I love this time of year. Our garden is looking great. Mystery flowers are emerging - perennials that we must have purchased last year that have taken root and returning four times as big. I have to trust that I made sure whatever it is was planted in the right place and that whatever it is will play well with the other flowers. My favorite plants are Hostas. I tend toward shade gardening, yet our house receives full sun in the two biggest beds. I have come to enjoy the robust perennials in these beds. It is a world of Sedums, Lilies, Weigela, and the Crocosmia called Lucifer with long bright red blossoms.
Our backyard is fenced so our two bunnies, Abby Blueberry and Honey Bun, can run around the yard. It is wonderful to watch them run around, whisky frisky. It is not so nice to see them eat my plants. And of course, they love Hostas and Sedums. The Autumn Joy Sedum has been eaten to the ground twice already this season. We are contemplating building rabbit proof fencing in front of the garden areas. Until then every plant has been pruned from below, all at the height that bunnies can reach on their hind legs. There is one plant they will not touch. Two years ago I purchased a 4 inch pot of Comfrey for my herbal first aid kit. The woman at the market looked me in the eye and said, “do you know what this is”? I explained I had grown Comfrey before. She did eventually sell it to me with the strict understanding that it takes over everything. She must have had a very bad Comfrey experience. We use enough of it to keep it at bay, but it apparently is not a delicious treat to our bunnies like the Heavenly Bamboo, which they love.
Our huge Double-Flower Cherry has already bloomed and lost all the flowers early this year due to inclement weather. Microbursts rolled through the neighborhood like a bad biker gang, pulling down powerlines, ripping huge trees up with the roots and damaging houses. What defense could our sweet Cherry offer? Thank goodness my weather intuition was correct so we planned the annual “Queen of the Fairies Tea Party” after school a few days before the storm. It was marvelous. Dress-up costumes, crowns, bear masks along with plenty of tea and goodies. The children drew with chalk all over the driveway, blew bubbles and took turns climbing the tree and shaking the loose blossoms down on the children below, who lifted their faces upward to catch the petals of pink that snowed down on them.
I suppose I am paying so much attention to all these things this year because I had such a horrible winter, a winter that had its origins back in 1988 with a car crash.
It was June of 1988. We were in our vintage 1969 Sports Fury, a boat of a car. The car only had lap belts, no shoulder harness and I had put my feet up on the dashboard. By the way, don’t ever do this.
The lap belt kept me from flying out through the windshield but ruptured my intestines. Because I was bleeding internally I was rushed into surgery soon after arriving at the hospital. When I finally woke up I was a mess. The doctors told my husband that I could die from the infection that was all through my abdominal cavity. We all prayed. I remember praying to please let me live to see my two daughters grow up. I wanted to go to their graduations, to their weddings and hold my grandchildren. A huge request given the extent of my injuries, but I have survived to see all of those things, and more. Forty seven years with the love of my life, who could ask for more?
The cost of my survival were frequent hospitalizations and surgeries, over 20 big deal surgeries with long hospital stays and transfusions as they replaced joints and removed portions of my intestines and scar tissue. I was always recovering from some thing or another, but I forged ahead. I can say with certainty that my life would have gone in a very different direction if we had not been hit, and that the lifehas been amazing and wonderful. I was opened to a Spirit-filled life with great friends and amazing travels.
So here I am, I just turned 64 in May. I have gray hair and laugh lines at the corners of my mouth and eyes. We have four amazing grandchildren who all live close by. I do have some sort of pesky neurodegenerative disease that is taking its toll. I have an amazing pink electric wheelchair that allows me to go to museums and parks. Chuck and I are planning several trips, which I could never do with my walker.
I am telling you about the crash and the procession of medical issues that followed because it is a prelude to the special weekend my husband Chuck and I had planned last October, the start of my newest journey and my horrible winter.
We had stopped at a grocery store in Hoodsport, Washington. I was standing in the deli choosing cheese when suddenly I felt like a knife had been stabbed through my lower abdomen. At that very second I knew I was in deep trouble. Something was terribly wrong and there was no getting out of it.
Of course, I did not want to ruin the trip so I down played the pain and we went on to the cabin. We left the cabin in the middle of the night and made an hour drive back into Olympia to the emergency room where I had an x-ray. The doctor came in with the results and said that I appeared to have bowel obstruction. He said to know for sure I would need an MRI and, if confirmed, I may need surgery right away. Saying it was a bowel obstruction was not exactly correct. Ten year before I had all of my large intestines, and more of my small intestine removed. The surgeon had hooked up the good end of my small intestines to act as my large intestines.
At the emergency room I said thanks, and yes, I’d be glad to have that big injection of pain medication before I left for another hospital. I talked Chuck into just taking me home to sleep and we left in the morning for Virginia Mason Hospital in Seattle. They found I did have an obstruction and admitted me.
In all I was hospitalized four times. The first two times they put a nasal-gastric tube in my nose to see if that would clear out the obstruction. The surgeon said he did not want to operate on me with my colorful past adventures in surgery. He said my abdomen was hostile. I could have told him that.
