I am decluttering. There is just way too much. I cannot move. I am tired.

This poet’s poems amaze me. He has gone through a very similar cancer and transplant journey. He stuns me because he has put into words an experience I can barely think about. He is helping me declutter.

http://chrisricecooper.com/386-backstory-of-the-poem-the-butterfly-effect-from-the-chapbook-poetry-collection-chimera-by-brad-buchanan/ .

These poems are helping me unlock doors of experience which I have been ignoring. I am stubborn, for sure, but it is time. I long for minimalism.

Perhaps I can open the window and the trapped furies will fly out. I have become Orestes seeking vengeance and plagued by furies.

The curtain will flutter with a fresh breeze. I can take a deep breath and I will find equanimity

I am now the variable in a nonlinear equation.

       suffocating

[ˈsəfəkādiNG]

ADJECTIVE

1. causing difficulty in breathing:

“the suffocating heat”

• making one feel trapped and oppressed

Breathe in for three counts, hold for three counts, and breathe out for three.

When I had increasing pain in my spine and hips, imaging showed issues with my discs. My doctor said this could probably be easily surgically corrected, and he sent me to the new bone clinic. I didn’t realize I had not been sent to your typical orthopedist. I had been sent to an oncological orthopedist, so he did not look at my discs. What interested him was a lesion in my spine. He told me it was in a difficult place because it was in the center of my spinal canal, near where my spine joins my skull, where all your neuro activity goes into your brain. It was such a touchy place that she did not want to biopsy it because that could easily kill me or make me a quadriplegic. Hence, he said I should see an even more specialized spinal oncologist to see what they thought and to get a pet scan.

Breathe in, breathe out.

I found the new specialist’s waiting room but did not realize where I had been sent. When I looked up, I saw Brain Cancer Center. I looked around; this was unlike the cancer center on the 21st floor. There were very incapacitated people with scars on their heads. A deafening scream erupted inside me.

Why am I here? gasp

How did I get here? gasp

How could I have a third kind of cancer in 10 years? gasp

My head and heart exploded. I could not process this experience. I started breathing rapidly, and I became very dizzy. I went into a panic attack for the first time in my life, through two kinds of cancers, a stem cell transplant, and losing custody of my children for a year because of my health; I never had panicked.

I closed my eyes to escape my reality. I detached as entirely as I could to breathe in and out.

In and out.

Then slowly cracked the door open and let my reality enter at a reasonable pace, and control. Equanimity. When I saw the specialist, he explained he would order a pet CT scan. Still, his biggest concern was my panic attack which had sent me into an adrenal crisis. My blood pressure was rapidly dropping I had to go to the emergency room. It’s a particular emergency room for people in crisis with cancer. There are only a few people. It is quiet. I could shut my eyes and leave.

Because of my adrenal insufficiency, I could not produce the cortisol needed to power me through a stressful moment. IVs were hooked up, and I had to leave my reality and just

inhale…….exhale.

When my PET scan came back, the lesion appeared non-malignant. They didn’t know what it was but were convinced it was not dangerous. Okay, well, time to get back to my back! The scan did reveal a problem in my left hip. It turned out I have avascular necrosis from being given excessive amounts of steroids to treat my cancer. This means it caused the blood supply to my femur to be shut off, so the bone died, the primary bone going into my hip joint. So, I was sent next to an orthopedic surgeon. She looked at my imaging and informed me I did not qualify for hip replacement because I was too frail.

Frail, frail, frail, frail.

Who me? Frail? I was a sickly, scared, shy child, but I had worked my entire life to become a strong woman. Don’t call me frail, bitch. She told me I would not live through the operation. “What’s the next step? What do we do now? How do we fix this? “She said there was no way to fix this. I said what will we do about the pain? She said it would only get worse. There is nothing we can do. I have never been told this before.

Three in three out

Breathe in, breathe out

She felt bad about my pain. She wanted to help me in some way. So she said she could give me a shot that helps some people.

She injected a colossal shot of steroids into my hip. She forgot I had AVN. She forgot steroids had killed my bone.

It got worse.

Pant, pant, pant

Now I walk like a lopsided drunk. I usually need a cane, a walker, or a wheelchair; sometimes, I cannot move. Pain is constant. I am and always will be an addict.

that sucks

most of the time

It has become challenging to take my handful of pills each morning. I try to sleep in. I sit and stare at them in my hand. I know I must take them to stay alive. I also know they poison me.

I am breaking down.

My right hip is starting to hurt, too, as predicted. My spine is degrading,

remember to breathe

in and out

There is an expanding gap between my mind and spirit and my body.

I am a foreign body I do not recognize.

very long slow breath filling each section of my damaged lungs,

then a little more,

in

then as slowly as possible out

I must move most of my belongings out of the physical world

I have found a new address for my stuff. It is in the cognitive and spiritual world

I do not know my way around here.

It looks interesting, plenty to explore.

Each breath brings in cleansing, fresh, new air.

With each breath out, send out all the toxins and bullshit

I can not exhale long enough

I will practice

I have become a poem.

