I Am My Grandmother’s Granddaughter.

I Am My Grandmother’s Granddaughter

It is Samhain and as much as I love the decorations and the fact that I can openly proclaim I am a witch, it is honoring my ancestors that drives this festival. Every route to my ancestors begins and ends with my deeply beloved grandma.
A decision by my parents when I was six months old to have me live with my maternal grandparents altered the course of my life forever. I ended up living with them for six years and after that every holiday, most weekends and summers even after they moved from that beloved tiny town. We would come into Milwaukee for family dinners ( my fathers very large family) and holidays. I was always with my grandparents and when they left any event I usually went with them.

My grandmother was the source of all herbs, potions, lotions, helped deliver a few babies and dealt with farm animals in Hustisford, Wi. Doctors and veterinarians were very scarce in that tiny town, especially when she moved there in the 1930’s. Divorced, a single mother, excommunicated by the Catholic Church during The Depression she managed to forge a very good life for both herself and my mother. Not an easy task. Small towns throughout America held deep bigotry against Catholics, excommunicated or not. It was my mother that was dealt the worst blow from that bigotry. An incident that was never forgotten and left the young man who delivered it with a justly deserved miserable life. My mother was terrified of her father and my grandmother who divorced him because of his unacceptable treatment of my mother, was not willing to let her continue to suffer. She shrewdly offered her ex-husband to give her a one time payment and then to never see my mother or her again. Oscar’s lifestyle was hampered by a having a child, my mother, once born, he had little real interest in, other than scaring her, so he willingly accepted. Grandma then had enough money to become the proprietor of the Lone Pine Tavern, the only place you could get alcohol for many miles. She had all the locals throughout the year. In the 1930’s people did not bring alcohol fifty miles from Milwaukee or many more miles from Chicago with them as they opened summer cottages on the islands in Lake Sinissippi , including my father’s very large family. All of them would give her orders each week for what they wanted. She remarried in 1938 to my very dear and beloved grandfather, a lapsed Lutheran, setting tongues to wag. He would be the man I would come to judge all others by. Only one has truly held up.

My grandparents understood how to let me have what they called “a thinkabout ” . A quiet loving environment where I was allowed days before answering questions or talk about what bothered me. As an adult I realize both how rare and truly special it was for them to respect my introverted nature that wanted time to look at all possibilities and to really let all my feelings surface before answering questions or asking ones I had. They were quiet people who spoke volumes in touches, glances and a word or two. I learned about real love from them. Truth is without them I would never have learned nor known how to truly be happy or create a very happy marriage.
Any months when the lake was not frozen, was filled with many moon lit row boat rides, especially full moons. In that boat grandma would fill me over and over with her stories of Baba Yaga, Freya, Frigga, Skadi and host of other Goddesses that she only shared with me. She would repeat my favorite fairy tales, ones that were “Cinderellaesque”, without a prince, but always with a girl who usually had a doll in her pocket and Baba Yaga. She told me tales of a princess who had a glass heart that was broken so her heart would become larger. Every story I know about Faery came from both she and my grandfather who was both a believer and storyteller in his own right. They guarded and grew my empathic abilities, took me for walks in the woods almost daily. I learned about life and death as we would walk through the ever changing seasons with plants that appeared dead to only return each spring and find baby animals or dead ones. Grandpa insisted that even very young children should understand the cycles of life and death thus insuring I would fear neither. Both of them helped me understand land spirits and elements including the stillness of bitter white winters. Grandma insisted that if I wasn’t at least a little dirty, stained with grass, trees or plants, wet from the lake or snow and without my beloved raven during the day and owls that nested in the maple tree outside my bedroom at night, I simply had not had a proper day. She would buy the odd pieces of any china that neighbors were selling. Tea, supper was filled with miss matched china that no one worried if it got broken. Nothing is more magical than when adults trust a four year old with real china, pearls and a beautiful dress my Aunt Celia would have recut around a stain or cigarette burn and sewed just for me to wear as I pleased. Grandma was comfortable with eating baked cabbage with neighbors as she was eating a twelve course dinner. By the time I was six I knew how every fork, knife, spoon and even the odd escargot thongs were to be used. It was her belief that I should be comfortable in any setting with any combination of people that gave me great confidence to go anywhere, make friends from every walk of life and become whatever I wanted, if only for a day.