I began to hallucinate on day three of my first hospital stay. People singing in the hall, a harp, arguments in foreign languages which for some hallucination filled reason I could interpret. I could hear an older man playing the guitar and singing in Spanish. He sang of a lost love, and finding her at the end of his life. No regrets, just so happy to have a small bit of time together. I cried it was so beautiful. No one else could hear it.
One day I spent many hours explaining to my daughter how gravit affects hospitalized patients, then the next day I discussed the impact of electromagnetic energy. I do not remember any of that. Someone should have turned on a recorder. Most of my hallucinations were not so bad. I thought the blood pressure cuff was an elf hat and that the nurses had decorated my room with small twinkle lights and tinsel. This was actually the lights on all the machines at the head of the bed and the wires leading down to me.
I made it through Thanksgiving and Christmas on liquids, but I was not happy about it. By March I was back in the hospital for the third time and this time the choice was clear, the surgeon was going to have to operate on my hostile abdomen. I was still hallucinating. I was sure the nurse put my pills up his nose instead of giving them to me, the nurses were trying to just let me die and the hallway outside my room was filled with ghosts of the dead including a young child who just stood at my door.
The 5 ½ hour surgery left me with a parting gift, an ileostomy. I now have a one inch bright red sea urchin sticking out of my belly. I thought the green liquid that filled the bag over my sea urchin looked like what I saw while snorkeling in Puget Sound. I decided I was a mermaid and I needed to always carry around a pouch that connected me to the salt water. I was released to home It was just a couple days before Chuck took me back to Seattle. My clearest memory was when my oldest daughter came to help me change my ileostomy bag. God bless her for trying to help me, but I totally lost it and tore the bag off until it was just me and my sea urchin. I decided that I needed to take a shower and stood under the water crying. I was pretty sure I’d never learn to put the bag on and would be squirting sea water out of my intestines for the rest of my life. I began to plan my impending death. I just needed to finish a couple things: kiss Chuck, hug the grandchildren and my daughters, and not be in pain. I was convinced that because it felt I was working so hard to stay in my body, if I just stopped trying I would simply die. Willing yourself to die is harder than you think. Bodies just have this way of wanting to keep going, no matter what.
I don’t remember the trip back to Seattle for hospitalization number four, or whatever tests they did after I arrived, but I was pretty sure they had put me on a floor for poor people because we had not paid my bill. I was sure there was a man in the other bed and that people were going room to room stealing drugs. I was sure that the hospital had made Chuck pay $300cash to buy a fan for the room. The results from the MRI showed a giant abscess in my abdomen, from hip to hip, about the size of a loaf of bread. They did not start any antibiotics until hours later and I just became more and more wacky. They had told Chuck they were taking me into surgery about 1 p.m. to drain the abscess. It was finally drained at about 7 p.m. I was in the basement and trolls were coming in and out of the old boiler room, which connected to a series of tunnels that ran all the way through the hill and came out by the University. (Who knew?) In my delirious state a huge troll came and stood by me, telling me I was about to have horrible things done to me. I was alone, except for the troll, because they had assured my family I was going right into surgery and they could wait in my room until I was out of recovery.
After recovery, was transferred into Progressive Care and had a whole team of nurses, including my daughter who is also a nurse, care for me. I was septic, really sick and scared. I was in Progressive Care for the next week. The hallucinations began to slow down, and as we left the hospital to come home I spent some time ritually removing all the darkness clinging to me and left it behind. I have only hallucinated a couple of times since leaving the hospital behind and I am pleased with my returning senses.
Now it is May. A journey that started in the Hoodsport deli has hopefully come to an end. For my birthday, Chuck and I went to our cabin and celebrated with four very special friends. I still have symptoms from the neurodegenerative disease that the doctors decided last summer I no longer had. Gone in name only, my weirdest symptom is that I act out my dreams. I lack the off switch to my muscles to enter REM sleep. That switch is what you feel when you wake up and can’t move. I can’t say for sure aliens are not involved, but there is an actual place in the brain that handles this function.
I am an avid dreamer to begin with, so adding movement to the mix can cause some problems. Four times I have woken up holding the end of my bag from the ileostomy, with it open, and I am sure by now you have caught on that is not sea water that is in that bag.
I started bleed badly from my suprapubic catheter that comes out of my abdomen. It is held in place by a balloon filled with water in my bladder. No way someone could actually pull it out, but apparently, I keep trying. I woke up pulling as hard as I could on the tube, blood gushing. Alas. My wonderful sister-in-law made me some “night mittens” that look like pot holders with Velcro straps. Someone has to help me into them. The idea is I could not get out of them to pull out tubes or do other things while asleep. I must be related to Houdini, because I can get them off in about an hour, then I am on the loose. Thank goodness I can’t walk very far, a few steps and I am down, so I don’t have to worry about cooking or taking a drive while asleep. I have pinched Chuck though.