My experiences and thoughts are no longer linear.

My stories are not cohesive.

 I lost my glue.

There is no plot, no beginning, middle, or end. No path to follow cleared from the forest.

Fuck being linear.

This might be fascinating. Maybe I am lucky to get lost in the woods.

Gertrude Stein did not see her work as automatic writing. She stated it was an “excess of consciousness.” She lived in Paris in the ’20s. She listened to jazz with cubist painters. She wanted to find a written equivalent to collage or music.

She slowly breathed in. She breathed. Breathed. She. Slowly. She. In. She. In. She In.

An excess of consciousness

breathe

in

out

in

out

I am trying a writing experiment. I know I promised a post about my third boulder, and I have not forgotten. It will come next. In the meantime, I want to write down some strong imagery that has come to me repeatedly.

Every morning, when I wake up, I find myself in a space that lays in between the unconsciousness of sleep and the awareness of being fully awake. I am not sure what this place is, but I love it there. I am still relaxed, and I have my best insights lying in this state. I try to prolong it by repeatedly going back to sleep and waking. Later in the day, I remember what I was thinking, but it is far away and out of focus. I get the feeling parts have evaporated. I tried briefly to research this state of mind, but I don’t think I have found the correct definition yet. Freud wrote about the psyche having three components: conscious, subconscious, and unconscious. It really isn’t any of those states. Jung comes closer with his definition of the subconscious. “Since there is a limit to what can be held in the conscious focal awareness, an alternative storehouse of one’s knowledge and prior experience is needed.”

OK, whatever. Psychological jargon aside, I am intrigued to try to write from this state. My physical challenges have increased. It can be harrowing to sit up, for now. Also, my fingers have more nerve damage, so typing is difficult, but I found a great solution. I got a voice-to-text app, which allows me to lay back and write directly from my psyche. Don’t be scared of what lays in there; read on for my first attempt!

In my freshman year of college, I got a job working in the library’s reference department. It’s crazy to imagine now, but pre-internet, you needed to use books to find information. To find the books you needed in the library, you used the card catalog. The card catalog was magical. It was the key to knowledge. Arranged in many long drawers were small, worn, dusty cards. The cards were a manila color with typewriting on them. Upon pulling out a long drawer, a smell wafted out, similar to an old attic smell. The location of the book you were looking for was noted using the Dewey Decimal System on each card. Cards were arranged by subject, title, and author. On top of the catalog were small boxes containing recycled scraps of paper and small pencils you used to note the location of your books. When I got my job in the Reference Department, I was so excited, thinking I can find out anything now! The thrilling power of knowledge coursed through me.

I imagine my life experiences as small cards all the same size, lined up one after another. They are attached to me like a tail, drifting out infinitely into the sky. I feel the weight of my cards as I pull them along. The cards are all the same size, but they have different masses. Some are very light and weigh almost nothing. These cards are my experiences of joy and happiness. They are scattered along my line of cards and have a bit of a glow. Conversely, some cards are heavy and grey. These are cards of trauma, pain, and depression.

After I have processed an experience, a new card is added to my card file tail. Sometimes if I have added too many heavy cards, I am unable to move. The weight paralyzes me. I can not remove any cards, they compose my existence. The only way forward is to become psychologically stronger so I can pull that weight. Or to make some of the cards weigh less. I am unsure how to do this, but I am working on it because recent cards have a heavy mass. Maybe joy cards can subtract the weight of heavy cards? My tail of cards needs to float back into the sky, wavering in the wind.

(in the previous blog post, I reported I have recently been hit by 3 boulders and described the first)

Then along came boulder number two, crashing hard.

It was the middle of April. A Pet/CT scan found nodules in my lungs. A Pet/CT scan is very different from an X-ray. It does not just give you an image. It measures cell metabolism and activity. Unusual areas show up white, and the level of metabolism is assessed. I had two nodules that were classified as significant and fitting the criteria for malignancy. Seriously?!! Lung cancer? That would make three distinctly different cancers in five years? Who gets that? What kind of toxic blob was I? Why were my cells mutating so much? What’s next? OK. SLOW DOWN. DON’T GO THERE. You have no idea what is going on. There could be many explanations. My mantra became, wait for the biopsy, wait for the biopsy as I worked my meditation beads. I calmed down. I felt optimistic. 

The biopsy was supposed to be a simple outpatient procedure. I would receive twilight sedation (still awake), get the biopsy, get an x-ray to make sure all was well, an hour later get a second x-ray, then home. Easy peasy. 

A different radio station came on. I thought it would be smooth jazz. The biopsy seemed to go OK. I was in recovery, waiting for my second X-ray, munching on some animal crackers. I started to feel a little weird. I said, “I don’t feel so great.” In the next second, my smooth jazz station rolled over to deafening death metal. The room was spinning so hard I thought I would fly off my table; I got confused. I thought I would throw up. I could barely retain consciousness—the room filled with personal. I coded. My blood pressure was crashing fast. IVs were rapidly stuck into my arms. An ultrasound was wheeled in. I started seeing everything happen in slow motion. My viewpoint moved out of my body to looking down from above me. I calmly observed a scene of silent chaos. This is before they gave me drugs. I thought this is it. I am dying. Later I found out this was true.

