Prologue
The last post that I wrote and didn't keep reverting to draft was Borrow My Belief. That has been over a year and a half. While I have been editing this one and seeing ones I move back and forth into the draft purgatory I noticed the date of that last post... March 15, 2019. I had such hope a year ago March that I would find some freedom in body and mind. I hadn't realized until now how much I had believed those words until March 17th stripped them bare. Prior to mid March 2020 I leaned on faith when Daisy entered my life those pleading sad eyes I didn't have a chance - faith said say yes. It was also in January when for three months I had been making sustained progress that I finally let myself hope. Hope this time next year I wouldn't need as much help. I would be able to handle being in AZ with just the help of Christine. Perhaps even in WI, I wouldn't need help at all except some drop ins. This is what I dream of; independence.
It is only now, tonight as I am nearing the end of my go to calming series Felicity that I am processing how a year ago I thought I might actually be free of this illness. If not free; certainly not as bound. Then came March 17th 2020 and as my befuddled brain and finicky blogger platform and computer converge; I am going to need to borrow some more or take the time to even have belief. Words it seems like so many aspects of my life right now feel a step behind.
After Sophie passed as I had said I thought I would end this blog. I did in name only. That time frame I lost my words as my world had altered; in time I adapted and life started to find its new equilibrium. Then came March 17th, and unlike humpty dumpty I didn’t fall of the proverbial wall something shoved me off the ledge and I came crashing down. When I landed all was left were broken pieces of myself - trying to not only put them back together again; but even find them proved difficult. I use to write in my head and my fingers were merely the vessel. It doesn't come easily anymore. Writing has become as hard as most days; its organic nature lost and like most days everything feels forced. Therefore forced and stuttered it is - this is.
I am searching hard to believe. Believe I can get back to before March 17th 2020 let alone before this illness ever struck. While at the same time there is a collective dismantling of the world; it too has fallen off kilter and is cracked and broken and much like my body not sure how it will be put back together again. 2020 is coming to a close and things aren’t magically going to change when midnight strikes; at least not the world but maybe a little bit of me and you ....even if I don’t believe I will try. But what does Yoda say...There is no try ... that’s about as much as I remember from this very non Star Wars follower. No try ... only do ? can ? ....well here is the best I’ve been able to write...
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| March 25, 2020 |
I've been trying like everyone else to do my very best during this pandemic. I'm learning that everyone's best doesn't all look the same. Some by design, others by omission, some by selfishness others by oblivion. While most mourned not being able to be with family over the Holidays; I mourned being dependent. This dependence meant my exodus to Phoenix was not as easy as it would be for others. I depend upon others; to help with my meals, walking my dog, helping with laundry, so that I can have a few decent hours some of the days. I can not complete a day by myself; it’s a paralyzing statement albeit true...for now. While others were mourning yet another thing missed, I was mourning being present. Phoenix isn’t even my dream city to escape to; that doesn’t diminish my gratitude for its consistency. But more than anything after a summer normally of missing things - it’s my retreat for some solitude. It is when I feel like I can exhale after trying to participate in my hometown where there is always something or somewhere I am inevitably disappointing in my early exit or failure to arrive. However, this is 2020 so nothing is normal.
During the pandemic my mom has been my only caregiver. She was with my "team" in Phoenix for two months as this was not the first time someone quit with no notice and within 24 hours she got on a plane to come to my aide. It was March 17, 2020. The day before the NBA shut down and I had a talk with one of my college age caregivers that her spring break to New Orleans didn't appear feasible. She was over an hour late and then I learned later she had been sobbing on the kitchen floor downstairs because she knew I was going to mention spring break. Oh my the luxury of such tears. When I hired her I told her this isn't an easy job and you must have thick skin. She said she did; assured me over and over again she didn't take things personally. I said here is the thing everyone says that; very few mean it. You are an extension of me. I feel sick even when you can't see it, most nights I don't feel well so when you come in the house in the morning often I've been dealing with a mini war with this body throughout the night. I don't want help, I have to have help. This is not Real Housewives of Scottsdale with a staff. I don’t want you here so I will get snippy, I will not want to talk some days, I will be a huge pain in the ass and it is not about you. It is about me for the last decade trying everything I can to get out from under a disease without a clear diagnosis nor clear treatment path. She assured me again and again and over the next few months again and again I would be apologizing. It's not you, it's me.