Grandma loved their home. She had five gardens that included a large wonderful vegetable garden and lots of wild berry bushes. She had every kind of tree that would grow in Wisconsin. I believed she could grow anything. She also had a second structure, “house”, my favorite, that was built by my grandfather and neighbors who had never found a way to thank my grandma for all the help she had given with her healing ways and my grandfather who never turned off anyone’s electricity regardless of whether they could pay or not when he owned the electric company during a good part of The Depression. The neighbors had lots of construction materials and skills. A few of the very rich ones bought hot house glass and any materials that others did not have access to. They built a house that dried herbs, stored herbs, winter food, and a hot house that grew plants and flowers year round. My grandparents were able to do a smaller reconstruction of that house when they had to move to Milwaukee because of my grandfather’s health.
A single significant memory; when news of Bloody Sunday reached my Great Aunt Celia, the matriarch of my father’s family, my grandmother brought her an Easter Lily from her hot house. A moment that still finds me overflowing with tears and love. While my grandmother on the whole disliked my father’s family for very good reasons, she and my Aunt were best of friends and the two women I could completely trust with anything, I mean anything at all.

My grandmother came to live with us after my parents divorced. I would love to tell you that it was wonderful. It drove that final wedge between my mother and me and left my grandmother having to prove daily that her daughter came before her granddaughter until the day she had enough. And grandma squarely told my mother if she forced her to make a choice it would not be her. My mother unable to discuss anything regarding her decisions, feelings, this very weird sibling rivalry she felt with me, to dismiss us both. I began eating with my grandmother in her room. It gave us unlimited private time and left us both grieving the loss of my mother in our lives. It was my grandmother who told me to move as far away as I could get and not to look back. She assured me, my mother would not come to visit and would treat me as a distant guest when I would come home to visit. I ultimately decided that was far better than futile attempts to get her to work this out. My sorrow was more for my grandmother than me. My mother had been the center of her life and she did not deserve this.
My grandpa died when I was ten. It was shattering for me and it was my grandma who sat with me in our grief for all the years after. She did not die until March 15, 1984. It is an inconsolable grief , the kind that you simply have to carry for life.

Blessings,

Bridget Robertsonimage

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January 2,

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There are a few events that make clear dividing marks between before and after. There is no bridge that can be constructed to get back to or even visit that before. A select few life events will change your very core in irrevocable ways. My soul was and still is altered without my ever having given consent.

January 2, is the anniversary of my first husband’s death. He had been diagnosed two and a half months earlier with pancreatic liver cancer. Oncologists kept calling it very serious. My mother, a retired nurse and my stepfather a retired doctor were both given access to his records. It was my stepfather who used the words “end stage” from the beginning. My mother, in full nurse mode made sure I could give insulin injections, change bile bags on a liver stent that never quite worked, change out IV’s, checking the line flow that included anything from from antibiotics to feeding bags. She had everything scheduled for me and there was a visiting nurse allowed by my insurance to stop in for fifteen minutes twice a week. I had a full handle on all necessary home hospital equipment as his needs changed very rapidly. I had worked out getting him to daily chemo and every other horrid test and surgery they proposed. I knew most, if any of this would not help him. But, it was his life and his decision. It was out of love that I supported any one he made.

On December 22 hospice took over, a nurse was now three times a week. I was able to get someone to assist in his bathing and personal care twice a week. I went out on full, no pay leave. I had been able to work very few hours per week until then. His family kept insisting I was going to lose my job…as if that mattered. Or tell me I would need to wait to take time for “the end”. You have no idea what it took to explain to them that it had been the end since the diagnosis.

When you midwife someone you love through death, being there daily with very little help, reality changes. Forever. Death moves in with you without invitation and pulls up a chair throughout each day. I knew to make it an ally. It took very little time for me to know he would die soon. Death would now  be my companion for life. Not because he was dying, because death initiates you as its life companion.  I was and am acutely aware of it beside me for all my remaining days in this world. Death serves a purpose. Life is suppose to have a beginning, middle and ending. In my religion the Goddess that midwifes you into life, always stays with you through it including midwifing your own death. Since then,  I both see and communicate daily with her.

