I was looking through my work today and saw how far I've come in my own art. I thought it would be cool to show the progression of skill and confidence. Remember I am entirely self taught and I didn't start painting until my 30's with large breaks in between to explore other media. You are never too old to start something new that you love, you are never to old to gain a skill, and everyone, even the greats, started with stick figures. If it gives you joy...do it!
This story has been taken down for rewrite. It has come to my attention that I have a lot of learning and growing to do and in order to make this story what it deserves to be it needs a bit more love. Don't worry I'll let you all know when it's up again.
This year has changed my life. I had no idea when it began just how far things would go or how much of my life would change. Things are harder now, but in true cosmic twist it’s also better. My life makes a lot more sense even as things get more and more confusing.
I am we. We is me. I am currently going through the process for diagnosis of a Dissociative Disorder. This is a group of trauma based disorders that can cause multiple personalities. The most famous and extreme version of this is Dissociative Identity Disorder (DID). This used to be called Multiple Personality Disorder and was used, badly, in movies like ‘Sybil’ and ‘Split’. [Please note: these are terrible examples of DID and have just enough information to be dangerous] There is also Otherwise Specified Dissociative Disorders (OSDD formerly DDNOS) 1a and 1b. There are even classifications in between. Some experts include Borderline Personality Disorder (BPD) in the dissociative spectrum. I can go into detail about the differences between them and which disorder we expect to get diagnosed with and why, but in the end, all this means is one thing: There are other, real, people living in my head, or our head. You’ll notice I switch from I/me to we/us frequently. This is to acknowledge the others that share this body, this life, this existence.
We all have parts. A work self, a home self, a party self. Many people say they have to have their “work hat” on to answer a question in their field. This is fairly normal to the human experience. We all compartmentalize and dissociate to some extent. There is a stage of development between five and nine where personality development is fluid. Normally by age nine (some experts set the bar as late as 11) all those parts get smooshed into one cohesive personality. What happened for us and others with certain dissociative disorders is repeated trauma stopped that process as a way to cope. Each of those parts developed independently as full complete individuals. If you met them you would not think them flat or an affectation. You would see a normal person with their own likes and dislikes and ways of understanding the world. If you hooked the body up to an EEG, each personality would have different brain waves.
But we are not left with just those people. The brain is now locked into this coping mechanism and will continue to make new parts as needed to cope with stress, a new skill, anything needed. This is not purposeful. It’s entirely unconscious and no one in us has the ability to control it. New personalities, called alters, come when they come. The alters can diverse and are often fully developed. Not all are human. This is very common. Some can be characters from beloved movies or books, even real people in your outside life or historical figures. It all comes down to whatever the unconscious brain thinks we need at that time to deal with what life throws at us. Dragons, wolves, demons, fairies, your favorite uncle, even your abusers can find their way into the fabric of the inner landscape.
Every system, or group of alters in one person, is different. Some switch out overtly like we see so commonly in movies. Some merely blend with the host, the alter that handles daily life. You might see the speech pattern or gait of the host change subtly. If you never thought to look you might not ever notice. Some systems there is amnesia between who is out, meaning no one else holds the memory of what they did while in the body but them. Some systems everyone remembers everything, or has access to those memories…and everything in between. There are literally no rules. Systems learn their way of coping with life as a multiple based on the personalities formed and the unique stressors life hands them. There is no one way to exist with this.
There are no hard and fast rules. Nothing we say here is a blanket statement, merely our own experience.
DID/OSDD is a response to trauma at a specific stage of personality development. It is meant to be hidden. Some systems are better at hiding than others, but many fight to remain hidden, even after the host learns of their existence. A fear of letting anyone know about it or convincing yourself you are faking this and just delusional seems to be built into the fabric of many systems. It is very common to fight with these feelings. Many systems go round and round with themselves about this. How long they fight with it or the ability to open all the closet doors has a lot to do with the collection of personalities in their system and how deep or extreme the trauma is.
