It has probably been months since I have been able to share anything significant. This virus, the timing, with life could not have been worse… or better, depending on your perspective. When all the normal rules do not apply, life starts to look even more foreign than you thought.

I sit here outside in my hammock as I watch my animals wander around in the grass exploring, but never getting too far from my eyesight. I had the COVID test yesterday and grew an even greater appreciation for the medical workers in this country. I am not proud to say that I did not do well as the test was administered, my pain reflex (try jamming a pencil as far up your nose as possible to illustrate) – I stupidly grabbed the workers gloved wrist – as I slammed the back of my head into my car seat and I swore – “Shit – Owwch!! Sorry, Sorry, I am so Sorry for touching you… Omg… Omg,” They said, “it’s ok, Good Luck to you, Feel Better” (I am thinking to myself, I can’t possibly have it… I feel too OK to have it, why did they say that?” and I rolled away – realizing how I also (expelled even more respiratory droplets than necessary in their semi-controlled environment) As I roll my window back up after replacing the mask on my face. I thought, if I was her, I would have punched me in the mouth… right there… and she would have every right to punch me in the mouth, because…. I grabbed her wrist – and reflexive things happen sometimes, and sometimes the world is a scary place. She was just there to test me, because I happen to be a part of a high-risk category of people, and have had just a few symptoms for the last month. The only one that limits the bounds of my sanity is the the shortness of breath and the constant pain in the chest when I take any deep breath. So, the HYPERACTIVITY side of my brain needs activity to survive day to day…. but lately if I try to work, or ride my bike, or run my dog, or garden…. anything other than sitting in my bedroom watching Game of Thrones or House of Cards for the 2nd or potentially 3rd time because it is a way to pass blocks of time easier when I cannot exercise the way I want or move the way I want. (although, I am quite inventive with small spaces)

The view from the hammock is nice, the birds are chirping, the horses are grazing, the temperature is cold and breezy, but thank God I can still be outside. The time sometimes reminds me of quarantine during the stem cell transplants, when I walked the hospital floors in masks, and saw others doing the same. But now, I have the freedom to be outside, and it is something I can claim for today. I hope everyone following stay at home orders is doing well, and also those not following orders… I hope they stay well also, and do not infect anyone else as they are out there fighting the powers ‘that be’ with their actions. I am BORED out of my Mind, AND THAT is the honest truth. I could not think of much worth value to share, other than being a COVID testing story to add to the rest.

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Shaking Hands

Someone told me more than once that they know I am serious, by my very first handshake upon meeting me. I do take handshakes serious.

I am glad to hear this is communicated, because often I feel my messages are not clear. Anyway, I was due a bloodwork checkup and a disease percentage check. Honestly, I was half expecting Dr Borrello was going to tell me the cancer was back. I was pleasantly surprised when he said “Well, I can say, You are a lucky woman because you have gone so long not needing treatment.” He reached out a hand and shook it, congratulations. Then we scheduled a full skeletal survey because… we must be safe.

Multiple myeloma is sneaky in my opinion. To be such a big deal, but also possess the ability to sleep in your body and allow you to feel cancer free. It allows you to dream and hope for a future beyond the ten years you estimated you would get because you were so young when it was discovered.

I sat with my almost 18 year old daughter and received that handshake that felt like a high five inside my heart, and the proof to her that I am keeping my promise “Not to die”, and I can subconsciously pressure her to keep her promise she made to me “Not to die”, at least not earlier than Gods appointed time for us.

Life gets better one day at a time, sometimes nothing at all happens, sometimes Everything that Can… will happen, good or bad. I am typing this from my phone, because my computer acts like it was made in the 1990s… in the place my hopeful spirit likes to hang out.

I am happy to say, I am still kicking cancers butt, I was approved for my cannibas card, which I am excited about. This is the only thing I have done, beyond changing my diet and exercise that maintains my remission. It may not help for everyone, but it would be a shame to not try something that can work if you get the opportunity. Regulated use can really make a difference in quality of life minus the fact I have no need for chemo after being diagnosed December 2012…. woot woot I gotta shout some days.