The prayer I prayed in 1988 worked out very well, but like the comics my brother used to read, Tales from the Crypt, there is always a twist if you are given a wish. I decided to re-do my prayer to include no more hospitalizations, operations, no feeding tubes or other big interventions. I just want the rest of my life to be calm. I don’t want to be scared or in pain, and I want to make all my own choices from now on. I have written this all down with the help of a doctor from Palliative Care. Not Hospice, but for people like me, who are finished with climbing the big mountains, but small hills are still okay, I will decide as a I go along, I don’t want to be scared, no trolls, or more surgeries. I want to draw, paint, and love my family.
So now you are all caught up with my adventures. All the medical stuff aside, I know it was the support of my family and friends, and the huge amount of prayer support I was receiving that has once again helped me find my way to my healing path. I figure the doctors take care of the small bits that are actual, and all the immense amount of space between everything else is between me and Spirit and the flowers.
Manifestations of the Divine on May 28th, 2017 in Olympia, Washington: Hellebores, Hibiscus, climbing Hydrangea, Hosta, Lilac, Day Lily, Freesia, Beauty Bush, Sedums, Peonies, Dianthus, Butterfly Bush, Heavenly Bamboo, Rhododendron, White Willow, Spirea, Mock Orange, Clematis, Jasmine and Life.
Carry on Beloveds.
I was spending the night during a retreat on an uncomfortable couch. No one else seemed concerned that there was a small animal, no, more like a sea creature slipping around the corners of the room while the women settled in for the night. “Just don’t provoke it”, the retreat leader warned me, “If you try and fight it will become violent”.
Everyone falls asleep while I lay awake listening to the sound of dry leaves being moved as this thing moved through the room. Suddenly it is on me. I grab it by its body which feels like raw calamari, its long tentacle snapping back and forth with tremendous power. It becomes a life or death struggle as I realize it intends to go inside of me. I must stop it at all costs. The tentacle was progressing down my nostril and into the back of my throat. I scream in terror and pull as hard as I can to dislodge the thing, and finally I am able to pull the long tentacle back out of my nose and I throw it to the ground.
It is 5:45 am and I awake to the nurse knocking on the door to my hospital room. “I heard you screaming from down the hall, is everything alright?” My nasal-gastric tube lay on the floor. I touch my face. The tape which had been holding the tube that ran through my nose and into my stomach was gone, in its place a smear of warm sticky blood. Am I awake or asleep? The nurse sees the tube and turns on the lights for a better look. I had done something that I would have considered an act of highest desperation. Maybe an addict trying to leave the hospital or a confused elderly patient after surgery could pull off this level of self-inflicted pain. I am crying now in humiliation. I am that confused patient.
Usually when we dream our muscle activity is dialed back, allowing us to dream we can fly without feeling the need to jump out of bed thinking we can fly. The “off switch” in our brains allows for all kinds of wonderful and at times terrifying dream experiences with no harm to the dreamer or anyone nearby. When the muscle activity isn’t turned off and individuals act out their dreams, this is a REM sleep disorder called without Atonia. Atonia refers to the muscular paralysis that occurs following sleep to keep the body from physically reacting to dreams while in REM sleep, so when “without Atonia” occurs the keys have been left in the ignition of a Maserati and your dream state is raring to go.
This behavior, known as Hospitalization Psychosis, can be one of a group of psychiatric issues that one in three patients experienc after as few as 3 days in the hospital. More common in the Intensive Care Unit, patients suffer stress because of sleep disturbances, the continuous light levels, a lack of reference to day or night, a feeling od loss of control, and all the medical monitoring. Of course well people do not go into the hospital so the stress of critical illness, new medications, lower oxygen levels, electrolyte imbalances, dehydration and getting poked and hooked up to a multitude a devices can make anyone lose some marbles. Luckily these symptoms usually subside when the patient returns to their own living environment.
There is also a group of neurodegenerative disorders including Idiopathic (of unknown cause) Parkinson Disease, Lewy Body Dementia, and Multiple Systems Atrophy. It was Lewy Body Dementia that took the life of Robin Williams. I am sure that his widow and my spouse could exchange stories of sleep disorders that started as quirky and became onerous.
Often poorly diagnosed, the sleep disorder aspect of these syndromes can become obvious within a hospital setting. I went into a long hospitalization with the symptoms already of this sleep disorder. At home I was dealing with screaming in my sleep, trying to get up out of bed, and occasionally pinching my poor husband. The drugs which I take have put the brakes on, causing some amount of relief, but they were not the panacea I had hoped for. After eight days in the hospital for yet other symptoms of a neurodegenerative disorder, my vivid dreaming without Atonia has followed me home. It is getting better, but I needed to consider that I could fall, plus I have another tube besides the nasal-gastric tube that I could decide was a sea creature trying to invade my body. It would be damaging to my body to start pulling it out willy-nilly.
For now the solution is a pair of lovely mitts my sister-in-law graciously created for me to wear at night. With my hands safely strapped in to my “Angel Mitts” I have extra time before my Ninja hands escape from the mitts that are made to keep Houdini captive. Last night it took me 4 hours to get them off. Hours of safe rest, as my mind raced off into unlikely scenarios. My husband of 43 years woke when I started to wake up. I did not ask him if I was yelling, or giving a speech on Democracy, one of my most recent recurrent dreams, influenced I am sure by the looming election. He has loved me through some pretty weird stuff, but there I was with my mitts on. We have entered a new phase.