I started to stabilize a little, came back from the sky, and all kinds of things were happening simultaneously and rapidly. The ultrasound showed my blood was leaking into my pleural cavity. They thought an artery was nicked. It turned out later to be just a vein. The staff was trying to find my brother to give consent for another procedure because I was still under the influence of anesthesia and could not provide consent myself. He was traveling and impossible to reach. They needed a very clear image so a chest tube could be inserted to start draining the blood. They wanted to inject a dye into me for the ultrasound. I am highly allergic to this dye and go into anaphylactic shock. There was no choice. They had to do it; they would pump me with Benedryl. Oh SHIT. This wasn’t good. My life was to be risked to save my life. Been there, done that, not good. A distorted vision of an anesthesiologist appeared over my shoulder. She explained that because I had just had anesthesia for pain, she could not give it to me again. She could give me more fentanyl but nothing for the pain. DAMN, this was going to hurt like hell. Time to experience next-level pain. Interesting. 

I am very pain tolerant. I take myself far away. I do not make a sound; I do not whine; I do not complain. A large chest tube was jammed into me, and I heard an eardrum breaking, raw scream. I did not know what was making that sound. It was me. That was the first attempt. During the final attempt, I fell into a black hole.

I do not remember much about my first few days except the pain. I know I talked to my friends, brothers, and sons, but I don’t know what I said. I can not remember my room or nurses at all. Demerol dripped steadily into my arm and took everything else away. I went to another world and was no longer present.

In a few days, I was transferred to my home away from home, the stem cell floor in Prentice Hospital. Most of the nurses, orderlies, people who deliver food, room cleaners…. all know me well. I would be safe here. I became more aware, but the pain was still mind-blowing. There were nights I rocked in my bed, crying and yelling over and over again, “I want to go home.” Well, that was new.

Blood slowly dripped out of my chest tube for five days into a box on the floor as an IV slowly dripped in replacement blood. I could not walk or do much of anything. This was worse than cancer. I lost an incredible amount of progress I had struggled to achieve.

Finally, I could think enough to ask about my biopsy. Did I have lung cancer? Maybe there was some badly needed good news. The biopsy was inconclusive, and I was way too weak to do another one. My doctor said to me, “I don’t know why you are worried about lung cancer; you are way too frail to treat.” What??? This was Northwestern. They invent treatments. They never say never. They developed the double lung transplant last year. Couldn’t they pop another lung in there? I asked him, “no chemo, no immunotherapy, no surgery?” He slowly shook his head no. I thought I am so fucked this time.

About halfway through my three-week stay, two extremely young, unfamiliar doctors appeared in my room. They were from the department that did my biopsy. They asked me a few quick questions, they moved to a corner to put their hands at the sides of their mouths and whisper about me. It felt like a bad scene from high school. They returned and informed me I would not be strong enough to be released into a rehab facility. I would not be able to endure Physical Therapy. They would be recommending I get moved to a permanent long-term care facility. HELL NO! Not going to happen. They did not know me. They could not glibly make a life-changing decision for me—time to leave the lovely Demerol haze and get to work. 

I went off all pain meds. I started sitting up in a chair all day. I knew the schedule of when everyone entered my room. I started slowly taking forbidden walks around my room, holding the bed at first. My beloved younger brother, my stem cell donor, my blood brother called my Doctors and very clearly told them never to let anyone use the words “Nursing Home” to me again. My PT was amazed at my progress. I had to get home. My twins would be graduating from HS in a few weeks, and I would be in the front row, and nothing would deter me.

After the three worst weeks of my life, I was discharged and allowed to go home mid May. I have PT 3 times a week now. I still do not know if I have lung cancer. A repeat scan still shows suspicious nodules. But I am still too frail to be treated. So that has gone in a box on a shelf for now. I have become disabled compared to where I was a year ago. I am usually out of breath and walk with great difficulty for very short distances with a cane. I cannot stand for more than about five minutes. I frequently need to use a wheelchair. 

But I am home. At the end of May, I sat next to my brother in a wheelchair in the front row. My brother helped me stand, so I could applaud my sons marching past in their graduation robes.

It’s been a few months since my last update. I wish I could report that is because all has been well. But that is not the case. I have been trying to go over, under, or around three gigantic boulders dropped in my path. It has taken me some time to chip away at them and get them to a manageable size. A size I can hold in my hands and turn over and examine and discuss, knowing they can’t crush me. I have experienced so much I will be splitting this into three separate posts. 