Sorry my last post was so glum, much is happening, I will update soon.

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How do I express what it is like to live a life that feels so foreign to anything I could have ever imaged for myself? The last several months have been a whirlwind of emotions (nothing new, sadly); but something has changed in the way in which I process them. I have been quite happy and hopeful at times – actually seeing progress – or opportunities missed – coming back around.

I love my children, more than I can ever say with words, so maybe that is why I find myself – by any means necessary – seeking safety to provide them opportunities to thrive. Maybe this is why I take failure so hard, I know in my heart I am trying with everything that is within me, to change the course. There is a complete disconnect between the woman I thought I was, the family I came from, and the course in which life has taken.

I have had to accept that no matter what I say or do to help does not mean that there will be a positive outcome. Sometimes you can run a race until your heart stops and still come in dead last.

To almost lose a child on multiple occasions, regardless of doctors, therapists, family or friends well-wishes… sometimes there is nothing you can do to change the course of something that began years before you had any awareness.

Working on a film provided me with some understandings – not solutions. I wanted to reach her, inspire her own passion to help others. I am sure our story can help others (cautionary tales being what they are), but most of all, I think I wanted to stop the hands of time. So many families have lost their children to disease, mothers write memoirs about children that take their own lives… I swear to myself I will not lose my girl, but I cannot control what I do not understand. Part of me hopes that spending time inside the darkness that inhabits the mind of a traumatized young person can somehow lead them out towards light. I foolishly hoped that my ‘faith’ would inspire motivation to fight for a better life. Some illness carries with it… a host of problems that cannot be seen unless you are closer to it. Living on my own, is not something I imagined would be a part of my ‘story’. I crave having a hand to hold when I am overwhelmed, or a hug, or a restful sleep. The last time I remember relaxing, was after my diagnosis in 2013… I was a resident of Barnes Jewish Hospital in Missouri and getting that second stem cell transplant. I remember it was the most relaxed I have ever been… I was alone, but I felt close to God somehow. I used to crave the company of people, friends, family, being a caretaker, nurturer, and a clown for the sake of love or friendship… I am not sure where that person is now.

I cannot rest, I can barely sit still on most days. My mind is weighed down with the uncertainty of multiple myeloma resting inside of my bones, and always wondering if any small sickness is related to the cancer. People cannot “see” myeloma and every doctor seems to forget I have it, until they open my medical records. My finances are a mess with student loans & medical bills that rival the cost of a home, and I would work more if I could – beyond caretaking. Seems impossible to rise above the ocean of debt to breathe freely. If I were alone, my benefits would be adequate – for that I am grateful, but I am responsible for others. My mind is weighed down with what doctors instructions… remain stress free, rest, care for my body, eat right, rest and maybe it will extend the cancers remission. Oh and my daughters doctors have a list as long as my arm that I am supposed to be working on as well. It is almost a guarantee the cancer will come back – especially if things do not improve. Who in this world can be stress-free anyway? What does a mother do if she wants to live, but she cannot inspire her own child to seek recovery for her own sake? A child that only complies to appease a mother, is not living, the fight MUST come from within the self.

How many times will I arrive to discover an unresponsive child, how many times will I need to experience forms of death, and not understand what for?… My faith as a young person was strong; yet I was naive; blind, and insanely hopeful. (I would give the world to feel like that again). Now questions plague me at night. Nothing I was taught or learned has prepared me for the damage that occurs to a soul when faith and belief does not match up to reality. I could have lost her again this week – and each time she comes home; I think she is inching towards recovery because I remain close by, and I stay vigalent… It is hard to admit there is a blindness when it comes to my love. Addiction comes in many forms.