Standing in the doorway he smiles and sighs, “We should have held onto those handcuffs”.
From the MSA Coalition website:
REM Behavior Disorder:
Non-Pharmacological Treatment Options
REM sleep behavior disorder (RBD), also referred to as REM sleep without atonia (RSWA), is a
condition in which muscles fail to relax during REM sleep, instead, remaining active or contracted.
RSWA is diagnosed via sleep study (polysomnogram) and is distinct from sleep walking, sleep terrors
and nocturnal panic disorder. Bed partners of patients with RSWA often describe that their partners
display highly active and/or violent behavior during sleep, such as flailing limbs, dream enactment and
walking from or falling out of bed. Patients often recall their dreams, which corroborate with their
enactment behavior. However, rather than being aggressive in nature, patients usually report their
dreams as being defensive, such as fending off an attack as opposed to being the attacker. Though not
all patients with RSWA experience dream enactment, when present, it causes actual or potential injury
to both themselves and their partners.
RBD is regarded as a potential early sign of MSA and other alpha-synuclein disorders. Risk for
developing Parkinsonism after being diagnosed with RBD is 20 to 45 percent within 5 years and 45 to
55 percent within 12 years. MSA is the most common of the alpha-synucleinopathies to be associated
with RBD, with 68 to 88 percent of MSA patients affected. Antidepressant use increases risk of
developing RBD by 500 percent (all facts this section ref 1).
If this story reminds you of you, or someone you love please see a Sleep Specialist.
For more information of other symptoms of MSA and other diseases involving misfolded alpha-synucleins please check out https://www.multiplesystematrophy.org/
I am very excited about showing my mandalas this month at Unity of Olympia. Last weekend a whole group of friends hung over 100 mandalas in the sanctuary and foyer. It is amazing to think that since I began my journey, being diagnosed with a neurological disease called Multiple Systems Atrophy, I have filled 19 journals with writing and drawings and drawn over 800 mandalas.
I started when I was told I did not have long to live. Between 8-10 years is average, but I have never considered myself average. I am expecting an extraordinary outcome. When I would start a new journal I would draw the first page and the last page because I figured if I did die mid journal I wanted my last page to be filled with love and joy.
My drawing could not be contained in a journal, so I began using watercolor paper. My preference is 300lb cold press, but to afford that in the amounts I was using became expensive, so I experimented on different weight papers in both hot and cold press. I had never used hot pressed, snubbing the perfectly smooth paper for the bumpy rough paper that absorbed the color in such fascinating ways, but I am leaning toward hot press right now.
I have tried every permanent ink pen I could find and have settled upon an old set of Rapid-o-graph pens I have had for years. Metal tip, refillable and the promise of a smooth deep flow of black ink that really does it for me.
The introduction of color is new for me. I had turned away from color after discovering Sumi-e ink and brush, and for many years only painted in black and white, but after being diagnosed with this wacky brain dis-ease, color calls to me. I had to find some way of painting that was not going to include containers of water because I spend a majority of my time now in bed. So I have settled on Tombow watercolor pens.
I paint every day. I know that painting these mandalas are healing my brain. The misfit proteins are beginning to unfold from their errant origami shapes, to return to their original template to act as a key in a lock, to be able to pass through those important neurons that control really important details of life like remembering to breathe and the beat my heart. It appears that once the connection is lost it is lost. So far it has only disconnected from things I can work around, adding an occasional tube here or there and taking medications to try and help certain symptoms.
Actually it is ice water, mandalas and my family’s love that help the most. Plus, I am a Religious Scientist, not Scientology or Christian Science, which is why the organization changed its name to Centers for Spiritual Living. A vague name, but you know something is off if you have to spend the first 5 minutes explaining what you are not. It is a New Though Organization, think Oprah, or change your thinking, change your life.
It is because of my belief that we can heal and create that I say I was diagnosed with instead I have MSA. In no way do I claim this disease. I do claim the color as it absorbed in to the paper, the repetitive patterns and circles that fly out of my hand like some kind of message I am receiving from Spirit. Sometimes I feel I am catching the prayers that are being said and capturing them on the paper.
When I was diagnosed the doctor said to arrange for Social Security Disability, make an initial contact with hospice and asked if I would donate my brain. That was three years ago. I had my first symptoms of MSA 13 years ago, that is beyond the expiration date for this disease, which causes doctors to reassess the diagnosis. I would expect them to ask what my secret was. A special vitamin? A trip to John of God? But no, only a perplexed look and then they something like, well, maybe it is Complete Autonomic Failure, which actually sounds a lot worse than MSA, but does come with some additional time, but not much. And revisiting what to name what is happening to me it does not change the fact that I am now in a wheelchair. It is pink so that is good, but it is still a wheelchair.