If I believed in a devil it would be grief. It pays no heed to it being a quarter of a century later. Nor that I am very happily remarried. It made that demarcation of before and after. It runs a course that has very nasty timing. Rogue waves would be easier to predict. The only sure thing is that it will come out every January 2. The body is how grief keeps score. Time does let dates slip from your mind, but the body will not. If I am lucky unexplained tears will be limited to this one day. Other years it starts sometime in December. As I search for the cause of this body weeping, eventually I consult a calendar and from deep in my soul the date of his death with bubble up. Grief is tenacious. It will grip you at will and nothing will hurry it until it has completed this round. I have learned to sit back and brace my cells while it runs this emotional roller coaster in my body. And it is my body that bears the brunt of these visits. There is a large crack somewhere inside me that allows entry and both generates and receives the blast of pain, loss and drowning. None of this is about my first husband. No, it is about what happened to me as I focused solely on his death assuring myself I could process my own feelings at some future date. It was a horrible bargain to make. I had no idea that the future date would be a recurring one.

I now have cancer. I promise you no matter how terrible my days may be, this side of the fence is a cake walk compared to being the spouse care taking. I have an exceptional husband. One who both knew and fully accepted that my old grief mixed with my own cancer would be debilitating at what is suppose to be the ” happiest time of the year”. When he worked in retail it was easier . Anyone who works during Christmas season in retail, pretty much hates the holidays by the the third of December. There is no pressure to be happy. Since leaving retail, he still watches and comforts me when that grief makes it chaotic appearance. He is rare and I know that.

Grief will move on. For a few days it is being stuck in glue that demands tears, quiet and endless patience as it racks me with that pain and mental mixed with emotional agony that has no basis in my disease. No, I can’t find all the words to explain the debilitation. There is no treatment other than deciding to head straight through it. Anything else only makes it worse. Grief also has many other faces. In the midst of this pain I can find myself feeling a strange invincibility. It is a dangerous yet necessary task to live that out as well. Other “insignificant” life chores will pull at you. In some absurd perception, you refuse to do them with a daring, demanding them to attempt their worst. This part of grief knows nothing would be worse than what has already happened. It is a boldness born of living through a terrible event that causes this recklessness. I did tell a Senior Vice President at my job when I returned the first year there was nothing he could do including firing me that would come close to what I had been through and challenged him to do whatever. He didn’t and stayed wary of me for over a year. I don’t recommend that response, but it may be inevitable to get others to understand grief. Oh, and honestly there is no one, no seminar, no therapy, herb, essential oil, no spiritual guide, book , technique, meditation or wisdom that will make this better.

It’s January 2, and this is what is.

Bridget

Revealing Myself Through Diseasing. Losing My Healthy Status Is A Very Big Thing.

To everyone who loves someone who is sick and those who are sick.

Don’t look away. Not now.

“It’s a big thing when we lose our healthy status.”

Those words, rang through me. I am grateful to my beloved niece, Tara Rachyl, for giving me such a profound statement.

I have multiple chronic conditions and a cancer ( NET Carcinoid/Carcinoid Syndrome) that is both chronic and acute to boot. I lost my healthy status nineteen years ago. We are hard wired to expect sick people to get better or worse. When they remain sick for extended periods or years, people don’t always understand. The sick person, may remain alive, but in a perpetual state of sick or diseasing. Please read that last sentence again.

Sometimes friends and loved ones end relationships. They wanted equity. I can’t guarantee equity. I am taking one day at a time, sometimes one hour at a time.

Everything just keeps getting scarier when your physical body changes irrevocably. In the process of diseasing, my body started to lose many things I had taken for granted. When it outright failed and faltered in ways that are also embarrassing, it felt like cosmic cruelty. How much about these losses do I want to let anyone know? Will they care or be offended if I do? Why not stay silent? Why write about it all? Because, I live in a visual world, that hates anything that does not fit within strict unrealistic standards. Because, we expect people to get better or worse, and we need to stop that.

If you still have healthy status, know that being ill puts us on the outside of normal society. Disease, life threatening or chronic, has ways to make us feel like inferior beings. Healthy society contributes to those feelings. We are exposed and vulnerable. In my bareness I am walking a razor’s edge that begs me to be fearless. In doing so, I am opening up a possible floodgate of ridicule and abandonment from some. I am lucky. I have a fiercely loving and loyal husband and circle of chosen family and friends. Even knowing that, herein lies the honesty….illness has taken much more than I ever expected and will likely continue to do so. To not share my story would lure me into hiding again. It would keep lies of omission between us. We need to stop distorting our real physical shape and physical experiences from each other. I despise the typical media show of beauty and health “standards”. Many diseases, not just cancer, alters our physical bodies and lives in irreversible ways. Let me speak of mine.