I would ask for well-wishes, but I know that nothing can be done until she is ready to fight it. Time passing is my only constant… The world spins around me, as I stand still, waiting at doors – the wooshing sound of happiness slipping from my fingers, time spent waiting and wishing for what was lost to be found. (or wondering if happiness was ever real at all). I am not trying to bum anyone out, but I must find a way to get back to living a life that matches my soul; so my children have a future to hope for.

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Filming Life

I hear this statement at least once a day, sometimes more when referring to how I juggle the overwhelming responsibility of managing a living on a veterans pension, social security disability, and child support when there are extenuating health circumstances, a fixed income + raising two teenage daughters in the most expensive county – “I Don’t Know How You Do It.” I often reply: Ï just Do it, whatever it is, whatever it takes for a given situation, I don’t hesitate, I just do what has to be done.” Sometimes in life, situations work in my favor, but more often than not, the lesson comes from the failing. I am confident that I am on the right path, but if you were to ask me where that path is taking me? I would have to answer, I do not know yet. I try to get closer to God, in order to decipher situations and feelings, but it is not always easy when confronted with everyday heavy life situations.

Sweet strangers snapped our photo on High Rock. Humans can be so cool.

I started a media production certification program a couple months ago. I can’t tell you exactly ‘what’or ‘why’I selected this program at that particular time. I had already decided that my focus needed to be artistic, to help me process a couple decades of stress and trauma. All I can say is that I needed something for myself, apart from surviving cancer, apart from my daughters health struggles, something with a mission or a task that I could put my passion and energy into.

Something occurred when I made a decision to focus my energy on Eating Disorder Awareness (because it was already a central focus of every day), and the Youth Foster Care system (an older passion). My passion for reaching out to young adults in need of Home Base, and the connections that can be found in institutionalized settings and eating disorders – gave me a little direction and focus, when I was struggling to understand my purpose as a disabled veteran/retiree unable to work in the same capacity as I am used to. This was my initial focus, but like life, it evolved and changed once I brought my daughter onto the project. It took my placing a camera on my child, asking her the hard questions, and LISTENING to her answers, to see the importance of filming Life – Fairly – Adequately – Compassionately, and sometimes the Truth from a young person is much simpler than all the medical jargon and psychiatric speculations.

My daughter has impressed me beyond the words, with her candor, her courage to share her truth, and her heart for others. Disease has stolen almost 7 years of peace from our family… Cancer Treatments or Eating Disorder Treatments = can make or break a family unit if not careful. The journey we went through will be told and I hope and pray we are able to help other familys start some Difficult conversations, before they have to suffer through unnecesarily painful journeys like ours, just to see we have more than wethought because we have each other. I am grateful that life forced me to slow down (I know I would not have on my own), had I not been forced to stop raging forward like a automated decision-making machine in my parenting, I would not have been able to see what my daughter needed… for me to slow down and Hear her, See her, not the disorder.

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mother and daughter symbiosis

…Occurs rarely, but I can attest that it can happen in the unlikeliest of circumstances. The last several weeks were rough emotionally, but slowly became inspiring. I decided on collaborating with my daughter in an interview/informational film on Eating Disorder Awareness. Half-way through my media production program -means I produce a film using whatever equipment needed in the studio and they help me produce it. The media center is the hub for the local public access channels. The nerd in me finds working there pretty cool (no matter what hat I wear). I want to do more pieces showcasing the non profit agencies our area and help them gain more visibility and support.

Starting this process with my daughter was scary at first, but it turned into a project that we were both passionate about. I was able to get my daughters perspective and give her mine, and share research I have gotten on recovery and resources. I am able to understand her better, even when I do not agree with her opinions, I can demonstrate love and support for her.

We have been scouting interview locations all around the city, and practicing with different types of cameras, and using different kinds of natural lighting. She has proven to be very helpful as a personal assistant, with all the audio and video equipment needed to set up film quality scenes. My daughter and I share the creativity gene… we see the rest of the world in little movie snippets, or stories, we see things very differently, but our brains work much the same. She has been working on her Service Learning hours for graduation, by cleaning the studio, and catologing 100s of tapes and dvds, amongst operating equipment in a pinch.

