Cone of Silence

The Cone of Silence. That is what I call the vacuum you create when you tell people about some awful situation in your life. I learned about the Cone of Silence when I was fairly young. 

The summer of 1978 I boarded a bus for Camp St. Michaels just as I had the summer before. Anticipation and dread filled me in about equal measure. I wanted to make new friends, but was used to being bullied at school. I knew there would be oatmeal and hot dogs to avoid. I didn’t want to be sentenced once again to dish washing for burying my food under the picnic table. But I also loved sleeping outside, under the canopy of the evergreen branches, the stars peeking through between the pine needles. I enjoyed the daily hikes through the woods. I learned to look forward to mail call, hoping to see my dad’s horrible doctor handwriting on the front of a postcard addressed to me.

We were all at Mass, sitting on log benches arranged in a crude amphitheater facing the folding table altar. The priest (yes, he turned out to be one of those priests, but more on that later) had yet to arrive. We all were whispering and joking around when our counselor tapped me on the shoulder. Father needs to talk to you.

I don’t remember everything that followed very well. Impressions. The door opening to the office. Father in his vestments sitting on a chair, gesturing to a man and a woman standing there, peculiar expressions on their faces. His kindness as he told me they were there to take me home. My dad had died. I was twelve years old.

The man and woman were the Thatchers, friends of my parents. I had been introduced to them but I did not ever recall having a conversation. In silence I went with my counselor, who had laughed and teased just thirty minutes before, to gather my belongings. I think I said good bye to my new friends. I may just be imagining so. I have a picture in my mind of their being told why I was leaving early. They look confused, and just nod when told to say good bye.

The counselor hugs me awkwardly when we get to the strangers car. I am hurt and angry that strangers have come to drive me the three hours home. I slide into the back seat. Mrs. Thatcher, in front with her husband, turns and says how sorry they are. We drive in silence.

I look calm (ish) on the outisde. Inside my brain there is a chubby middle aged woman running in circles, yanking out her hair and screaming at the top of her lungs. Outside:silence. Inside: !!!!!!!!!!!!!!!  My prayers are reduced to a single word. Help. I have been told that I am tough. I am not tough. I am simply a damn fine actress. Offer me the part of mom with dying son soon to lose his health insurance and I will give you a heart breaker of a performance. This is where I suppose I should say something uplifting and brave. Fuck that. Amend performance to pissed off mother of dying child soon to lose health insurance. Now I believe I shall go punch something. Toodles!

Dialysis paralysis

I feel like if I sneeze too hard I will shatter into a million pieces. The last couple of months have been filled with tests. Recently we learned that my husband does not have pkd. The kidney specialist said our sons case may even be spontaneous. We were stunned. Everyone along the way had assured us that the disease is hereditary. A radiology tech had even implied my husband should demand a paternity test when his kidneys were not enlarged and he told her that mine aren’t  either. Amid the relief of learning the man I love isn’t about to die we learned that the wait for dialysis is six months in the area where my son lives. Six months! There is a very real chance he will die before treatment can even be started. So we pray, and wait, and scheme; looking for some way to help him and his family. His five year old wants to know why daddy is so sick. His daddy doesn’t know what to say. What can you say? What won’t terrify a child who loves his dad and can’t waitto see him every day? What could anyone have told me if we had known my dad’s heart was due to explode one fourth of July? I just don’t know, and the not knowing is so incredibly hard.

Big Girl Panties

This last week or so has been so busy. I’m exhausted. I haven’t been able to order my thoughts enough to write anything. Considering how upset I’ve been that’s probably a good thing. I realized yesterday it’s time for my big girl panties. So I’ve never had a dying child before. Or a more slowly dying spouse. Or a possibly sick younger child. So this is new territory. We’ll figure this shit out. Probably not before the process beats the shit out of us. Another parent of a very I’ll child told me this will forever change who I am. I hope it’s for the better.

