Transition

Who would have thought that transitioning back to home after a long hospital stay would be an adventure? Not me. I figured it would be like any other time I had spent away from home, a natural, instinctual rhythm. Nah. Something changes in your brain when you experience "living" in a hospital. Day in and out of traversing strangers that seem to multiply or change "shifts" just when you develop a pattern causes a structuring level in your brain kind of like being a stocker in a grocery store. You are putting the same product up but different faces surround you tugging at your attention to answer questions, meet demands, or simply flutter around you poking at your private space. Private space. That's a good one. I can't tell you how many people have now seen me naked. Door knocking or checking before entering is not a thing. I was reminded as I was consulting with a supervising nurse that my concerns were legitimate as I relayed how people just barged in or duties were left undone. She stated matter of fact that our room was now our home and that anyone entering should be as respectful as if they were in my home. They should pick up after themselves, clean up the toilet area and speak with respect as they addressed us. Don't get me wrong, most of the people did most of these things at least some of the time, but some made our stay incredibly challenging. I say this to help my brain process the quirky adaption that is happening today as I am in my  6th day of home experience. The first day, I woke in my own bed, got up to go to my own bathroom and froze midway, fear piercing my heart because I didn't know where my mask was. In the hospital, I only went without the mask when I slept or showered. It was surreal and a bit terrifying to get up and walk to the bathroom without my face being covered. Of course, I joked about this later but the feelings like this are daily. Getting up to take care of me is not my main focus. I wake to clean every surface before my Bear wakes and touches anything. I need to make sure his area is ready for his day to begin. Alarms are going off regularly to ensure that meds are taken on time, and food gets administered to aid in the healing that miraculously is happening so much faster without the tubes, IV trolley, or "sterile" smelling environment. I started to depend on these strangers for the much needed direction and care, thinking that they knew best and the hospital was the best place for my love to heal. That is partly true. These experts were giving the care that only they knew how to administer and the hospital setting was necessary for a time to get the scaffolding in place for when we left the nest. It really does feel like taking a dive out of a nest. You doubt that you will know what to do, or how to do it correctly. You even worry that the house you feel the safest will be a danger. Then you come home and you watch your patient start to flourish. They are sleeping through the night, eating food that comforts, and feeling the souls of the family they have missed wrapping them in the spirit that only home can offer. They are back in fertile soil, and their bodies recognize where they grow best. My mind has often wondered if this is what it will be like when we pass through the veil and return to our heavenly home. Will I fall into the over stuffed couches and feel my shoulders release the burdens from my long stay away? Will I smell the familiar scents of foods I love and surroundings that give me peace? Will my recognition of those beautiful souls I've been waiting to embrace clear my troubled mind and fill my heart with the much needed love and support? I say yes. I know the answer is yes. I'm grateful that Josh and I have created a home that emits the love that our family needs and thrives off. I love that people who cross our threshold tell us they feel an inviting and warm spirit in our home. We do too. I'm confident this will be what I feel when I return to my maker. This warm invitation will be the same. Going home to the soft place I can land, the protection from the world, the peace of love and wholeness. No fear, no anxiety just the place I know. The place I flourish. The heaven I call home. 

Both of me

  She looked straight in my eyes with tears pooling. My words were clear but unaffected. "Why?" "What is troubling your heart and mind that you must flush those emotions through tears and pain?" "What fears lurk behind the strong teeth you bare?" "Where did you go?" "Who are you?"  I peered in the mirror, searching for the woman I know, desperate to recognize the face I can't place. There are two voices in my head. One is clear and controlled. She always sees through the chaos to lead us to the safe path. She knows just what to say and how to calm our mind and heart. She is the lion, the leader, the fierce voice that brings the much needed perspective. She is power. The other is tender and kind. It is she who caresses and holds. She feels and sometimes that pierces us deep. She cries. Oh how she cries and racks the frame we abide. She makes the human in us. She keeps us soft enough to see others and love them, sometimes too deeply. She has been crying and crying, so I ask. Where are you? What are you doing? WHY ARE YOU CRYING????? Calm steps in and grabs the insides. What are you afraid of? He is here. He will always be here. He is not going anywhere. There is enough around you. There are so many around you giving you all the love and support you need. He is tired. He is sick, but that won't last. PULL YOURSELF TOGETHER!!!! You are going to make it. You are OK! Things could be worse. Head up. You have this. You will come out on the other side...victorious. You will. My heart slows down. My breathing evens and the tears....the tears dry. They dry and I can breathe again. I can breathe again....for now.