I had one third of my left cheek surgically cut out when I was forty three, twelve years ago. It was a large raised bumpy area that developed at my earliest stage of puberty. It was in part, a dermoid tumor. Turns out, after reviewing the testing many years later, there was a section that is part of my cancer. The surgeon admitted there were hundreds more tiny “spots” that he could see. It would require surgery that pulled back all of the skin from my face ( just like a facelift) and scrape them away. This is not something I ever want or wanted to do! Once the cancer was diagnosed, he didn’t want to be the one to do it either. He withdrew, suggesting I talk to surgical oncologists or other plastic surgeons. I ultimately put this off because I could have tumors anywhere under my skin. There is no plastic surgery for the entire organ of skin covering my body. Nor a reliable test to see them if they are not raised or large enough. Even if they could surgically remove every single one, that does not cure or arrest my cancer.

The most embarrassing effect is also the one that has held me back at every turn. Almost all of my teeth broke and cracked. This does happen with some carcinoid patients. Then, they began to disintegrate. Pain medications that I have refused for many years were initially part of the problem. My speech has become difficult to understand. Teeth help us pronounce words. I was an excellent speaker in both large groups and one on one. No longer. I am having trouble finding an oral or maxillofacial surgeon who will remove my few remaining teeth and get me dentures. The doctors in this specialty, are very nervous about the need for an octreotide IV and push along with an experienced anesthesiologist with what is normally routine surgery. (This is the ONE surgery I want done!) In fact, this unexpected loss of teeth is THE determining factor in who I spend time with or where I go. Nothing affects our appearance and others perception of us more than teeth. Who hasn’t laughed, heard or made jokes about people with no teeth?

Eating has become a perverse necessity. Food must be very soft or liquified. There are almost no places to eat out. Thank goodness for high speed blenders and juicers. I “graze” on their results for much of my day.  I can’t eat a full meal at one time without risking my tumors producing high amounts of peptides, hormones, and histamines. That could cause a (another) carcinoid crisis which can lead to a coma or death.  I have a reduced list of foods I can eat. Tyramines are a real problem. I make milk from rice. Our home is a production line of scheduled soaking and cooking of seeds, rice and legumes needed for each day. If this sounds complicated and time consuming, that’s because it is. Animal products are out of the question. It’s the only thing my cardiologist and gastroenterologist can agree upon. If eating becomes impossible, enteral feedings will be in my future.

In the first three years of the cancer I was bed ridden. Outside of those three years, I was wheelchair bound. A car accident from 1995 left me with two burst discs and a lot of nerve damage. Spinal surgeons refused to do surgery because I also have  fibromyalgia. Immobility brought a weight gain of two hundred and forty pounds. The medical world calls it morbid obesity. It comes along with open disgust from many people who assume you can’t control your eating or a number of other inaccurate judgements. The first oncologist dismissed the weight gain. Why? He thought I was dying. Every doctor around or after him made it THE issue of every single appointment. I was well aware of my size 38 body. I asked for their wisdom. Their greatest plan…..eat smaller portions. What a useless and ineffective idea. I lost over one hundred and thirty pounds by eating a soft whole plant diet with an enormous amount of filtered water. The surprise…. the weight loss was ugly. It left me oddly shaped. Cancer weight loss is uneven and lumpy at best, even with exercise. My spine, shins and hip bones show. I have to bring and sit most times with extra cushions, including when I am in the bathtub. My thighs, stomach and upper arms are disproportionately overweight.

The second unwelcome surprise, I lost an additional seventy pounds in six weeks. Malabsorption is common in Carcinoids. It scared me beyond words. I researched and tried something that slowed the weight loss down. I still have weight I can lose. Just  not through malabsorption. Thanks to my now, third, physical therapist, I can stand up straight and do limited walking. I have begun intense stretching like a dancer. She is trying to save and increase muscle tissue in my body. I finally made peace with this lumpy, misshapen, mostly, size 12 body when I decided to stop avoiding taking pictures. The world gets to see what I look like. That look is of a scarred woman.

I have developed ninja warrioress skills because of doctors. The surgery doctors would love to do……..is aggressive and preemptive. I’m not letting them cut away major parts of my digestive tract on a maybe. That, would definitely put a clock on my life. I am a very reluctant and difficult patient. If I let them, they would just keep finding more and more pathology to report and suggest either an obscene amount of questionable medication (which always comes with side effects and/or allergy problems) or continuos dissection of my body. Whether they personally will do it or not seems to be up for grabs. Most of my energy is used for the resistance battle against all of their “modern skills”.