Bleak and Depressing, or, A House on the Street where I grew up

I’ve been trying to drag myself up out of the depths of gloom the last few days. Bleak and depressing is not the place where I usally live. In my minds eye, bleak and depressing is the ramshackle house that was on the street where I grew up. When I was very young, this was the house where the scary Halloween recording greeted you as you came up the brick walk and climbed the wooden stairs to the massive front door. There was a pond to the left of the front deck, rectangular and lined with moss smudged red bricks. There were red and gold and white fish in that pond, and I would stare in fascination into the dark water, hoping to catch a glimpse of them as they darted out from the overhanging edges in search of food. But then the judge who lived there with his wife hired a new secretary and became a cliche. His wife kept the house in the divorce, amd also fell victim to a stereotype of sorts. In a small town where every one knew one another, she couldn’t bear the shame of her husband’s betrayal. She became a recluse, drinking scotch in her kitchen from morning to dusk, spitting into a shot glass kept conveniently nearby. Slowly the large yard was overtaken by brambles and shrubs. The fish disappeared from the pond. The only creepy soundtrack was the ptooy and splash of saliva hitting glass and the scrape of chair legs on wooden floors as the lady of the house sat to pour more whiskey.She used to hire me to work for her, for one dollar and sixty cents an hour. To this day, the tasks I completed while in her employ embody despair for me. I painstakingly licked stamps to fill out sweepstakes entries by the hundreds. I polished copper pans that were never used because she never had guests. At Christmas time I would haul out cartons of carefully folded Christmas wrap saved from gifts received in years gone by. I brought out bags of Christmas cards and slightly crushed bows. I sorted through box tops and bottoms to find two that sort of fit together. Into a box went a wooden spoon, into another, a pair of white knee socks. Each box was laid out on pieces of gift wrap until the right size was found. I would sift through bows and ribbon. Finally I would hold cards up next to the wrapped gift until the arrangement pleased me. Only then would I cut the back off the card to make a large gift tag, write a note from mother to child and attach the card.  I wonder if she was ever surprised to hear she loved her children very much. That’s what the cards said anyway. I never saw her children visit the home on our street. I wrapped the same gifts for them the following year. For all I know they were the same pair of socks, the same wooden spoon. The same wrapping paper. I know her children were real. I asked my mother. But Mrs. Golden, the sad, silent lady in the Halloween house, faded away more and more as time went by. Years later, home visiting from college, I was surprised to hear she still lived in that house. I found myself trying to catch a glimpse of her. She was as illusory as those red and white and golden fish I once strained to see.

Concrete is not my friend

Concrete is not my friend. Nor yours, either, if you happen to be possessed of pain receptors. My sincere advice: don’t forget to carefully inspect every area recently vacated by hungry children. Smashed orange +concrete floors+inattention=ouch! This is the reward for allowing students to eat lunch in your classroom. Hobbling off, now. Exit stage left.

My Kingdom for a Doctor

A few years back I tried to find a doctor for my oldest. This was around the time his health began to noticeably  decline. I spoke with 53 doctors offices. Two were accepting new patients. I felt extremely frustrated, certain this was what happened when the patient was on a state sponsored healthcare plan. Lack of accessibility. Substandard care. Indifferent providers. If only he had private insurance, or a ppo instead of an hmo. I really should have known better. I do now.

We moved an hour away from the town where our boys grew up. We’ve been here for two years now. I never had any interest in living in this part of the wine country. People hear about where we live and go ooooh. They refuse to believe me when I insist that, unless you have buckets of money, this grapevine covered valley is still just a working class neighborhood. We moved for the instant job promotion that was dangled before us. Move and receive a bigger raise than we ever dreamt of seeing during our years in the military and in law enforcement. Sure, we could never stay here after retirement. Too expensive. Our options for retiring somewhere relatively safe and comfortable would be dramatically improved though.The biggest drawback that I could see would be finding new doctors.

In 2011, after ten years of exhausting, humiliating tests and being shunted from one specialist to another like a hot potato I finally received an accurate diagnosis. Permanent nerve damage to the nerves that control my lower body, permanent nerve damage to the nerves in my right shoulder and arm. Chronic pain, neuropathy, muscle spasms that are kept mostly under control with medication. Eventual need of spinal fusion and possible need for breast reduction to reduce strain. No promise of reduction of pain, but hopefully retention of the ability to walk. A great part of why a correct diagnosis took so long was the massive push to an hmo system of healthcare. No one wanted to deal with the many many hoops required to obtain permission for an mri. As one provider after another dropped our insurance plan, I started over with another provider and another and another. Until I was so miserable I threatened to become an alcoholic or iv drug user or lose my Frickin mind. That’s when I got an mri. Yay!