When I cannot sleep I paint. It is almost dark in the room and these paintings are done to slow my mind. I left the Catholic Church went I was a teen, but old rituals die hard and my Mother did say that once you are a Catholic it is burned into your soul. I take my pen and make the first circle and mark the four directions; in the name of the Father, the Son and Holy Ghost. I begin following the design that seems to appear before my pen. I can’t really claim these dark mandalas as mine, I am always surprised to see what has transpired during the night, some heavy and brooding, other flowery and light. Occasionally a pen has rolled into the covers, releasing its color into the sheets and onto me. I find splotches of color in random places on my body like I am finally turning into a mandala myself.
I started this post to invite you to see some of my work next Friday evening. The mandalas are very different in person, a photo cannot capture the energy that seems to make them expand and contract. The other thing I want to say is this is the first time my mandalas are for sale, and if you can’t make it Friday, you can buy them on my website. Each one is so different my suggestion is to tell me what colors you like and let me chose for you.
Please let me know if you are reading my posts, my stats reflect lots of traffic but no one leaves a message. Too startling? Boring? Poor sentence structure?
The mandalas are up all of June and Unity is open each afternoon for viewing so stop by and check them out.
In grace and ease,
I want a teddy bear. I asked for one for my Birthday last month but no bear arrived. I think it is because of my specific request regarding a teddy bear that is keeping it from coming to me. I am a one teddy woman. I found my first teddy on a high shelf at the Rexall Drug store in Lakewood. When my mom got it down for me to see I hugged him and knew he was my bear. Just the right size so his head rested over my shoulder. A firm, almost weighted, butt that I could cup close to me. He was dark honey brown. His fur was not really long and fluffy, or too short and stiff. He had floppy arms and legs, no fancy articulation for my bear. He had a real bear expression with kind eyes that seemed to be able to look right into the heart of my little 4-year-old self. He was a bear of substance and worth.
Tim arrived that Christmas and I never let him go. I slept with him, told him all my secrets, he was the perfect companion. When I was older I went to summer camp. No stuffed animals were allowed at camp. So my Mom sewed Tim inside a pillowcase and he became a very suspicious looking bumpy pillow. I had Tim on my bed until we moved from our farm about 13 years ago.
We had sold the farm, found a new condo closer to town and Chuck and I had pretty much gone through everything in the barn and house before I began having severe abdominal pain and ended up having surgery and a long hospitalization. The date for the move were already set, the house sold and our friends and family all came to the rescue and helped Chuck pack up the rest of our stuff and move into the condo. In some box, somewhere was Tim. I am still looking for him, thinking that certain box is still safely packed and he will return.
I keep thinking I could buy a bear that was like Tim, many have come close, but I have not found him yet.
Did I say this blog post was about finding a bear? I meant to say my little brother died. My little brother who had recently married and adopted his wife’s three grandchildren, walked into the woods and put a gun to his head and pulled the trigger. The reasons are dark and deep, secrets that could no longer be kept, darkness that he somehow kept buried inside until it became too much.
He was the kind of man who always carried his gun and believed in his right to do so. So that gun was right there with him in his time of overwhelming emotional pain, so easy to reach down and have a solution right there, so final.
I continue on with my own disease which will eventually end my life. Living each day to the fullest, I have no concept of what it would be like to want to end it. I also do not know the depth of my brother’s pain and my story is very different than his. But I do understand how precious life is and what demons he was dealing with that caused him to leave in this way.
He loved his family, rescued horses, loved trail riding and jeeps. He was a big bear of a man, a quiet guy with sparkly eyes that seemed to look right into your heart.
It is after midnight and I just woke up my dear husband to go out to the kitchen and bring me some rice pudding. In grief we all search for something to fill the giant hole that cannot be filled. So tonight I am looking for my lost bear and eating pudding. If I allow myself to dig a bit deeper, I realize I am looking for my lost brother too. My bear of a brother, a man of substance and worth is gone.
It’s a quite Christmas Eve. Our grandchildren spent the evening with their father. Taking full advantage of having this rare kid free moment, all their gifts were wrapped and a serious Dr. Who marathon is underway.
Over the years there are variations on our rituals, this is my third Christmas after being diagnosed with Atypical Parkinson’s. The first Christmas I pretty much cried about everything. Too weak to decorate or warp gifts, I sat around thinking that this Christmas really could be my last.
A whole year went by and I did not die, so I decided to order presents on line and use decorative sacks instead of wrapping. I cried that second Christmas too, but I had by that point come to grips with the reality that for sure, maybe, possibly be my last Christmas.
This year I feel pretty darn good and I have plenty to be thankful for. We have a new grandchild who was born with a full head of hair and continues to get chunkier every day. I have a new shiny pink electric wheelchair and a great van that allows me to hook in and ride in the passenger seat. And an amazing “second tier” spiritual learning center.
We are going to a nativity play this evening, new grandbaby Liam is Jesus and our oldest grandchild Alex is the angel Gabriel. What grandparent could refuse? We will be home early, maybe a movie in bed. Although I would have normally added …and eat frosted sugar cookies… but I am on a special diet of rice, peas and broth. My inner- little girl is stomping her feet and I have to admit I did eat one or two cookies. Luckily I like rice and peas so that has helped, and a trained chef in the kitchen she has been able to transform these three items into some pretty tasty dishes. I actually had risotto for lunch yesterday.