Well COVID hit or started rolling in like a tsunami where just when you think there is calm everything gets swallowed up and she preemptively quit. So March 17th, St. Patrick's day my mom arrived for what we thought was going to be a short visit until I had the schedule figured out. That never happened, she stayed for the next two months until we left together, nothing as planned. March 17th was also the evening I said I have a really sore throat, and then my lungs began to burn and my body hurt in a different way it hadn't before. Eight days later I finally emerged from my bedroom and made it downstairs. The initial two weeks is a complete blur; I didn't really even think it could be COVID. I am sick a lot, feel fluish a lot but everything about this was different. It was the first time I could feel a separation from my body and an illness. Normally we are one. It is very difficult to mount a fever with this illness; and I didn't but I felt like I had one and was drinking 3 liters of water a day without a second thought. I had no taste for sugar ( I could taste and smell). I also had a weird rebound energy where I knew I had to do lung exercises and did them religiously. It was strange because it never crossed my mind that it could be COVID; yet I also haven't had an acute illness in over a decade. I think I was so sick I didn't have time to analyze what it was I was talking with my doctor, doing my nebulizer breathe in breathe out best you can and sleeping. Is it COVID? I think it crossed my mind but my doctor seemed unfazed. I was vigilant thou in a way I had never been before. I was so grateful my friend and distant reiki guru helped me get centered and breathe every other day. I took absolutely every tincture, remedy and supplement I was told. I was 100 percent compliant. Numerous times I felt scared; but not the fear of COVID this was before the enormity of the pandemic; just afraid because my reactive lungs were reacting. One of my best friends months later said in 25 years that is the longest I have gone without talking to you ... it was ??? Yes she said. If I called you could barely speak and I would just say go back to sleep. Huh...it was bad.
I still had our other help and downstairs was a flurry of getting supplies, stocking the refrigerator, washing things constantly. My help is always very conscious and I was isolated in my room so it doesn't surprise me no one else got ill. I isolate often. I still remember being able to make it downstairs it was the end of March and it was the first time I had spent anytime with my mom since she had arrived. It became apparent my mom wasn't going to be leaving Phoenix; to this day it is the longest she has been apart from my dad. I wish I could say I could understand that more viscerally; but I just can't anymore. I live my life in 6 month segmented fashions. I've been single for a long time now. I depend upon the people that care for me and except for Chrissy that has been a revolving door of amazingly kind and competent individuals to the polar opposite which have included assholes, to weirdos, to comically horrible at their job - but even that has been a constant.
I saw my doctor every two weeks during this time frame keeping to my schedule that I would be in AZ until May. I never got another blood treatment but did get a few IV's the last one I was too weak to get a vein even for saline. After making the most progress and feeling the best I had in 8 years I was now back to before. My mom and I flew back in mid May; our flight had been canceled and my Dad during the COVID chaos and the arduous time of me being ill, my mom being solo and my new addition Daisy had us fly home private. Now this was basically my fancy life dream...the gratitude I have no words for but the experience I was numb. My ears were still constantly plugged so I felt sea sick the entire time; and this adventure was coming at a financial cost but more importantly the reality that everything had changed; even knowing that I couldn't imagine how much.
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| Peace |
It took being back in WI where everyday I had intense deep body aches, every evening a headache that I would put my hands on either side of my skull as if to keep my brain from exploding and then the fist full of hair that I lost did I finally wonder had I had COVID? I am high risk with asthma; but historically individuals with Myalgic Encephalomyelitis even thou a viral infection is most often the source of the immune system going awry we also have both a hyper and hypo reactive system. Therefore, the cytokine storm that could be responsible for some of the issues could be more difficult for someone with my illness to produce. It was all these after effects none of which I had ever experienced before, certainly none for months on end that made me wish I would have done a COVID test at the time. I did do a finger prick antibody test at the end of July and it was negative. However most of my research between my possible lack of large antibodies production and the time frame a negative just means no longer. I wish it had been a yes to be sure; but it reallt doesn’t matter. What matters is that for 8 months I was back to forcing through a day. Everyday.