The attitude of my then-physician underwent a sea change. For a short while. No more useless muscle relaxants that, according to the spinal surgeon “does nothing for your condition.” No more treating me like a Drug seeking whacko. Again, for a short while. The problem is that pain is not visible to a nurse or a doctor. No one persons pain is like anothers, not really.Sciatica, while the proper term for what I have, does not properly convey degree of damage or intensity of symptoms. Neuropathy can be described, but understood only if one experiences the condition, and then only partially. My then doctor has sciatica. For whatever reason, he decided my sciatica is his sciatica. He has other chronic pain patients. He gave me a ranking, deciding my pain is real but nothing debilitating, disregarding the report from the orthopedic surgeon. We won’t even discuss the neuropathy. So when I explained that the meds he gave me helped a little but still left me unable to truly function, he ignored me. Even though I was not exceeding my pain pill dosage, he made snark comments about my concerns about my increasing pain level-to my son. At my youngest  son’s appointment. Where I was not present. Upsetting my son to the point he refused to go back.

One day, unable to even get out of bed lest the spasms leave me in a heap on the floor again, I called for yet another appointment with my then doctor. He was out for the week, but I could see his partner. The next day I got a ride and went in for my appointment. This time, the doctor listened, reviewed my history, announced that he saw no reason not to increase my dosages to see how it went, and sent me home with new prescriptions. We eventually found a level that alleviates the worst of the problems, allowing me to actually live rather than just existing. I didn’t want to give him up. Moving could be a problem. Did I really want to start all over again? No. Would it be worth the two hour round trip to keep seeing him? Working for me so far!

Bob didn’t want to make the drive. We had made the switch to a basic ppo with the change of jobs. I assumed finding an internal medicine doctor and a nephrologist  here in our new city would be as simple as visiting the insurance company website and making a couple of calls. Two hundred internal medicine doctors popped up. Not a single one of them are located in our area. Turns out the husband will be making that two hour trip. I just hope that, by the time he needs dialysis, we’ll have either moved again or a new doctor will ride into  town.

Some Rhino

I’ve never been a blogger. I have reread my posts, wondering what in the world I think I am doing. Finally losing my mind? I have spent so much of my life hiding. I get up in the mornings, don my armor and then look for excuses to stay in the house. I don’t even go outside to walk anymore, now that the dr has discouraged me from running. I walk on the treadmill, at home, so I don’t have to explain that no, I am not in need of an ambulance. I have rosacea. I am not having a heart attack. The only people I interact with other than Bob are my students when I sub and the kind ladies at our local Whole Foods grocery. I don’t know anyone here. I guess that’s not entirely true. The pharmacists know me. I have permanent nerve damage from a car accident years ago. It’s relevant to the purpose of this blog because my partial disability  complicates how we move forward. If there is a chance my upcoming back surgery and breast reduction surgeries could compromise my potential for being a kidney donor I will not have the surgeries. If there is a chance I could be worse afterwards or that I could die during the surgeries then I will not have them. Because I need to be here for my sons, for my husband, for my grandkids and for thier mom. Before, the surgeries made sense. Now, not so much.

We will fight about that, Bob and I. He worries about me. He kept his concerns about his own health from me; thinking his new pain and the other symptoms were nothing compared to mine. Just part of getting older, that was all. We’ve never been this old before, so what did he know? He’s such a twit sometimes. My twit. We try to out – stoic each other so much the lengths we will go to hide our pain and fear from one another is ridiculous.

We talked about our tough guy routines,as we made our way home yesterday. There will be times we both want to rage. There will be times when we cry. We are both depressed at the moment, we know the signs. There will be times we need quiet and times for loud distraction. We know each others tells, we are good at calling the other persons bluff. Thirty five years gives you insight into your loved ones personality.

Promise me you won’t withdraw, he demands. Promise me you won’t punish yourself for something that isn’t your fault, I counter. We agree to try.