Christmas when I was a child certainly do not compare to the quite grandparent Christmas we have now. My family, like everyone else had long standing traditions that could not be changed in any way. My brother had his tradition of opening all the gifts before Christmas. With an exacto knife and tape he could work off the tightest bows, unwrap the most fragile paper without a tear. So for at least several days before Christmas he already knew not only what he was getting, but he opened all our presents. Then he would start trying to get me to ask what my present was. I’ll give you a hint, he would say, you can wear it outside. Don’t tell me I want to be surprised. Okay, just one more hint he would say, it’s soft and fluffy. STOP IT! I would cry don’t tell me! Of course within 15 minutes he would have told me. I think that it was this reverse surprise, having to act surprised as gifts were being lobed at us, is what caused my brother to barf every Christmas eve.
Our family had a tradition to go out to a Chinese restaurant every Christmas eve. Exotic foods like pork slices with hot mustard, little bowls of soup with one wonton, dish after dish of things that I had known what it was. My favorite was the sweet and sour chicken, deep fried with bright orange sauce. And of course we would end the meal with tea and a fortune cookie. It was a blast, until the owner would come to the table and announce that my father had a phone call in the other room. A few minutes later my dad would emerge, a sad look on his face as he explained he had to “go on a run”. Now my father was a mortician. So “a run” meant someone had just died and he had to leave to pick up a dead body. Oh my God! How horrible to have someone die on Christmas Eve. Was it a Christmas related death? My imagination swirled with the potential hazards that lurked around a Christmas tree. When my brother and I pressed for gory details, is it a child? Did they fall placing the star on top of the tree? Too many holiday cookies? My dad would just say he was old and it was his time. Oh come on, really bad timing for sure.
Almost like he had been expecting to leave, we had driven two cars, the wood side paneled station wagon and the call car. The call car was like a hearse without any decorations. There was a big upholstered back and the front seat. My dad would often dive the call car when he was on duty so he could go straight to the scene. If my brother and I went any place with him we had to ride in the back where they put the just dead bodies. There were several small windows in the back, which my brother and I put to use by pretending we were dead and then sitting up and looking out the windows, startling the driver in the next lane. Dad made up a really fun game when we rode with him, a contest to see who could play dead the longest and we were both very good at this game. We would usually make it all the way home. My dad would announce we had both done a good job and that we both won.
The Funeral home business was a family business. My grandparents live above the funeral home, and my dad married into the family business. He embalmed people, did the grave side business of attending to the grieving families and even did the ladies hair and makeup, which my grandmother also did.
My Mother worked evenings at the Rexall Drug store. On those evenings my father would be in charge of putting us to bed. My mother was insistent about me sleeping with soft pink rollers in my perfectly straight hair every night, and on those nights dad had to set my hair. He explained to me that he only way he had learned to put rollers in was on dead people, so once again I would play dead while he carefully placed the rollers. You would think that I would have caught on to his ingenious method to us still. Very still.
So being called out on Christmas evening was both horrible and as I go older, a bit expected. It was so weird that every year this same thing happened. I am so sorry I have to leave, he would say, I’ll be as quick as possible so we can open presents. And off he would go.
It was also an after dinner tradition to drive around and look at Christmas lights. We would go to Western State Hospital who used to put out quite a display with a whole little town and a mirror ice rink with skaters whirling around to music that was blasting out of a couple of speakers. I was always looking for escaped patients, running wildly through the decorations, the arms of his straight jacket loose and flowing behind him as he ran through the ice skaters.
The best Christmas display was back at the funeral home. Entering the cemetery there were actual fires with signs leading us to the next tableaux, Mary on a donkey, searching for a place to stay, shepherds guarding their sheep by night, angels hanging from wire like they were flying over the shepherds. Behold! We bring tidings of Great Joy! Then finally we arrived at the big finale a whole nativity scene. On our way out of the cemetery I looked for ghosts rising from their graves, burial attire flowing in long strips after year’s underground, long hair and nails. Then at the very end we would get a quick glimpse of the three wise men with their camels, but we were done. It was time to go home.
Driving into our driveway there was my father, waving his hands in the air YOU JUST MISSED HIM!!! SANTA WAS JUST HERE!!! As we hurried out of the station wagon he explained that he had tried everything to get him to stay just a few more minutes so we could see him, but he was a busy man.
The youngest in the family, my sister always went down the stairs and into the recreation room first. There was also a “theme tree” in the lovely living room that was for guests only and they would be arriving shortly. Following the screams of my three younger siblings finding their Santa gifts I finally got to go down the stairs. The room had been transformed into four perfectly merchandised areas, one for each of us. No names where ever on our Santa gifts, but it were easy to tell which one was mine. One year there was a new doll on the market that I really wanted, and there she was leaning against a new sweater, the most beautiful doll in the world. Not a baby doll, oh no. She was a real womanly doll with breasts, standing proudly in her black and white bathing suit. She had several outfits hanging in a special carrying case. What is this?! A long black sequined dress with tulle around the bottom and her own microphone and stand. I was in heaven.