We have learned about the variety of disordered eating, and how undererepresented boys are in relation to girls struggling. There are many misconceptions that the public hold about those with disordered eating, but keeping secrets will not promote awareness or change.

If awareness and prevention starts early, maybe we can have less documentaries and memoirs made about mothers ‘surviving’ their daughters and sons sudden loss to something like ED. Just a couple weeks ago, the community lost a 23 year old daughter to ED complications, and the family donated to the Alliance for Eating Disorder Awareness. There are not many solid resources for families like ours, so hopefully we will change that. I hope my film does justice to the topic and I am proud of my daughter for sharing such a painful part of her life in order to encourage others to seek help. She is not on the road to recovery personally, but she is supportive to others that she knows and are in recovery.

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Be the water

If you had a choice to be a Rock, or to be Water, which would you choose? What is the strongest?

Dr. Wayne Dyer says: “Water is the softest of all things, yet it is the most powerful. The ocean patiently allows all things to flow into it. It is always flexible.”

I am the Water, not the Rock. The rock is stable, unmoving, the water is a slow- or fast-moving constant, but can cut straight through any rock or any mountain with sheer persistence. I want to embody all the aspects of water in my life, the ability to go with the flow, roll with the punches, accept life when it does not go out as planned.

When I think of an obstacle, I think of ‘Rock’, and know I can overcome whatever is in my way with hard work and intentionally slow, but persistent effort.

I have a daughter caught in a compulsive self-harm cycle that is not slowing down. Mental illness comes in many forms, but most of the time it can be managed with good self-care, good support systems, and a little medication. However, if you have multiple medical issues compounding your underlying issue… the health issue becomes like a rock, that is slowly turning into a mountain… How can I, as mom, be more like water, and allow things to flow one day at a time, and how do I decide which rocks MUST be broken down first, or which rocks we can sail right past.

I am struggling right now because I am willing to move heaven and earth to save my child, but my child is not willing to save herself and it has taken over her life. Eating Disorders are insidious diseases that tear apart families, tear down kids’ self-worth, and involves a repeated cycle of self-abuse that seems to be without end.

With bulimia or anorexia combinations, it is that number… the blessed number on the scale that determines (to her) whether she feels she has the right to live or not. When her number rises, she no longer feels worth living, and has zero interest in recovery thinking, or help from well-meaning professionals. Food in all forms, have become the enemy, but nourishment of the body is also the cure.

I spent my entire life fighting for my life, so I cannot quite relate to a feeling that life is not worth living, but in this case, it is a reality that I must accept if I want to survive day to day with my child. To talk to a child, offer hope, offer support, and realize that nothing you can say or do will alleviate any of the pain she is feeling, because she when she does describe what is happening to her, there are no answers and it seems much less likely we will know how to fix the situation.

She has decided to accept the ED as her life, and we are all supposed to pretend we don’t see the disordered behaviors, or that we do not see her literally ‘vanishing’ before our eyes a little more each day. This is the underlying intent, to vanish, to lose weight so she no longer exists in the body she is currently in. No amount of reason, or logic, or science, or near-death scares, have changed her determination to keep doing what she states is ‘the only thing that gives her happiness in life’. What we know scientifically, these diseases do not stop until the patient dies from their self-inflicted starvation habits.

If ED is the Rock right now, then… yes. Mom will be the water. I will keep doing everything in my power to express my unconditional love and support, even if it frustrates and confuses me every day. It is a hopeless feeling to watch your own child slip away and feel there is nothing you can do to stop it… you can postpone things by checking into hospitals, but the drugs and therapy only masks the symptoms if the client is not willing to get the help is offered. All I can do is hold her and take her to her appointments, and attempt to guide her safely through things.