Mia (my dear)

 There are many things I have noticed as a woman in the world. It's been a rooted understanding that women are dangerous. When I say that out loud I realize that I have many wonderful, supportive and kind women who do not fit into this statement. I acknowledge that there are people in general who can be categorized as dangerous. It's an instinctual statement that comes from a deep place that automatically feels this. Where is this simmering in my conscious? It might have been planted when little girls ran away instead of played. It might be the later prepubescents that snidely commented on my clothes, or maybe the teenage wanna-be's that hated my boyish confidence. All I know is that I grew up being treated like a she-boy. I learned to cook, clean and take care of littles like a good Iranian woman, but chopped wood, cleared corn, and was taught to beat the boys in my karate class. I do tend toward masculinity in some physical aspects and certainly in my train of thought. It did not serve me well with the "secret-telling", whispering girls who played mental games. I noticed the boys were more straight forward like me. The boys didn't play head games and the boys were easier to befriend as long as I didn't best them in a fight. That was hard not to do. I did eventually find girls like me. They exist. A little rough around the edges and different, odd, eccentric. Straight-shooters. They became my trusted, lifelong confidants. 

From these experiences, I learned that when  girl looks you up and down she is either instantly hating you or friendly with the intent to hate. It will come later when she has devised a plan. The only people I knew I could trust besides my rag-tag gang of "misfit" girls was my grandmas. I was blessed to have both of my grandmas through my youth. Oddly, these woman both adored me. Grandma Tryfonas spent most everyday with me. I shared her love of music and the ability to play and sing. I also had her fiery temper. She was my fiercest ally and my biggest fan. Every concert, pageant, talent show, she was there, her face shining with pride. She let me be me and I loved her. My Grandma Tizpa only knew me for a short time before we fled Iran. I was 4 and she was miles across the ocean. Still, I was her favorite. She told me and everyone else as well. She loved me unconditionally. She loved me in spite of the miles between and she loved me for me. 

There is a little sniff of a woman who cleans my Bears room. She is the same size and color as my grandma. She has the same twinkle in her eye. She calls me "mia" and speaks to me in her broken English. There are many women around me. Some are friendly while others simply do their job. Some don't like me even though we have never spoke , but Ruska sees me. She remembers me. She sees me. She loves me. In a world where so much pain, fear, uncertainty, and unkindness abides, she sees me. I believe our ancestors watch over us. I believe they are our guardian angels. This little sniff of a woman who reminds me of my grandma was sent for me. In this difficult time, she was sent for me. How grateful I am.

Small and simple things

 The days have been catching up with me and I find the compounding effect stifling. I can't say that I am unhappy as that is not my nature. I feel happiness inside as a constant current. Still, I am not immune to the piling up of emotional garbage, and as such need to vent that out of my system. Sitting here day after day, listening to the myriad of information and fighting to get the beds made, urinals emptied, I started to slide into the critical eye.

 I hate the critical eye. 

It is what makes us only see the dingy edges, the dusty surfaces, the food in teeth. It stops us from smelling the fresh linens, seeing the twinkling mischief, tasting the cold milk. The critical eye is the real disease that no one has noticed has taken over our social networks, media airways and infiltrated our most private places. It is the slippery slope that has created the havoc we see out in our streets and feel in our hearts. I do all I know to do to keep my eye clear of criticism so I can see the joy around me. It is a conscious effort and requires improvement each day. Lately that effort has been like pushing the 10 ton boulder up a jagged ledge. Last night was a turn that allowed me to step aside and let that boulder bully its way back down the incline. Natalie is her name. She is one of the many CNA's that attend my Bear. Natalie has spent countless hours attending to Josh's needs physically, but one night she came in, took a seat on the couch and chatted about nothing. We laughed, made fun, and told stories that connected us immediately. Her dark, piercing eyes show excitement and instant love. I met her at the ice machine one night as I had just finished up a final I was hoping to avoid. It was nearing midnight and my eyes were closing in exhaustion. "How are you doing?" she asked. "Well, I had to take a final that the teacher wouldn't let go, even though I have a 99% in her class. Chemo wasn't a good enough excuse", I riley smiled. "It's done and I'm wiping it from memory." She smiled and commiserated with me for a bit, making me feel her absolute attention. I don't even remember everything we spoke about, just that she was listening like I was the last human. Last night as the food was brought in I noticed another box of Swiss Rolls. I say another because I had already purchased my love a box, and he had also secretly asked for a box from our friend bringing our laundry exchange which yielded him 4. At seeing this new box I wondered if they were starting to bleed out of the walls. We quickly realized that it was Natalie. She came in to take vitals and we asked. "Yes, it was me. I knew you liked them and was shopping so I grabbed a box." It's the small and simple things. We have been shown so much love by those who know us and for that we are grateful, but we expect the people we love to love us. It's the surprises from the "working staff" that prick our hearts and make my eyes leak. It's that amazing humanity that you see unexpectedly from those that have the "mother's heart". Thank you Natalie. Thank you for seeing us. Thank you for remembering we are human. Thank you for your tender care. We needed you.