My natural skin tone is very fair. Pale would be accurate. So, flushing, the hallmark of carcinoid syndrome, that can turn my face purple is both painful and humiliating. People will both stare at you and ignore you at the same time. It’s a confirmation of many quantum mechanic theories, this being invisible and visible all at once. People will also comment in derogatory terms about you, in front of you, but not to you. I won’t lie. It does hurt. Strangers let it be known that your physical presence is undesirable. All of this while the searing heat and intense itching are driving me to ice buckets to dunk my face and/or back into, whether in private or public, to simply keep me from ripping off my skin with my bare hands.

I throw up and/or have diarrhea almost daily. I need to know where a bathroom is every time I leave my front door. Whether I can travel, or how often, is determined by an app that helps me find restrooms, even within blocks of my home.

Pain is always present. My normal everyday pain begins at a seven on the 1-10 scale. I can’t spend my life waiting for a day that I will feel good. Those haven’t come in years. So when I leave my home, it isn’t because I am feeling well. It’s because I was a recluse for about eighteen years. Being home bound was a tiny life. I may not  have a choice about being at home 24/7 at some future date. I can’t seem to accurately judge how much activity I can do without overdoing. This week I exacerbated pain throughout my body even in places I didn’t think could have pain. My recovery, can  then take more than a week. Pain medication did not help me. I was given many at first. The glue from the patches still causes severe itching on every site where they were placed. People don’t always have the option to refuse pain medication. It may not be an option for me at some point. I am certified in many alternative methods, my experience thus far, is relief from any one source or mixture is spotty.

This past weekend, I started wheezing and being out of breath. This is just the latest symptom in my carcinoid syndrome. Frightened, I only told my husband. He had noticed. I don’t know which of us was more concerned by this newest development. It happened again, yesterday. This could stop my physical therapist’s progress. Being unable to breathe is not only terrifying, it makes movement impossible.

There are other times I look just fine. There’s a real absurdity. These diseases are called “invisible”. My appearance cannot tell you how I am really feeling or the status of my illness, unless I am flushing. The  “Oh, but you look so good”, has nothing to do with what I am experiencing. Here is a small list of things you will never see even in person, or on my face, or in a picture.

My chatting away with a friend won’t register the excruciating pain in my back, arms and legs screaming through my nervous system.

My writing can’t let you feel the ice cold in the bones of my hands that I will wrap in a heating pad for the following twenty four hours with limited relief.

My words cannot help you understand that I spent hours looking up most of these words over and over to write this blog, because I can’t remember the spelling for two seconds.

I don’t speak of the many times I am unable to understand a single page of a book that I reread five times, because comprehension has deserted me.

There is no way to capture my need to shut off every light, have nothing touching my body with only quiet music playing, because any other sense stimulation feels like a total body assault.

When my iPad becomes too much stimulation and my inability to engage on social media disappears because my brain will not make sense of what is in front of my eyes, I don’t understand either.

I can’t shift the feelings of missing out, after I have forty eight hours of insomnia followed by twenty hours of sleep that prevented me from, fill in the _____________ (friends birthday, husband’s office function, lunch dates, web meeting, circles, etc.).

I imagine some are expecting this to wrap up with many hidden gifts from these deficits. Not today. That’s for a different post. I am sitting with my discomforts as discomforts. I won’t deny and run away from them. Yes, there is always an ongoing dance of laughter and joy somewhere while these are occurring. I observe people rushing to those dances as if we can inoculate ourselves from any further deficits. We can’t. I am not unique or special. We all have great difficulties. Mine are through disease. I decided to give them voice, because we all need to be understood and be gentler with each other. Too many of us have invisible struggles. My hope is that we all develop our abilities to become more compassionate, empathetic, loving, kinder and humorous. Somedays humor is all I have left inside of me.

My niece, Tara Rachyl, gave me a great ending to this blog as well:

” It is a stark reality, YOUR everyday. And there are just so many who don’t understand how your life gets flipped, turned upside down when you lose “healthy”. Nor do they understand that their well intentioned platitudes are hard to receive with grace when you are 12 months, 2/5/19 years down the track from the acute onset of the disease that took away your health.”

Thank you Tara. You are articulate, brilliant, beautiful and I love you.

We both have lost our healthy status. It was and is a very big thing.

Blessings to all,
Bridget Robertson.