It is almost a joke in the DID/OSDD community that the most successful systems are never found out. While some discover they are part of a system in their teen years or early adulthood, a large percentage are not unearthed until 30’s or 40’s. Two systems very near and dear to us were in their 60’s when their alters first felt safe enough to show themselves instead of pretending to be the host. Our experience finding out at 41 is not uncommon.
DID/OSDD is not rare. It affects more of the population than schizophrenia. It is estimated that diagnosed systems make up 1% and 3% of the world’s population. Undiagnosed systems are estimated at 5%. That sounds small but think about it for a minute. That means 5 out of every 100 people in the world have a system of alters. The world population is over 7 billion people. 5% of that is 350 million. 350 million people worldwide have alters. This is not rare. Here are some more detailed numbers.
There will be friends and family reading this wondering how and why. Quite honestly, I, Susan, as host, don’t really know. My alters have given me snippets to give me some ideas. I do have flashbacks and the true c-ptsd (complex post traumatic stress disorder) is rearing its ugly head. But I do not have enough information to definitively say this person did XXX to us at age X, XXX times. In many systems specific alters will hold specific trauma memories. The host could not live and be functional if they held that information. That is the primary purpose of a system of alts. What registers as trauma for a child is all over the map. This does not necessarily mean abuse of any kind. There are children of warzones who developed systems. Medical trauma, like cancer, or repeated operations due to accident. Emotional abuse or neglect. Bullying in extreme forms. For most, what makes the alters form, is a complicated mix of several things in the child’s life at that time. There is rarely any one event or subset of events that cause this.
For us, beyond our own personal therapy and journey inward, it doesn’t matter. This is who we are now. This is the life we have to lead now. We will not share our trauma with anyone, friend or family, besides mental health professionals as needed for diagnosis and learning to live as we are now. Learning about and coping with our trauma is a personal undertaking and private. If you have loved ones who have opened their closet doors to tell you they are a system, I urge you not to pry into why. Focus instead on all the people that make them up now. Let the alters know they are safe. Let them make themselves known at their own pace. See each one as a different person and learn just like you would with any new friend.
To paraphrase a quote from someone we respect: We do not go through this life as one person. We are and always will be, the dragon, the dude bro, the father figure, the protector, the little girl, the panther, and many others.
We are the Collective Radio System.
For research and general information:
DID in the DSM5
Dissociative Disorders AMA
Dissociative Disorders: CRCC Lecture
Dissociative Experiences Scale (DES II)
How common is DID?
Living with DID/DDNOS and Dissociative Disorders FB
An Infinite Mind
The Ivory Garden
Dissociative Disorder Hotline: 1-800-950-NAMI (6264)
Voices in DID/OSDD:
The Entropy System
DID Mom Vlog
Multiplicity and Us
Acrylic and Aether
My son is 17 today. One hell of a wild ride and a year to go before he's on his own. I don't know whether I should be relieved or scared. Probably both. For this week's #WednesdayWritings I submit to you Cry. A poem about motherhood.
A baby cries
Nothing fills me with more fear
Am i good enough?
Will he know me?
Am I up to this?
280 days of insecurity led to this
6720 hours of thinking and rethinking my choice
My desire for motherhood
Making a choice to try
403200 minutes of breathing for another
Listening to frightening advice
Feeling the naysayers tell me
This wasn’t right
Deflecting badly the 1001
telling me everything from
lanolin for tender suckling
to poisoned needles will make him sick
280 nights of worrying myself to sleep
A baby cries
Nothing fills me with more relief
I did it!
My body did this!
Through 6720 hours of his mother
Through doctors taking my choices away
And cutting him out
His beautiful face
Covered in the substance
That kept him alive all this time
Red skin and dark hair
I was made for this
I was created with organs
That held him close
I live in a world where science
Can create those organs for others
So that I could love him
So that he could grow up knowing love
A million tiny movements
Inside of me
And I meet him face to face
A baby cries
Exhaustion covers the worry
Is he hungry?
Is he scared?
Is he sick?
Do I need a doctor?
Does he have a rash?
Will it get worse because I didn’t see it in time?
Use diaper rash ointment every time
Never use talc
Don’t eat spicy food
Did I eat something spicy today?