DAY 21

 Day 21, East 8, Leukemia floor. Slight knock at the door; they come in whether you say to or not. Why do they bother knocking? It's a ridiculous formality. I had to look at the calendar to confirm how many days we have actually been here. I remember going home once because the house was empty Christmas Day. I walked in to a disaster, but I was determined to get a shower, grab clothes and head back up. My mind worked to compartmentalize the mess so I could leave sooner but to no avail. Cleaning was automatic and maybe a magnetic pull to give me just a little more time away. 21 days of surreal. Testing, diagnosis, chemo, mucositis, pain, sleeplessness. Sleeplessness. If the villain's of the world want to conquer, simply enact tactics to prevent sleep. Lull your prey into deprivation psychosis. Very effective. I am not sure that I have completely processed this turn of events. I know this will pass. I know we are getting the best care. I know this will be a chapter in our lives. It's just dreamlike to wake each day in a pull out couch, walk down the hall, passed the nurses station, down the next hall to use the potty, disheveled and groggy from so many visits in the night, masked and exposed. "It's temporary", I tell myself, but the long walk down the hall stretches each day. Irrational thoughts creep in; "Did I say good morning?" "Was I polite?" "Do I have a bra on?" Waking in my own bed, I roll out, schlep to my own toilet, not a care in the world. I consider myself lucky when watching my sweetheart work the other end. He spent the first weeks in underwear, arms welted in bruises from unsuccessful IV's, PICC line trials, Central line insertions. The lining of his GI tract raw from puss and sores accompanying the chemo. Joyous bathroom time that leads to uncontrolled chills and exhaustion. Who would have thought dumping a load would require a 2 hour nap? Sleep. Such a precious commodity. "He needs more sleep. Isn't there a way we can combine visits to cut down on interruptions?", my voice a broken record to each shift change. Someone finally heard us and banned night checks, but the vultures hungrily pace outside the door for the first streaks of morning, then barge in to check the list off. I wonder when the human becomes a list? When does the life they are trying to save become the paper trail of meds, checks, blood draws, weigh ins, poking, prodding, torturing....I know but it's true. It's torture with a smile and kind little words that I want to shove down their throats. It sounds so ungracious and I acknowledge that, but I only see the humanity in a few clear brows. You have to look straight in to see it. They don't all have it. They just don't. Like teaching, nurses should definitely go into their field with a mother's heart. If you don't have it, please don't enter the field. We will all fall vulnerable to the ravages of disease and you my friends are the face we search for the trace of our mothers heart. Make sure it is there. There is a bright spot, I think. I can't be sure because with each entrance into the next realm there is a list of "what this looks like". We are on a long term plan. There will be at least a year of "treatment", but that "treatment" looks like a lot of different scenarios all involving chemo. He has responded marvelously to the chemo and the ground is "scorched". We are very happy about this as we were thinking there would a shorter stay and follow ups. There will be a transplant and then more chemo. Everyone seems to be unsure of what the schedule will be and there are always tests we are waiting on. They don't have a clear path set and I am just needing a clear path. Why can't this have a clear path? It's a clear disease. I want to celebrate the win on the trail of many battles. I am inside, but there is this need to get a clearer picture. Maybe that won't happen or maybe it will. The murkiness is grating. In my mind, I am practicing envisioning what we will be doing in a year. We are on a mountain, the sun on our faces. He is smiling down at me as it was a difficult climb, but so wonderful to feel our muscles working the ground, drawing us closer to the top. Looking over the clear horizon, I see unending light. We are alive and we have conquered. The focus is becoming razor sharp and I know it will be. The focus is becoming razor sharp... 

I know you God

I want to express my gratitude. Life is a very complex journey that twists and turns, stop and starts, grinds and sails. I have been so privileged to be blessed with a knowledge that God loves me. He holds me in the palm of His hand when I am broken and bruised. He leads me through the fire that singes my skin and gently soothes the blistering wounds with His matchless power. I've experienced lows and highs while continuing to feel His warm hand at my back still. He never leaves me in the aching pain. He is there in the triumphant victory, but mostly He is my constant strength and the one I lean on completely. He is the Rock of my salvation, and His love shines through my every fiber. My needs are always met. He delights me with the beauties and blessings all around. I fall short and He lifts me. I forget and He inspires. My goal is to see the blessings from great to small each day that maybe I can begin to show my gratitude for the amazing life He has given me. I am overwhelmed that there is so much good that has been specifically tailored for one such as I. I love you Heavenly Father.
 I just love you.

To you Chris Rock

I recently read an interview of Chris Rock where he stated he not only blamed the "whites" for slavery but felt that current "whites" should bare the blame for what their "fathers" did. He wanted to know how "whites" felt about Ferguson because he already knew what black people thought. He was very interested to know what "whites" thought about an 18 yr. old "boy" being shot down by a "white" policeman.