After we showed our Santa gifts to everyone we would move into the wrapped gift stage. My father acted as Santa to pass out gifts. He liked things to move quickly which I think added to the excitement, or that it reminded him of his football days and could get just that perfect spin on the gift as it lobed as he would yell to Randy, from Aunty Ta Ta! To Rich from Grandma Lu! To Nancy from Aunty Trudy! It seemed thousands of gifts were thrown and ripped open in a matter of seconds.
I forgot to mention that the family rule was to open your gift as soon as it was thrown to you, so at any given time five or six people were opening their gifts, exclaiming about them and repeating who it was from; extraordinarily gifts were passed around in the middle of opening other gifts. Finally, with the delight of a man well spent my dad would light a cigarette, still sitting in front of the very flammable under watered Christmas tree. I was not concerned; I already had created a disaster contingency plan in case of a fire or other disaster which never happened.
Then came the gathering the pile of gift wrap portion of the evening, my dad placed all the gift wrapping, ribbon’s, boxes and anything else he could get his hands on into our gas fire place. He really packed it in there. It will burn down he said, with the assurance of Smokey the Bear himself. It really was not a gas fireplace like today. It was a gas pipe sticking out of the inside wall of the fireplace. No wood was used in this fireplace, simply turn on the gas and throw in a lit match. After the initial explosion it would be just gas flames spurting out of the pipe. The paper burn spectacularly. The occasional plastic would smell for a while but my dad said it was nothing to worry about; we would just open a few windows to get the smoke out.
I am now back to the doll of my dreams. I change her out of her bathing suit and into the sparkly dress and the little shoes. Hum, there is only one. One tiny black stiletto pump was missing. OH MY GOD, it must have gotten in with the wrapping paper. The production of burning stopped as my father, this dead person getter, Santa Claus seer, smoking package throwing quarterback stopped everything to look for that tiny shoe. I actually do not remember if that shoe was ever found, it did not matter. What I do remember is my dad looked for it, and I remember him looking for it.
By this time the rest of my large extended family had arrived and my mother began pulling out “pizza burgers” she had left warming in the oven all evening. Melty pizza goodness in a bun. Paradise.
As I grew up some traditions began to change, it stopped being a matter of life or death, well more like heaven or hell for us to attend midnight mass. This particular Christmas I was singing a duet, Oh Holy Night, and could not miss midnight service. The roads were icy and there where pockets of heavy fog as I began my drive to church. There is a long straight road that goes in front of Western State Hospital. At that time there was still a rock fence that went the whole distance of the hospitals property. The Christmas light were still on, the skaters on the mirror had been removed from the decorations some years before. I am practicing my song when suddenly something was in front of my car. I could not see it clearly at first, but as it walked closer I saw a large black and white cow. It blew great gusts of warmed air into the cold. Now a car coming from the other direction stopped too and both cars just waited until that cow decided to walk to the side of the road and jump the rockery. Oh, Holy Night, shepherds quake at the sight.
Years have passed, tonight my daughters have tip toed out of bed to play Santa. Morning will come quickly. So I have this moment to reminisce. I remember my mom always signing as she cooked, those pizza burgers filled with her love of family and friends. And I remember dancing on my dad’s shiny shoes as he twirled me around to Etta James. I feel them close tonight, and all those we have loved and have lost. And I am grateful at the same time for the continuation of life, family and friends.
There's a saying old, says that love is blind
Still we're often told, seek and ye shall find
So I'm going to seek a certain lad I've had in mind
Looking everywhere, haven't found him yet
He's the big affair I cannot forget
Only man I ever think of with regret
I'd like to add his initial to my monogram
Tell me, where is the shepherd for this lost lamb?
There's a somebody I'm longin' to see
I hope that he, turns out to be
Someone who'll watch over me
I'm a little lamb who's lost in the wood
I know I could, always be good
To one who'll watch over me
Although he may not be the man some
Girls think of as handsome
To my heart he carries the key
Won't you tell him please to put on some speed
Follow my lead, oh, how I need
Someone to watch over me
Won't you tell him please to put on some speed
Follow my lead, oh, how I need
Someone to watch over me
Someone to watch over me
Multiple Systems Atrophy is a tricky disease. While alive, people who are suspected of MSA can have one of two diagnosis. Probable or Possible. Probable MSA is when you have all the symptoms of the disease, Possible MSA is when you have some of the symptoms of MSA.
Yes, I am in a wheelchair now, and have a suprapubic catheter, and a c-pap and medications that would knock out a horse.
And Yes, I have scaled back my activities (I did not do the Halloween decorations this year so we are still missing the "Mad scientist table", filled with ghoulish lab accoutrements. I am working on at least a cauldron of dry ice for tomorrow.
But my life right now is about my life. Selfishly not answering the phone, not allowing a bunch of visitors and diving deep into the work of Phineas Quimby, Emma Curtis Hopkins and Ernest Holmes.