Along my cancer journey, many hidden gems have enriched me, changed me in a good way, or helped me to a new understanding of myself and my experience. One of these gems I have just more fully acquired is understanding how I process “setbacks.” One of my shrinks, some of us need a couple ;-), pointed out I was in a stage of grief. I was realizing I would never be my old self. I would not participate in many activities that I loved, and that defined my life. I was devastated and disoriented. No more hiking, dancing with friends, buzzing around everywhere, having fun, traveling! What does this leave me? Who am I now? What can I be? This is not just something I could suck it up and digest in one enormous bite. I need to allow myself to go through stages or steps of grief, very similar to Elizabeth Kubler Ross’s famous stages of grief:  denial, anger, bargaining, depression, and acceptance. After going through the last several years and continually adjusting to my reality, I see this has very much been my pattern. But each time, I did not see it as a necessary process. I thought I would be forever stuck on the stage I was in, paralyzed. It helps me quite a bit to understand I am moving forward and not sinking. 

I don’t exactly go through denial, I know it is true. Instead I become absolutely paralyzed. It is more than I can process. I shut down and can’t talk or think about it. I sleep to escape, then gradually start peeking out from under the covers.

Anger is next and I get pissed! I had been sure I had hit rock bottom and was on my way up. How could this possibly be happening again? I am physically and emotionally completely beat down and exhausted, I can not handle this. I will find a way, there is something out there. I start reading professional medical journals.

I have already made enough bargains for several life times. I can skip this, I have nothing more to offer.

There is no way out, its happening. With this realization comes a very dark, very deep depression. I am barely able to function. I never realized it before, but at this point I am near the end of processing my grief. I start pulling my nose up, I have always found that door, the door with the light behind it. I can find it again.

The final stage for me, is what I am doing now. Yanking it out of me, externalizing it by writing about it. Don’t let the door hit you on your ass.

Boulder number one. This boulder was entirely psychological. I have already been discussing it. I have been confused and disoriented. How much of my old self was left? How did I get here? This is not my beautiful life. This is not my beautiful wife. 

So all that is gone. Is this possibly a good thing? Was I a chaotically overgrown tree in need of severe pruning to allow new growth, and sun and air? What could this now enable me to experience? I joked with a friend that all these experiences had enriched me enough. Fuck Nirvana, I wanted gritty life. I pass on enlightenment. 

However, maybe the ability to indulge endlessly in thought and sensation was something few people had the luxury of experiencing. Perhaps I should open myself and embrace it. Maybe I was moving houses, from a physical address to a cerebral and spiritual address. Perhaps I should go bald again. I think an orange monk’s robe would work well with my green eyes. Laundry would get quite simple.

Then along came boulder number two, crashing hard. BOOM!

I wake up feeling neutral. Sensing if it is light out yet. What time is it? What is the temperature? There is something on my face – my new CPAP mask.

Reality starts flooding in quickly. I am in bed alone. There is no one here to comfort me. There are weird red splotches on my arms. My eyes are so dry they hurt – I have Occular Graft vs. Host disease. I am missing teeth – losing them from harsh medications. My foot hurts – it is badly bruised from a near break. I am wearing a diaper. There is a tray of drugs I need to take. It’s hard to breathe. I am bloated from steroids. I see a cane I need to use now. I feel myself slipping down into a dark abyss. This is more than I can take. My past and future dams break and flood into me unchecked. I try to return back to the ignorance of sleep to no avail. Sleep is so much better than this. Down, down, down. I had breast cancer. I had Lymphoma. I had a stem cell transplant. There is a pandemic. My vaccines did not work. I am starting my 4th year of isolation and sanitation.

There is something wrong with me. I am sick again, and we don’t know why. Spiraling down, down, down. I had a PET scan last Thursday. My doctor called me on Friday. There are a few findings in my lungs that appear to be malignant. Lung Cancer. It may have another explanation, but the word malignant was used in the report repeatedly. The next step is to get a biopsy, hopefully, this week. I may have lung cancer. My dry eyes fill with tears.

How could anyone have 3 different kinds of unrelated cancer in ten years? There is very little cancer in my family. Why are my cells mutating? I am a mutant. I can’t move. I am completely deflated and flattened. The world is a mess. There is a pandemic and mass shootings, and hatred. I have no mindfulness; I can not “be here now.”

I feel myself falling down a well of fear and despair. I can not allow myself to hit bottom. I have been there and do not want to go there today. It is time to start pushing back these furies. To push that shit away and create space to breathe and think. Time to lasso my ugly past and intimidating future and make them smaller.

In Homer’s Iliad, the Furies can prevent an individual from using their reason and so lead them to unusual and stupid acts. They live in Erebos, or darkness, and have no pity in their hearts. They cursed a king with temporary madness.

Can I envision a future for myself that is happy? That is impossible. There are too many unknowns. I must focus on now only. Ultimate Mindfulness. Equinimity.

Try again. Where am I? There is peace. We are safe. Breathe. I hear birds. It’s a sunny day. The trees are turning green. I can see my neighbors beautiful garden. I can listen to my old cat snoring. I see my art on the walls. I see crafts projects waiting for me. I am safe. Breathe. I live in a lovely house in a pleasant neighborhood. I see pictures of my friends and family. I am not alone.