He sees me typing; asks if this blogging thing helps. If I share it with my therapist, with family, with the world. I tell him, I don’t know. He asks me what I call this outpouring, this blog. I show him. He makes that funny, twisty smile of his, and nods.

You are my Sunshine

My son wants reassuring.  He needs answers from me that I cannot give. I want to lie to my son and tell him that everything will be alright.  I want to gather him onto my lap and rock him like I rocked him when he was little and afraid. Sing Jesus Loves Me and You are my Sunshine, my cheek pressed against the softness of his baby fine blonde hair. I want to shriek and scream and tear out my own hair, and kick and wail and stomp my feet. I want to climb onto his lap and feel his arms close gently around me as he whispers that it will be alright, giving me permission to let go when my own time comes. That was my plan, my get out of the convalescent home free card. I would love my children and their families with all my being, and in return they would keep me safe from the perils of minimum wage old people caretakers. This was our joke, our half serious promise to one another. I changed their diapers,  they would change mine. They would see me through old age if my husband died before me. In return I would let them rob me blind.  We had a verbal contract.

I know there are no guarantees in life. Perhaps we will get yet another miracle and my child will live to see his own children grow. Perhaps. My therapist says my tendency to expect and prepare for the worst is part of my anxiety disorder. I may expect the worst, but I do hope for the best. That hope is often what gets me out of bed in the morning.

A Big Man, Crying

My husband is, in many ways, very oldschool. Raised primarily by his grandparents, he learned responsibility from a crusty old Marine. In their world the man’s job is to protect. To shield from harm the people you love. He can’t keep us safe from this threat. He can’t smash his way through with brute force , or finesse it with his tremendous intellect. He is going to die. His body has become a stranger to him.

He is an athlete. He played football and tennis in high school, then went on to be a soldier. He served with the 3rd Ranger Battalion, was a patrol leader on the DMZ, and finished his eight years of honorable service with a tour as a recruiter. He left the service with a wife and two small miracles, our boys. He planned to become a History teacher but instead went into law enforcement when Humboldt State rejected a years worth of credits and left us scrambling. He won a grant and attended the police academy while we survived on $806 a month. Law enforcement surprised him. His belief in our obligation to look out for those weaker than ourselves combined with his military training and intelligence together made him an outstanding peace officer. Plus he got to take care of his family in a manner he never could have afforded as a career soldier. Until he tried to stop a man from killing himself.

The department received a check the welfare request concerning a man whose family life was falling apart. Bob was on duty and spotted the man’s truck parked at the edge of a large commercial lot. As he approached the vehicle he and the driver made eye contact in the driver’s side mirror. The man’s hands seemed to be moving frantically, and a car seat could be seen on the rear bench. There was a spark, and the truck exploded. My husband was blown backward, his boots, radio, and other equipment torn from his body and scattered on the pavement. Ears ringing, he staggered to his feet and tried to get into the truck, searching for the car seat. He was dragged clear. Several hours would go by before he would learn that no child had been in the vehicle. Over a decade later his ears have yet to stop ringing.

Bob has been medically retired for some time now.You aren’t safe out on the streets if you can’t hear. He mourned the loss of his job and his hearing for a long time. He hated feeling like he could no longer serve his community in a meaningful way. He found another job and began to look forward to enjoying the rewards of decades of hard work. That’s when the diagnosis came. For our oldest son. Our first miracle child.

First, a month ago.  The doctor says I have Polycystic Kidney Disease. Our twenty eight year old son had been sick for years, but with no real idea of what was going on. A small stroke, a possible heart attack, high blood pressure, memory issues, weakness, drastic weight gains and losses. Chronic pain.More tests. Bob and I googling, asking doctors questions, talking to relatives. Discovering that my husband also has PKD. Hearing the words “inherited”. Untreatable. Incurable. Chronically progressive. Life-threatening. Painful. Fatal without transplant. Low success rates with transplant. Hearing them ringing in our ears.

We decided to take the Thanksgiving holiday, get away, try to breathe. We left for Monterey on Sunday. On Monday we began to cry. On Monday we heard the words “extremely advanced.” Our child was being told to start dialysis. Our child was being added to the registry for people needing a transplant. Our son who is a father of three. Our son whose children have a fifty percent chance of having inherited this disease. We will be crying an ocean of tears before this is over.