My body often aches and feels old but light touch is what irritates me. These were deep body aches like having an acute flu. Christine who helps me gets migraines; I mostly can tell when she is dealing with one and always acknowledge how lucky I am that I don't get headaches. Yet now every night almost 6pm on the dot when the sun would set my head would just throb. And the hair, my goodness the hair. I became scared to wash it or touch it as clumps were coming out in my hands. Robin, who cleans for me said in her kind of back handed sarcastic way "my god your hair is everywhere I can't keep up with it"...yeah I know. It wasn't until the middle of November when these symptoms finally started to give after changing some medical protocols and I have sprung baby hairs that spike up in the morning that the most logical conclusion was I had had COVID; and my body acted like a long hauler...as I like to call them short haulers....
I couldn't comprehend it had been 8 months of dealing with more acute symptoms on top of my normal baseline. Last January my helper Sarah had commented I saw you on the golf course I think 3 times in 2019 this year and you've been doing 20-30 minutes 4 days a week for two months now. I can't tell you what that felt like. I was going to kick this...I finally had given myself a little sliver of light to believe that. Now nearly a year later - I can't find the words; truly I can't. I also in the after math in those 8 months dealt with clinical depression.
If you have followed me I have written often the distinction between being sad or down because you have an illness and clinical depression which I have never suffered from. This was again a new revelation. I will say of all the post March 17th symptoms the depression scared me the most. I have had variations of pain and mild hair loss but the absolute apathy a void of oblivion I had not experienced that before. There was more than one day I didn't want to do this anymore. Not in a dramatic hysterical I can't take this fashion, a more resolute I see no light. I see no joy even thou I know it is in front of me; it is out of my reach. I will hold on but I certainly don't want to. I just added this; I feel like a lot of this time I had blocked it out - I haven't been able to write or journal - much of this is coming back as this writing like trying to grab words when they float in front of me, an effort. The effort is a luxury in of itself to feel well enough to try- to do. The fact that I need to try so hard at one more thing that had come easily makes me feel less and less like myself; whatever myself even is anymore. Those pieces...I’m searching for those pieces hoping when found I recognize them. It’s like when you lose something and you know it will turn up; and often is hiding in plain sight. I feel as if these pieces are scattered all around and I’m expected to scavenger hunt my way back minus the clues.
I have a different grief that I have been struggling with; one missing not just the Arizona winter but Christine. She is my family. Over the last seven years since I poached her from Nordstrom Spa she has been my rock; no pun intended as she calls my condo complex Fraggle Rock - and for that reason alone you can imagine how much I miss her. She is a better extension myself than I am. She not only is incredibly good at this job; she somehow in spite of not knowing me before often seems to see me the clearest. She reminds me I am not just taking up space. She is the most unspunky cheerleader one could ask for; and we laugh we are always laughing most often at each other. Everyday she finds the absurdity in this illness and when I'm at my lowest will make some wicked comment or we have elaborate stories about the people we see on our slow walks. She is the gift I never saw coming; she would roll her eyes but she has been a real life guardian angel. She is ferociously protective of me; because she sees it all. She finds the cruelty more than I do. If you have someone that never fails to have your back and sees the best version of you; that is a blessing to hold on tight too. There is a mutual respect; she is the person I spend the most time with over the last 8 years and it may be a year and half before I see her again.
My mom has a much more difficult job she has to see her daughter struggle every day just to be, not to be the doctor she went to school for or the lawyer she had thought she may become. Not struggle with where to travel to next or volunteer at or create a career. Struggle trying to participate in what was once normal life: a dinner out, hosting parties, running and golfing. It is a thankless difficult job watching someone you love suffer - I know her or my dad would change places in a heart beat and if they could I wouldn't let them. I wouldn't let them because this is easier than watching it - I've been the witness to illness and it is a different kind of helplessness. Selfishly I wouldn't want to change places.
I also miss my freedom or kind of a pretend freedom of leaving one home for another. This pandemic was the awful mirror I not only try to avoid now bc of my hair loss and weight gain but because it highlighted my lack of dependence. I often can take mental breaks; but knowing people have to distant when you depend on people has become the reverse fortune of compound interest. The pandemic has also highlighted how abnormal and challenging a confined life that I have lived for the last decade really is; because now there is a mirror and support for all those struggling - I know it is hard. I just didn't realize how hard when it was mine alone.
So here I am staring out at my beautifully lit fir trees which was a splurge to myself for needing to stay in WI for the winter. When I was deciding my parents said it's not just for you think of how much you enjoy other's lights. And it has been so true nothing has brought me more joy than these lit trees in the dark winter nights; even more the unexpected notes and hellos from neighbors and strangers saying how much they have lifted their spirits. How they change their walking route. The little unexpected joys, gratitude. Always seem to feel better gifted than received.