As I go to the bathroom, I see my kids sprawled peacefully in their beds. What can I teach them today? It’s a family fun night. What will we laugh over? I see a picture of my Dad. I miss him intensely. I pause and feel his love and hear his laughter. He is still here with me.

I need to get music on soon.

Maybe I will take a pleasant drive with one of my kids, who is learning to drive. Is there something positive I can do today?

My new kitten Bonnie starts being silly and comes for a visit.

I need to get busy. I need to get distracted. I have learned this is not an entirely healthy response. It is something victims of trauma and PTSD do to avoid overwhelming pain. But until I get my biopsy back, I need to be kind to myself. If staying busy with all my little projects keeps me from the bottom of the well, it’s OK. I will work on being quiet when I can. This is not the week.

My kids wake up, and I hear them laugh. My kitten is silly. The world wakes up around me, and it is beautiful. I love life, and I have today. Breathe.

In December of 2019, I ended the year by boosting stem cells from my brother. 2019 was my first post-transplant year, and it was filled with many different infections, which frequently landed me in the hospital. I could not make or maintain my different blood components correctly, so I had to get transfusions a few times per week.

The boost worked wonders. 2020 started out great. I was getting stronger by the minute. I had been told when I started treatment for my cancer, a cure was possible. I previously had breast cancer. I was fortunate and caught it at a very early stage. After a lumpectomy and some radiation, I was pretty much back to normal. As if nothing had happened. So, when I was told I might be cured of Lymphoma, this is what I pictured. I got tired easily, but this was improving. I moved back to my house in Valparaiso because I thought I was over my constant medical appointments. I needed to be with my twins, who are seniors in HS this year. We went on our first vacation in three years in July. I was able to go on mile-long walks. I thought the medical nightmare was over, and it would be all uphill from here on out.

Then a few very unexpected things hit. The first was the pandemic. In terms of impacting my lifestyle, this was no big deal because I lived like this for most of the two previous years. When my blood counts were low, I had to spend weeks and weeks all by myself. I had to sanitize everything that came in the house and wear a mask… However, in terms of vulnerability, this was no good. Because I have a very young, dis-regulated immune system, I knew I would probably die if I caught Covid-19. I also knew if hospitals got too many people at once, and resources were limited, and hard choices had to be made, I would not be a priority because I did not have great odds to survive. After everything I had been through the last few years, I was damned if a pandemic would take me down, so I had to become extremely vigilant about sanitizing and isolating.

Then around August, I started noticing small physical and cognitive changes in myself. I started feeling worn out and getting frequent charlie horses. I was having trouble focusing, became forgetful, had trouble sleeping. Had a gut feeling something was very wrong. My labs and regular tests did not turn up anything. My doctor thought maybe I was depressed. After all, many people were feeling like this as they faced Covid. I didn’t think that was it. Because I was finally healthy and back with my kids. As it turns out, there is a special kind of depression that hits cancer survivors. It’s called survivorship. Survivorship is like postpartum depression. One can get very depressed even though you have made it to remission, and it should be a happy time. It is also like PTSD because you have been through something so traumatic but not processed it. When I was going through my cancer and transplant, I never really got depressed. Sad sometimes, but mostly I was in constant warrior mode, trying to figure out what I needed to do to stay alive. So that made some sense, but I didn’t think it was it. It did not matter for long because I was extremely rapidly declining daily once I hit the fall. By the end of September, I had a two-page long list of symptoms that got worse daily. They all related to my central nervous system. I got every test in the books. My team of specialists grew. I was seeing my stem cell doc, pulmonologists, neurologists, cardiologists, psychiatrists, memory specialists…. A lot was ruled out, but there is still no clear explanation of why I was rapidly declining to this day. I got to the point where I had to go back into a wheelchair;

I had to move onto the couch because I could not climb stairs, everything became difficult. It was hard to talk. I had to focus very hard to say each word. I sounded stilted. I had bad muscle spasms and would randomly bite my tongue and cheek all the time. I lost fine and gross motor control. It was challenging to write. I did not know how to spell things. I was forgetting how to shape my letters. I was very disoriented and overwhelmed. It was hard to complete any task. I constantly forgot what I was doing. It got to the point where I could not even chew and breathe at the same time. I had to switch back and forth. Some days I did not know what year it was. I would be absolutely sure I did something. I could remember doing it. For instance, I was sure I put gas in the car, then it would turn out I did not. On the other hand, I would think I had to do something like put a load of was on, and it would turn out I already had. I did not have an ah-ha moment, where I said to myself, that’s right, I did that. I had zero memory of doing and not doing things. It appeared I had a rapidly declining neuro-degenerative condition. This was extremely upsetting. With my cancer, I had a slim chance, but at least I had treatment options. Now I was looking at things that did not have a cure, like MS, Alzheimer’s, ALS… My grandmother had Alzheimer’s. I was throwing away forks in the garbage like her. I started having trouble breathing, and my muscles became weak. On Christmas eve, I was tested for Dementia. This is not how I wanted to go. I could no longer live independently. I started seeing a shrink. I got put on lots of drugs.

