was the mirror.


Simultaneously it has been a crazy time; a confluence of events were happening the world was living our world. Shut down. Told no. Physical discomfort ( if we really can call a mask a hardship). Those everyday interactions gone. The isolation concerns about it and all of a sudden the world found a way to open up in a way it hadn’t ever before. So your world got smaller and I finally could “attend” more events more concerts more gradations than I have in the last decade.

So this brings me to Tally Sessions. Some of you may have gotten an email, text or message from me asking if you would donate to his GoFund Me page to help save his mother’s home. I “met” Tally because I happen to follow Selma Blair on Instagram; one because she exudes that born cool and also to follow her coping and living with Multiple Sclerosis. I believe it was there I saw her like or share a post from Amanda Kloots. Amanda’s husband Nick Cordero an actor and musician was fighting for his life due to COVID19. You can read her story hereLive Your Life; Loving and Losing Nick Cordero. Amanda met Nick on Bullets over Broadway and started this rallying song at 3pm singing Nick’s song Live Your Life. I will say I often watched but I am no fan of the selfie let alone self singing but hundreds would join in; the most ardent cheerleader fellow Broadway actor Tally Sessions and David Josefberg. The two of them would sing and dance often over zoom their hearts out hoping their dear friend Nick would wake up. I began following them both. Tally more often as he was always so full of joy and life. Life; something this past year has seemed elusive. My health declining combined with the stresses of covid for everyone his page always seemed to make me smile.

And all of a sudden I felt like I had a little community again; many of these individuals I have never met most never will. I had stumbled on to a very obvious way to expand my network. To have interactions with a world bigger than my own. As I followed Tally his journey took a turn I hadn’t known prior; his mother was battling stage 4 cancer. He took her to her appointments and didn’t over share just used social media in the best way possible to spread some love make some laughs and make a clearly difficult situation have a bit of levity. I adore Tally Sessions. I began looking at some of his Broadway clips and his voice blew me away. I wondered was there anyway I could adopt an adult son that someday would care for me the way he cared for his mother the way he rallied for his friend? Clearly a Broadway Actor would be hit extremely hard economically during COVID. Which leads me to about a week ago when his mother’s chemotherapy needed to end and hospice to begin he did what was clearly painful for him; he asked for help.

It is really hard to ask for help. But in typical Tally fashion he did it with such Grace and Humility and at the core to give his mother some peace; to save their family home. And you know what he is almost there...a $150,000 loan that will be due upon her passing is under $5,000 away from the goal. 

I hope after I finish this and check again like waiting for an exam grade to be posted outside your college room door that the goal will be reached. 

Tally’s mother passed this morning. She was peaceful surrounded by her beloved sons. She will rise up if there is another land with Tally’s father who he lost when he was just 20 years old. I cried. 

Perhaps pre pandemic this would all sound strange to you all. But I’m guessing you have a bit of a better understanding to what it feels like to have your world shrunk in size. I have pushed away the idea of an online community for a very long time because it felt like I had thrown in the towel. I had no interest in getting to know others with my illness I don’t want to be in their club; but I have found a lot of badass well dressed don’t mess with me allies. 

While most days I grieve my old life with pain I can’t put into words.  As time goes on I get less comfortable and more exhausted by the longevity of these circumstances. However today I am grateful. Today I will find the silver lining that without this online medium I wouldn’t come to know this amazing human with a big voice and deep heart; who is grieving something else completely. A grief that I am so blessed to not yet encountered; being on this earth without my parents. Today I am grateful for the friends I wouldn’t have met most likely without this illness and they are weren’t my idea of what friendship and community looked like I’ve dipped my toe and the water is refreshing.

Rest in Peace Bert. You raised one amazing son. 

This just happened
Love wins 

Tally Sessions Go Fund Me

Note: if you subscribe to my blog; blog spot is no longer sending notifications.. and a bunch of tech jargon I don’t have brain power to understand so please email me at if you would like me to notify you) I also note when I have written on my Instagram page - 
Instagram handle : daisymae.33 
Like I said a 21 year old set it up 🌼

(I would like to thank everyone for reading; it’s been a long time since I’ve written and doing it from my phone so thank you for slogging along with my rest assured typos and grammar and brain fog that leaves me frustrated how easily words use to come)

Begin and End with Daisy 🌼

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 - 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.

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


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 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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