Is that why he’s crying?
A baby cries
Blinking sleep from my eyes
I hold him close
The routine takes thought away
Endless nights rocking in place
No rocking chair in sight
Taught me it’s easier
To just lay side by side
Ignoring a thousand complaints
A thousand what if’s
Naysayers using it as explanation
For my bad parenting
For every time my son cries
His little baby cheek rests on my breast
Warm body tucked in next to mine
And I know I made the right choice
And all those nights ago
When I chose love
A baby cries
He cries and cries and cries
No end in sight
Makes one bit of difference
They’re all right about me
I can’t do this
I’m not a good mom
Why won’t he stop?
It’s all the spicy food I like
It’s the formula
He’s allergic breast milk
He’s allergic to peas
Too much sun
Too little fresh air
Everyone has an answer
That tells me I’m doing this wrong
But not one of them
Can make him stop
Make him sleep
A baby cries
For hours everyday
I’m a mess
I just want someone to hold me
Tell me it will be okay
That’s all he wants
This being with my son’s face
I rock him through
Singing to drown it out
Never giving up
Strength I never knew I had
Showing this tiny person
When the nightmares are too scary
When the bully pushes him down
He’ll know I love him
He’ll know he can come to me
You cry little boy
You cry for however long it takes
We’ll cry together
I’m your mom
I love you
A baby cries
Stretching his little baby legs
Urge to move and explore
Pulling him farther and farther
From my protection
What will he put in his mouth?
What will he touch?
Should I be keeping closer watch?
Should I spank?
Should I shout?
Should I laugh?
Should I pen him in to a tiny space
Or leash him to my wrist?
Should I let him find out
Or protect from every last lesson
The world has to offer?
I am not up to this
Moving about thing
Why can’t you just smile
From your carseat
And bat at toys I dangle?
Don’t put that--
--in your mouth
Well no wonder the tears
Stream down your face
That should never be in your mouth
I’m a horrible mother
And the questions
About my ability
A baby cries
Weary I shake my head
And hold him close
Cleaning the mess
He looks to me
Like I have all the answers
Like I can make any booboo better
For a moment
I think I can
There will be a day
When love is no longer enough
To heal the hurts of the world
But that day is not today
He’s a baby
Nothing is safe from
A marauding mind
And flailing arms and legs
And today a lesson was learned
He smiles reaching
For the next NoNo
I seem to have forgotten to move
He knows I will catch him
Every single time
I know I’ve done everything right
A baby cries
This one is not mine
But I know how old
I know what it wants
Just by sound
I didn’t know I had a super power
Given to me by my son
Instinct drives me to tell
This hollow eyed woman
Fear and exhaustion in her gaze
What the baby needs
But I only smile
Remembering all the advice
All the times I thought I wasn’t good enough
And I know my words are not what she needs
Eventually she’ll find the love
She’s strong enough
A baby cries
A little girl
While her brother watches on
Nothing fills me with more fear
Nothing fills me with more relief
Nothing fills me with more
My opinion of bras. They suck! Man, I could end this right here. Bras have never been simple for me. I’m a very large breasted woman. So large in fact most places don’t even make my size. Anything over a DDD and you’re stuck searching. Even the rare G can find stuff in specialty stores. Not me. H’s are near unheard of unless you want to pay $90 a pop.
Let’s add insult to injury. I have not one but two, yes you heard that right, two frozen shoulders. It has become near impossible for me to put a bra on without help. Not that my willing spouse in the house has a problem with that (I think he enjoys it), but there’s something a little soul destroying about not being able to take care of your basic needs on your own. Let’s not even talk about what it’s like to dangle five pounds each from your shoulders (yes I weighed them. Shup. Don’t judge me). No matter how good your bra is, and mine are rather impressive with under support, when you get to my size pressure will be put on shoulders and upper back. Doesn’t matter how I wear them, it just hurts. Frozen shoulders are no joke. Some people don’t get a lot of pain with them, but I have a pain disorder so the universe decided I could handle even more pain. Gee, sometimes I wish the universe didn’t think I was so strong. Talk about karmic backhanded compliment…but I digress. Bras now hurt in a way I can’t cope with, so I gave them up.