This January, I inexplicably started to get better. I still am extremely weak; I need a cane and can not walk or stand long. I am always out of breath, although my oxygen levels are fine. I feel like I am suffocating, and any physical exertions end with me sitting and gasping like a fish out of water. I have posted this song before, but I do feel like the air has become solid and I can not breath it in.

I have less working memory and my processing speed is slower. But I can think again, and I am no longer throwing out forks. I am glad I am better, but I wish I understood what happened and if it might happen again.I am having difficulty adjusting to my new reality. I know I am not alone. The pandemic has created a new reality for everyone. Normally I am extremely optimistic, and one of my strengths is my ability to adapt quickly when things do not go as planned. So why was I struggling now? I asked my shrink this, and he replied, saying I was in mourning. Hmm.
That is what I was feeling, but mourning what and how do I process this and move on? The word “cure” was a culprit in dissecting what was going on. By cure, my medical team meant still alive, able to have life experiences. I assumed “back to normal.” Normal is gone for me. I have to date, aged mentally and physically about 15 years. Those years where one can get out and do things more easily and be completely independent will not be coming back. I will need to always live near a major medical center, no cottage in the middle of nowhere on the beach for me. I need help with daily living. Right now, my sons provide that, but they will be out in the world soon. I am all for mindfulness, living in the present, but I can not make any goals at all, short or long term, because of my current medical condition.

I think I am a microcosm of what the whole world is going through with the pandemic. We are fractals. It’s as though the whole world has cancer. Everyone can not wait for things to go back to “normal” to be cured. However, the world has changed forever. People’s lives have changed. We have experienced societal trauma. Life will be different. Not necessarily in all bad ways, but different.

Continuing down my introspection spiral, I felt there was more I was mourning. I realized I missed my blood. Pretty strange right? I wondered if other people who had transplants felt this way.

In getting my stem cell transplant, my complete immune system, blood, bone marrow was destroyed, using very toxic chemo, and replaced by stem cells from my brother. I am a medical chimera, with two DNA’s, my original DNA in most of my body and my brother’s in my blood and immune system. Because a good match could not be found for me, I had to go with a haploidentical transplant. A half match. This meant I could expect problems. It also makes me feel like Frankenstein.

As though I am patched together from different parts that do not line up well, so they do not function optimally. I love my brother, and I am eternally grateful his donation has bought me more time. It’s weird for both of us, though. We share a lot, but we are also, by nature, pretty private people. So the thought of my blood is gone, and his swirling through my body into every nook and corner is disquietingly intimate. For him, I now know a major factor of him very completely. I recently found out if I take a DNA test on one of those ancestry sites, my results would come back as my brothers. Another part of me is gone. Who am I now? What is my identity?

Interestingly this brings me back to the very beginning of this blog. Equanimity. Losing even more control. Opening myself to adapt to a new lifestyle. Focusing on what I can do, not on what I can not. The hard part, completely letting go of all expectations for now. Big lessons for a control freak/planner like me.

As I do this, I have been apprehensive but also experiencing some happiness and joy. Hope. I have got on the pandemic bandwagon. We are cooking from scratch more. I re-started the succulent collection I used to have in CA.

I have intensely nested, re-decorated, and personalized my home, not making art yet, but baby-stepping with craft projects.

I put art up. I got my camera and microscope out. We are adopting a kitten.

I am doing lots and lots of networking. For work, I have made a new role for myself, marketing and building social media platforms. This allows me to work as I am able. Socially, I have joined a progressive group of ladies and become active in my community, promoting positive change. So I have entered my community, which is new. I am inspired by Freida Kahlo. She spent many long months in the hospital, and she found a way to make an easel that fit in her hospital bed so she could continue to paint.

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So, friends, I know many of you are right there with me or will be soon. Taking it one day at a time. I remain optimistic. With the right mindset, different does not have to be bad.

I’ll end with another source of inspiration for me.

A song by Leonard Cohen:
“Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That is how the light gets in.”

Last week I posted a blog detailing a shocking experience. I failed to get an emergency admission and the critical medical testing I needed.I wanted to wake people up. You can find that post near the top of my blog titled “And……After….All…That….”

I want to do a few things today. I have come across some terrific articles this week, which clearly illustrate one of the priorities I am trying to communicate: that we must keep our local medical infrastructure working so our big idea factories can do what they do best. I have made it no secret I love Northwestern Hospital in Chicago. I know everyone from door attendants to very uniquely specialized experts. They make incredible things happen. When I read about what they are currently working on, I was flabbergasted at how much creativity and brilliance is being used in every possible direction to attempt to tear down every barrier stalling us.