My mom has been wrapping Christmas presents that my dad will drop off at my sisters while most days I'm still having a difficult time until evening of feeling very decent. Today I had made it outside to throw the ball for Daisy and came back into my bedroom. I was staring at the tv no interest and sat at the dining room table my head in my hands and just started to cry. My mom asked if I was okay; and I said no. This is going to be over for everyone else and yet when it is my life isn't going to look much different...everyone has been living a mini version of my life and yet it is still bigger than mine for the past decade. All I see and hear on the tv is how to help people cope. The world has opened up with everything being live streamed to help everyone get thru this; yet where has everyone been when I have been crying out that this is hard. I haven't enjoyed a casual dinner at a restaurant in over 6 years. As I cried to a friend one day worried if someone got sick who would help me - I can't even cook for myself. She laughed and said when did you ever cook for yourself! Of course you don't use your limited energy on something you never enjoyed in the first place. You never owned any pots or pans - all you did was eat out and then you never dated someone who didn't love to cook...must have been one of my few Darwinian survival skills. Laughter. Someone who remembers my life before; such a gift.
I remember when I was young my family always went to see the Christmas Carol. The entire play had me sad; not just the ghosts - actually the ghosts were the least of the problem. It was the orphans and the beggars the haves and the have nots. The regrets of the dead the loss of hope for some in the present. I was thinking a lot about the play the last few nights thinking everyone has been given such a gift. The ghost of Christmas future has come and given the warning; and not just people dying from COVID but the small percentage but significant number that are and will be in this long hauler aka my world category. I think to myself what I wouldn't have given for that towering black cloaked Ghost of Christmas future give me a roadmap to try and defy this fate...you do these things you can lessen your chances of the life you had built falling like a house of cards and needing to rebuild it all over with a far different playing deck. We aren't even going to give you cards, you will have to figure that out yourself.
As I watch so many individuals; and I don't know their reasoning. I have some theories; one of which is no one sees the personal fruits of their sacrifice. There is no one handing out a blue ribbon for the person you might have saved or the person who may have saved you. Whatever the reason; this has been an incredibly difficult time to see your life change in a blink of an eye. Things that once felt secure be taken away. Freedom of movement restricted. But for most of you this will pass....this is a moment in time. Take this moment and learn from it; be proud of how you handled it. Please do better than your best to make sure of it. I would have done anything to be given a warning; some tools to possibly sail my ship differently. And when this awful veil in our history is lifted; what I ask of you is not to forget those it left behind. I am still no where close to where I was touching moments of freedom last November - March. It feels like a cruel joke to have made the most progress and then be taken down. My brain still hurts and I'm finding more difficulty than before finding words. Although as the phrase goes you never know what's on the other side of the mountain...if I hadn't been the strongest I had been perhaps this story would be very different. I will continue to do my best, and hope on many days it's better than I hope. Peace. To the New Year. Hang on.
This is dedicated to as of today the 330,941 Americans who have lost their life to COVID-19; many of whom died alone; No one is a number. This is also dedicated to Amanda Kloots; whom I have immeasurable respect and gratitude that I stumbled upon her story and grace. Rest In Peace Nick.
This is also dedicated to the current estimated 10% of all infected that are looking at a possible non full recovery. UC Davis and Harvard Health are looking at...I can only hope this will open the door for the over 1 million Americans who have suffered with ME/CFS for longer than this pandemic has existed.
HARVARD TRAGEDY OF COVID LONG HAULER
NOTE: I would argue the tragedy is that ME/CFS has been so maligned for so long where there could have been answers there are not.
"Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.
Dr. Tedros Ghebreyesus, director of the World Health Organization,
also has expressed growing concern about the chronic illnesses that may
follow in the wake of COVID-19, including ME/CFS."
Finally, in my blog from a year ago I said I was consulting. I am and this moment in time has made me uniquely qualified. So you may call, text 602-300-4870. Or find me on Instagram at DaisyMae.33 I am charging a what you can afford. If you are reading this you are not alone. And I will do all I can to help; if there is a silver lining my insight has met this moment. Be well.
A few resources for Long Haulers.
Finally to the front line workers, essential workers, health care heroes who have held the hands of those someone loved. Thank you. There has been so much pain; may we begin to heal together.