I pray every day for healing for my family. I wish I could say I had the answers, and that all of my positive affirmations about myself were helpful in this case, but they are not. I just try to focus on the positive and remember that tomorrow is another day to try again.

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I wish

I wish I could say things just keep getting better and better everyday. I cannot always say that, but I can choose to believe it will get better soon.

Not sure how many folks out there have what I like to call alphabet problems? Those that you need acronyms to spell, to keep track, or to mentally stay sane in spite of all the letters flying at you – with the associated behaviours and/or side effects that come along with modern medicine.

It is baffling to see healthcare in action…. “in-action” is more what I am referring to… IF you have a case that belongs on a television show called “House”… those cases do not end up neatly tied in a bow with solutions. Some real life medical cases have a tendency to go through a life… much like a train… a big, long, train.

Each train car is another letter of the alphabet, some cars are full, some are heavy, some even light. Some are unnecessary and can be cut loose… which ones? That is where the medical teams are supposed to come into play.

We are the engineers of our own trains, but we often forget and let others drive. By the way; This will leave a train open to hijackers. Anywho, the healthcare in this country is embarrassingly terrible… if you are sick. Our healthcare system will keep you “alive” but it is up to you to choose to “Live”.

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Pancake in my toaster

Let me first say, yes, I have cooked pancakes in a toaster before, and no, there was no disaster, but NO, I have never completely ignored the fact this particular pancake had chocolate chips and was the thickness of a crepe, and a little floppy… COMMON SENSE should have alerted me to what ‘may happen’ if I placed floppy cake inside of sturdy toaster oven. This is not a wimpy toaster oven, this guy can do bagels, he can do garlic bread, strudels, pop tarts, waffles and frozen pancakes. Anyway… I broke the toaster, and stopped to ponder life. (no men live in this house, so I generally name all the tools and appliances “He” just so ya know).

Many times, I think something is a ‘really great idea ‘and feel it in my gut… like, “this is it! This is the right button to push!” But somewhere deep in my spirit, there is this feeling that likes to remind me of all the ways the idea could not work, so I have a slight “?”at the end of every statement. When you live with every statement being open to interpretation, you leave yourself wide open to be ‘misinterpreted’. To be honest, I am the type of person, you need to see up close ‘to get the full effect of what kind of brain you are dealing with.

Anyway, back to the toaster. Simply slowing down my mind, deciding what I needed to do first, next, and so on would have been what all together adults must do. However, I normally choose to do multiple things at once. So, I had this bright idea to start washing the dishes and dropped this lovely pancake in the toaster not to give it a second thought. All was right in my world, I was listing to my morning meditation tones, doing the good ole brain squeegee of the psyche as I washed insane amounts of dishes; if you must know. Sometimes negativity can fly in my head before I get out of bed, so I have to tackle that mess before my eyes even open or my feet hit the floor. Prayer is probably something I do more than talk (if you can imagine), but it is true. Without it, my mind would never be able to handle the consequences of so many emotionally charged, knee jerk life decisions from my past.

Living with someone who has, or having one myself, an eating disorder can make you look at food differently. Eventually it becomes something you can receive with joy and excitement, but for some, it is a source of pain or a loss of control. Sometimes when we see someone struggling with mental illness, it is easy to make a snap judgement about that person, and place them in a category that you truly feel is the right one… in your gut, but you find out later, whatever you felt in the beginning was right or in some cases ‘not right’ all along, it was just yourself that doubted. To live with the consequences of decisions made that went against my own, is harder than some might realize. Some decisions relate to my health, but some relate to life choices as a whole. Like, now my toaster is broken, because I could not just throw away that pancake, instead of feeling like it would be wasteful, and tossing it in the toaster without thinking…

I am sincerely grateful to be alive for another day to have the chance to figure out what the next move is. I am grateful to be alive another day to love my daughters and my friends and my family. If I can love my children as much as I have been loved by God, I will be ok with that.