A not so quick aside first updating my current medical status. I was able to go back to Northwestern on Friday and found the environment had gained control. Instead of the desperation and chaos I saw Tuesday; things were starting to run smoothly again. I was able to get a specialized advanced nuclear imaging test, which finally showed there was nothing imminently dangerous going on in my lungs, like the previous fear of a blood clot. We still do not know why I can not catch my breath, but nothing there will drop me fast. On the other hand, some blood-work came back with indicators of some kind of heart disease. I have no idea if this is serious or not. I can not get into a Cardiologist until the Friday after Thanksgiving. I am trying to stay as calm as possible until I find out more: doing mindful exercises, checking out on reality with my kids playing games, and watching movies. Could you send me your bingeable favorites? The following result I got some info back is potentially terrifying. I have been experiencing changes in my physical, neurological, and cognitive abilities in the last four months. It could be something very treatable, like the very rare CNS Graft vs. Host disease. I have had GVHD in the common areas where it shows up, my skin and lungs, and currently, my eyes. It is treated by amping down my hyperactive immune system to keep it from attacking healthy tissues. It’s not a great time to get immune-suppressed, but that’s how it is. I had a brain MRI recently, and it looked OK. This new scan was a follow-up test that looked at my entire cervical spine. It came back pretty scary, but I have no idea if it’s severe or not. Some words I was terrified of seeing are in the report. “moderate to severe,” “gray matter impacted,” “demyelinating.” These are the words that appear with neurodegenerative diseases like MS, Alzheimer’s, Dementia. But I have no idea at all yet. Next week I will be getting an EEG that will show brain activity and then in the beginning of December, a battery of neuro-cognitive tests. I am trying to take a complete break from perseverating this. But it creeps in.

Follow my breath, escape reality to my own little video game island Animal Planet. I play with my niece. Where everything is always calm and happy and beautiful, and I have complete control.

OK, back to the topic. I saw this great map from the Department of Health and Se rices that beautifully illustrates how our local hospitals are getting overloaded all across the country and, in turn, overloading our more significant crisis centers. See map and article going into detail linked below.

https://www.npr.org/sections/health-shots/2020/11/10/933253317/covid-19-hospitalizations-are-surging-where-are-hospitals-reaching-capacity

When I was at the hospital I had several employees ask me if I had heard that they had pulled off the first successful double lung transplant for Covid-19 patients. They were excited and proud. I went to look at the study and was flabbergasted to see just how much they are doing. Its incredible. It made me happy and gave my great hope. If really does explain very specifically why we need to keep our research hospitals unencumbered so they can do magic like this. Its a ton! I am going to attach the article from Northwestern that has links to each of the programs I will list here if you want more specifics. Prepare to be blown away – in a good way for once.

• First ever attempted double lung transplant for Covid-19 patients. They were successful and working on getting this new solution out to the medical profession as soon as possible.
• Launching a registry, seeking 5,000 volunteers for trials. They are exceptionally good at this. They have a whole building of ongoing trials going on. They started one, just for me, that ended up saving my life.
• Uncovering a new vulnerability in COVID-19 spike protein – opening the door, for a simple, potential treatment pathway.
• Their Epidemiologist testified before the US Senate on investigating the impact of Covid-19 on minority and older adults.
• New research documenting the neurological involvement of Covid-19. Time to get the Neurologists on board! This is not just a respiratory disease as originally thought.
• Using new AI powered tools that make it possible to prioritize the most promising studies while ignoring unlikely to yield to results. They are stepping on the gas hard!
• Northwestern researchers are developing a new antibody tests that only require a finger stick.
• Developing a wearable device which creates a data set of algorithms to catch early symptoms all allow medical management for you while you are at home.
• 3D printing face shields and sharing that information
• Identifying anti-viral compounds which can be embedded in masks so they could self-sanitize.
• A medical student at Northwester put together a project of 140 volunteers on the street to help the community with shopping, virtual tutoring, collecting masks and more. These people are making the time to genuinely care. It sickens me to see such true hearts vilified.
• Daily fact checking on public statements to enable research reporting, public statements and social media reports for accuracy. They are trying to take the crazy fear mongering out of our information flow.
• Kellogg and Northwestern partnering to provide strategic consulting to support local business.
• Northwestern Economists will advise the City of Chicago as economic and social recovery planning gets going
• Northwestern School of Law have been accelerating Covid-19 prison release efforts.

https://news.northwestern.edu/coronavirus/research-recovery/

WOW!!!! RIGHT?!!! Makes me fell happy and hope. This wonderful big bank of growing knowledge can only be accessed by allowing specialists to bring their specific skills and creativity to the table. We are not qualified to fully understand the full scope of this problem and decide our plan of action. Our role is to stay out of their way and support them and listen to what they are asking us to do so they can focus on solutions for us. So wear a mask and do virtual Thanksgivings.

Knowing of the incredible acts of love this exhausted groups of heroes is working on for us, imagine how I felt when I heard this from a nurse friend in another part of the country: “We are scared to wear our scrubs into work. There are hostile organized groups that spit at us and yell that we are liars and creating conspiracies. We are scared” This is not an abortion clinic, this is an exhausted ER nurse dragging her ass in and risking her life for us for another unending shift. WTF!!! The first words that popped into my head were “social insanity”, this feels like group irrationality, a crazy cult attacking our healers. Madness. The next word that popped into my head was “Barbaric” are we starting down the path to Mad Max time? That’s when I again checked out of current day reality and relaxed and let myself fall down a very big, very deep rabbit hole.