Well let's address his first request about taking the blame for the "fathers" actions. Which white people are you referring Mr. Rock? This country has white people from Asia, The Middle East, Australia, Europe, and Canada. How will we divide them into the slave owners and the people who fought slavery from it's inception? What method do you advise I use to separate the white people who participated and the white people who fought to abolish from the beginning, or better yet never participated? What about the mixed white and black (which by the way due to the marvels of modern technology we are finding more "white" people in this country are of African decent)?
 Once we have established which group was guilty then we must decide who sold these slaves. So I will invite you to put your finger on a map and play connect the dots. From the east coast of the United States you will draw fingers to France, England, Portugal, Spain, Australia, and a few more nations who participated in this hideous crime but I will left one out! Even though these nations were active participants they could NEVER have been so successful without the FULL cooperation of the very country that sold it's own citizens......AFRICA! So in our investigation we are now obligated to divide the "black" people in this country into the sellers of slaves and the slaves themselves. I'm sure there will be some cross over as genealogy will easily prove connections between the two groups. Hmmm...this is getting kind of murky. I'm don't think there is a definitive way to categorize for optimal blame. There are just too many variables and the data has too many amalgams of individuals who would not only hold blame but require recompense as well. We should move on.

How do "whites" feel about Ferguson? I would pose that "Americans" both white and black have varying degrees of response, but most viewing the evidence would stop referring to Michael Brown as a "boy" due to the fact that at 6'4" and 280lbs he can no longer qualify as a "boy".  They (both black and white) would recall that Mr. Brown (due to the irrefutable evidence) robbed a convenience store and then proceeded to walk through traffic causing a hold up with the vehicles on the street. This brought him to the attention of the police man in the vicinity, Officer Wilson. After telling the men to get out of the road an altercation ensued where Mr. Brown attacked the officer through the window of his police cruiser. After getting shot once he fled, but then decided to turn around and attack the pursuing officer who did not fire again until Brown began his second assault. Well Mr. Rock I believe that every American with an active brain would wait to hear the evidence before jumping to riot level anger. A riot that I might add only hurt the very residents of the area. Kind of like shooting yourself in the foot don't you think? Then once evidence is presented every American would have to conclude that the behemoth man (not boy) attacked a police officer not once but twice and was shot accordingly just like any "white" behemoth man in the same situation would have and has been shot. This information is available to the public via the Associated Press Within the time frame of Ferguson there have been 4 shootings of a similar nature in my neck of the woods that I'm aware involving "white" people. No riots but certainly shooting of people who weren't even attacking the officers on the scene. I would hope that in light of the facts Americans would draw the conclusion that although tragic this occurred because Michael Brown broke the law by attacking a police officer.
All of this is well and fine except who bares the responsibility of continuing the racism, of inciting people to become angry based on inaccurate information, of other Americans (who happen to be police officers) being targeted and harmed? I will conclude that it is people like you Mr. Rock. The death of one human is tragic but the unnecessary deaths of thousands more due to irresponsible conjecture is obscene.
Make no mistake racism will always be present in every society as there is a competitive human need to dominate someone and that is accomplished by demeaning the focus group for whatever can be utilized (color of skin, culture, religion, money or lack there of) but you can't obliterate evil. It exists along side good. However, it is our responsibility to keep evil to a minimum. It is our responsibility as a progressive society to stand up and fight evil together. I ask you Mr. Rock, by placing blame and calling for more division through the kinds of comments you make are you fighting the evil? Are you forging bonds between Americans or are you insisting on the division of race to ensure racism? I know that you have achieved immense success in your life and maybe in your mind you would site struggles and obstacles that you overcame to gain this success. I would ask that view all the "white" people who will never achieve your success regardless of their "whiteness". This would lead me to the conclusion that regardless of your race here in America we will all have challenges that we will have to overcome to achieve. We will all have to work and fight through the stumbling blocks to make our way. We are to a point in this country where we need to decide if we want to encourage progression or wallow in the mire of blame. Blame has no productive outcome. It simply stagnates the carrier. I would ask that someone of your status stop contributing to the cesspool of negativism that is stunting our country and preventing progress. It was not people like you who made advances in the fight for Human Rights. Martin Luther King Jr. was not of your ilk. You belong to the Black Panther group that is seen as destructive and regressive. I would ask that you join with those who actually made a difference for the good instead of cancelling out good intentions with poisonous negativity. I would hope that you would feel a responsibility to cultivate progression in the very country that gave you such a lavish life. The same country who bares the stain of slavery. People look to you and when you spew hatred it inspires hatred. It inspires riots and destruction of the very people you claim to want recompense as well as all the people who live along side. So in essence you have a choice whether to build or tear down. I hope you make the right choice as lives depend on it. It's about time that people, all people start collectively taking responsibility for what they say.