So this week I had my first appointment with my new neurologist, who has downgraded my MSA diagnosis from Probable to Possible. Amazing, unheard of, mystifying and miraculous. Getting better from disease that is suppose to kill you within a couple years, here I am standing in my truth, continuing in my gratitude. Of course, this is not unheard of, but I am very aware of the amount a prayers that have been coming my way.
I want to thank all my teachers through all the Science of Mind classes I have taken over the years, my Practitioner I & II teachers, all my Holmes Institute professors and teachers, and most important I am so grateful for my inner knowing that continues to lead me towards my personal healing.
So what this means is that I am healing from this horrible disease that does not take prisoners. Life is good.
I had a dream of holding onto a string high above the ground. I begin to feel the familiar feeling I have before as my blood pressure drops. I hold on tight, but I begin to fall asleep.
I am falling. I am aware of myself on the ground. I stand up and take hold of the string again. This time I am handed a heavy cast iron pan that I have to hold while I clutch the string above the ground. My diagnosis. The very name of it weighs me down and I fall again.
This time when I get up I decide not to take the pan. I might have this disease, but I do not have to let it stop me in this moment.
Once again I grab the string. Life is so precious.
I have a disease that cannot be fully diagnosed until I am dead and they look at my brain. On that day doctors will look under a microscope and be able to tell for sure if a certain protein has folded itself into arrant origami, unable to pass through the neurons. Although I will gladly give my brain for research, I am requesting that my family not be told whether I actually had Multiple Systems Atrophy or if it was just a wad of bubble gum stuck in my ear. I do not want them to think that there might have been another cause for my symptoms or to think my medical team did anything wrong. If only they had pulled that gum out of her ear everything would have been fine.
It’s pretty clear at this point, after 10 years of fainting and losing control of my bladder to finally find a doctor that could order the right tests to rule out the other things it could be.
I am ten years into having MSA, and two years more with a diagnosis. According to the Mayo Clinic website, people with MSA typically live about seven to nine years after multiple system atrophy symptoms first appear. Ten-year survival is rare. The thing is I decided to be a non-compliant patient and not follow all the orders I am given. Dr. Bernie Segal, in his book Love, Medicine and Miracles noted that non-compliant patients often lived longer than those who follow all the instruction and die on time.
I have explored every nook and cranny of alternative medicine, faith healing and even several years of therapy. I though what was happening was all in my head. I was right, but it was not a mental disorder.
A DAT scan showed I have a buildup of alpha-synuclein proteins, folding into wacky folded origami that stops the flow from neuron to neuron. There are a bunch of diseases that have a similar story. A protein of one type or another, fold up incorrectly somewhere in the brain. They cause Parkinson’s, Alzheimer’s, and many others. It just depentds on what protein and where it is in the brain. With MSA it boils down to a deterioration and shrinkage (atrophy) of portions of your brain (cerebellum, basal ganglia and brainstem) that regulate internal body functions, digestion and motor control. Not something you want to have.
MSA does not have a list of definitive symptoms, it’s more like a choice of one from column A, three from column B. Depending on the combo, there can be a Parkinson’s type or a Cerebellar type. So people who have this disease often question whether their symptom could be related to MSA or not. Dry blurry eyes? Yep. Cough and choking? Yep. Pretty much every answer is yes because of the multiple part of the disease.
This is about my personal experience, for goodness sake see a doctor if you have any of these symptoms, they all suck. Thank you to the Mayo Clinic web page for the actual medically correct information:
Predominant signs and symptoms are those of Parkinson's disease, such as:
Predominant signs and symptoms are lack of muscle coordination (ataxia). Signs and symptoms may include:
This is what happened when I was told I had MSA. Remember much like being informed of the death of a loved one, sometimes what actually is said is not what was really said. Your brain shuts off at a certain point. It is always a good idea to have someone with you for doctor’s appointments. So here is my account, which my husband says is not correct.
Two really smart Neurologists came into the room,
never a good sign.
Doctor #1: First the good news, you don’t have Parkinson’s.
Me: Thank goodness! That would be horrible!
Doctor #1: Well, you do have another Parkinson like disease (looking at the computer screen not me) It’s called Multiple Systems Atrophy. I have asked Dr. #2 to come in with us, she is the specialist in this kind of disease.
Me: speechless, dizzy, can’t breathe
Dr. #2: I suggest that you apply for disability right away. MSA is on a compassionate care list of diseases that will move you quickly along in the system. It is a list of disease where time is of the essence. Then get to know the hospice group in your community. You might not need them right away but it’s good to have something prearranged. Oh, and we want your brain for research after you die.
Me: Is there a surgery or pill? Some cure for this?
Dr. #2: No, I am sorry. We can treat your symptoms and keep you comfortable, but there is no cure for this disease and there is a shortened life expectancy.
Me: Well *&$!@$%^&&!!!!!!
My husband and I make our next appointment and walk without speaking down a long corridor to the parking garage. We both started crying. I said I was going to commit suicide when it gets really bad. He said yes, I know, but that is not today.
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