I have had way, way too much time alone the last few years to pontificate about what is going on and why, and that has brought me to this point. I am a freak. I have an extremely eccentric way of looking at Society and its functions because of my archaic areas of studies and some very detailed experiences which provide insight into some of our system operate.

Ready to go for a ride? You can just stop here if you just wanted to hear about my day or a presentation of data. For the brave, buckle up and lets go!

Probably very few of you know I have a degree in Ancient Mediterranean Art History. I have studied many early civilizations. I have studied the evolution of the brain and societies. This always makes me pull very, very far back deep into the history to the beginnings of civilizations and before when I look at social problems. Yep we are going back to cavemen time even. On the other end of things I have a Masters Degree in Visual thinking. My program evolved from the Bauhaus School from Germany that introduced new ways to design and embraced current technologies. Told you I am an eccentric freak!

When you look over this amount of time, at the rise and fall of of many civilizations . Patterns emerge that repeat over and over and over again that show how societies emerge from barbarism and start taking the steps of becoming a more civilized society. Much of this has to do with the ability to specialize. We can no longer do everything. We need to allow specializations and expertise of skills to develop. So do what you do best. You are not qualified to be an expert at everything. Similarly there are patterns of red-flags that can start showing up even with the most successful and enduring civilizations. Tools start failing. Cracks start to happen. The civilization starts pulling apart and devolving. Sometimes they completely devolved back into barbarism and disappeared. Sometimes they were absorbed into a more successful society. Sometimes if it was not too big, and able to make effective changes it my even be able to recover, at least until the cycle starts again because it is not fluid and adapting. I feel we are at this crossroads right now.

Often successful civilizations have some of the same very developed and every effective social tools. These important tools are used to lay very solid foundational bricks which then can allow social advancement. With out this rock solid foundation, everything starts falling down and you start entering social chaos and de-evolving your society. Each brick has to bear its weight properly. Maybe they started out working well but the structure just got to big on top for it to support what is above. In which case new bricks need to be added. Maybe some of the bricks are not longer 100% of the time holding up the building, they are getting borrowed to be used on a different problem, but they have not been replaced. So down our building starts coming. Our foundation must be stabilized, or down it all comes. I think this is where we are too. Time to look at our foundation and lay out some new bricks.

So what are our foundational bricks that look wobbly and no longer functioning to me? Have we outgrown our foundation? I think so.

Here are what I think are some of our important bricks which are no longer functioning.

Education: What have we allowed to happen here? I remember in HS and college having entire courses taught where we were taught about how to vet information and sources. We were taught about what evidence back research was, and how to look for red flags we had bad info. How to determine reliable information. Where did this important component of education go? Have we overburdened our classroom with non-teaching time and worksheets so critical thinking skills are not developing? This is what I was taught. This seems to be missing now, many people must not have been taught this. No wonder people are scared and do not know what to believe.

Government and Politics and Legal Systems: Our governments have been so completely taken over by lobbying and fundraising they no longer act making the best decisions for public welfare. Its impossible. Even the most sincere, are corrupted by financial pressures. Somehow this has to change completely to make decisions for the public good. They are not, and we are angry and do not want to listen to them. Then you get an emergency situation like we are in, but their is at this point so much trust has been lost their leadership is impotent.

Science and Medicine: again corrupted to the point of being forced to make decisions based on financial and legal responsibilities rather than pure scientific advancement. This has made us mistrust our science and medicine. No wonder there are so many conspiracy theories!

Economics: I am helping my son do eLearning HS Economics and Government right now. Something really caught my eye in the Econ book. It was going on and on, in the biased way our textbooks sometimes do, raving about how great the US Economy is and how the rest of the world strives to be like us. Yep, that resulted in a major coffee snort! lol! But it was the next sentence that drew me. After this long string of advantages the text seemed compelled to mention a disadvantage. It said even though this was a remarkably successful economic model, it was unsustainable.What?!!! As if grew larger and larger and larger, the model predicts a larger and larger gap between the rich and poor. Once this economy had reached a certain size it was impossible to function any more and a very modified or new economy needed to be adapted. Whoa!! Does this sound familiar at all? Does this say we can not fix it? Does this help explain the anger and violence we are seeing building everywhere? Ah maybe.

Creatives: Again have become corrupted by profit and not seen as important. These are our problem solvers. Our outside of the box thinkers that bring new perspectives. Where did this get devalued?

So where are we at to really not keep running into crisis again and again. Do we need to replace some bricks, add more, tear down the foundation and make a new one? Or have we really started slowly heading to Mad Max?

I am not trying to fear monger. I want to start focusing on the bricks of our foundation. I love our society and still believe people are basically good if they are not getting screwed over by dysfunctional or bombarded rrelevant garbage.

Maybe I have just been up too long, unable to sleep because I am pumped full of steroids.

Time to check back out for awhile and go to my happy little island and plant flowers and talk to transsexual flamingos.