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Today was the first year of my youngest daughters sophomore year of high school. The way she walked into that school today made me drop my jaw. This school looks like a manufacturing plant for politicians, 50 shades of Khaki is the uniform the boys wear, and the girls are just like the wives of senators in training… just saying. It could also double as a setting for several horror movies and television shows where the teens have obscene amounts of money and drive cars nicer than the adults. The parents generally look like they definitely are minted, fresh from the box of Ken & Barbie also. I want to get a bumper sticker that says, “My kids have interpersonal skills in the form of balls of steel” not the ones that brag about her honor roll.

I cannot imagine the courage it takes be a teenager in high school in 2019… with social media… I literally… cannot imagine. I watch my children walk places, heads high, regardless of what the situation is, and I am always impressed beyond words. Props to them, props to all my friends kids that are out there surviving, and thriving, against all distractions and hope sometimes.

But seriously, the boys are tan from their ankles to their heads, with natural sun frosting on the tips of the floppy hair that has to be tossed continuously during a conversation. The only kind of tan I imagine you get from being on a boat in the middle of some beautiful ocean where the sun hits you from all angles? I was intimidated driving in the drop-off lane, I can only imagine having a huge backpack on my back, bright red hair – just being adorable, and having to walk into Abercrombie and Fitch High School… not rich shaming, just wishing I had a camera to illustrate what I saw my daughter walk into this morning. I wanted to cheer like she was spiking a football, just for getting out of the car by herself. lol

Thank God, I don’t have to go to high school anymore.

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I feel if more of us thought about our mortality beyond, ‘Am I going to heaven or hell?’ Maybe folks would put down picket signs *metaphorically. What if the world took a hard look at the direction hate is going and stood up at the same time to stop it where they saw it? What if we looked at life as more of a Challenge”, to Life Itself, what if we chose to Exist and to Matter Positively, regardless of whether we belong to a fundamentalist group of some kind or not? Just a thought. Living life for me since myeloma, has been more of a Dare that I intend on beating the odds.

If we looked at death as a finish line in some life race, we would spend all of our time looking forward or trying to elbow or outpace the people next to us, racing exactly the same direction. There is no time to hesitate once the gun sounds and you are running, you just go… What if we lagged behind to make sure the end of the road is in the same direction your heart intends to go… not just the direction of the road paved before you. Anyway, my brain tangents.

I finished a book recently, Conversations With God, by Neil Walsh. The book was written during the same year as my spiritual awakening or revival in 1994. This book reads like my personal journals, so I thought it would be easy to read, and it was. Anyway, if you have an open mind and heart, you can glean much knowledge from reading books by philosophers and spiritual leaders, but you ultimately have to trust your heart and your mind and your faith in something *in my experience – without faith in something greater – life is possible, but significantly more hellish in nature*

I have never been able to quantify the God that I know, or that has guided me my entire life. These types of books are encouraging to people like me that feel they have had these conversations for years, but thought it was merely chemo or mental illness.

Back to death, I have been in the room with at least 30 dead people at one time, and with humans on their way out, or had ‘just left’. It is my personal experience that a body with a soul and a body without a soul are completely different, therefore, I find some strange peace in knowing that at the time of departure, a soul is no longer connected to the body. When a body leaves the earth, it endures much trauma, and is sometimes like the trauma of a childbirth. The knowledge that I will not be connected to my body gives me peace, but I also have peace in the knowledge that whomever we Love that we lose, never truly leaves us. I believe they are connected to every thing and person they have ever touched and they will remain as present as your mind allows them to be.

There is something comforting in the neuroscience of the brain, as it relates to memory… When we clear out the old, we make room for the best memories of those we love, so when we lose them, we do not feel the loss as deeply because – if you are open to it, there is comfort in allowing faith in something to wrap their loving arms around you to remind you that you are never alone.