I held on to my daily bra torture for a long time with these shoulders. I had fears of embarrassing my teenagers with their friends or school officials. See it’s really obvious when I don’t have one on. They are big , and a gift of genetics and the fact they were working breasts feeding babies means they hang. I personally do not care that they hang. Never had a partner give a rat’s boob about it, and these things made milk. That’s kind of a miracle when you think on it. I wear my stretch marks, saggy breasts, and gray hair with pride. They tell my story, and a big part of that story is being a mom. No regrets there. Not for one second (even when I want to toss the kids through a window). However, the last thing I wanted was to walk into school and the teachers and all their friends notice I had no bra on and the things they would say to my kids.
I also couldn’t shake the memories of women and teenage girls in my life and around me. Listening to their judgment of proper female dress code and the hell they wreaked on those that didn’t live up (not that I ever did live up as the school basket case ala’ Ally Sheedy in Breakfast Club). Isn’t it funny how we impose the greatest social mores on our own culture groups?
It came down to sanity. It wasn’t worth the searing pain, and I’m talking not able to lift my arm enough to adjust clothing and use the pot after wearing one for a few hours. I started out with really baggy and thick clothing, and scarves (forget that its like 60F outside…I’ll just sweat). I went out nervous as hell entertaining my spouse with a rapid fire monologue of all the reasons why I shouldn’t bother with a bra. How I was in so much pain it wasn’t worth it anymore and we were only shopping not going to a five star restaurant.
But something amazing happened.
No. One. Noticed.
Not one person did a double take or stole a backwards glance at my chest. No one said anything nasty. There were no whispered conversations when I passed. The check out people looked at my face (which was sometimes unusual because with a bra my assets precede me. I’m almost used to certain individuals seeing boobs first). I did not end up on People of Walmart. And, boy, I was ready for all of that if it happened. I had entire monologues of scathing repartee about minding their own business, and my right to go topless if I wanted. Even jokes both self deprecating and insulting to the other. I was armed to the verbal teeth. Haven’t had to use a single one. Talk about taking the wind out of my sails. I’m half happy and half disappointed I didn’t get go toe to toe with an asshole.
I started caring less and less about going out braless. I’m a modest sort naturally (not that anything is wrong with flaunting what you’ve got. You are an autonomous person regardless of what you wear or don’t wear. You do you, it’s not just me). I doubt I’ll go out in a tanktop braless, but pretty much anything else is fair game now. Oh I’m sure if I want to dress up I’ll put the girls on display. There is a certain amount of power that comes with big breasts when you want attention. On a day to day basis, though? You can forget it. My life is easier, less painful, and more confident without well presented boobs. In some cultures my shape without a bra is considered normal and even beautiful. Why have I let the others convince me I need this thing of metal and canvass (for those that don’t wear one underwires are curved metal rods…okay so they’re not typically canvass, but cloth can be stitched and layered in a way that is just as strong) strapping me down?
Let the ta tas free! Unless you feel better about you with one on and they don’t cause you pain or discomfort, toss the bras. They aren’t worth it. Very few people will notice or care. I promise. Those that do notice are probably not worth your time.
Side note for the bra believers: Yes I have been professionally fitted, and get refitted on a regular basis. If you choose to wear one, don’t trust what size you think you are, go to a pro and get fitted. It’s the difference between wearing pants made out of cactus needles vs. silk. An estimated 70% of people with breasts are wearing the wrong size bra. Most higher end dept. stores like Daltons or Macy’s, or actual lingerie shops, will have someone trained on staff to help you for free. You don’t have to actually buy, but if you’re big like me it might be the only place you find your size for under $100.
We need to talk about this spoon theory business. For those that are unfamiliar Spoon Theory was originally created by Christine Miserandino in the blog, But You Don’t Look Sick. The short version is she was in a restaurant with her friend who asked the loaded question, “What is it like to live with chronic illness.” Thinking fast she gathered spoons as a visual aid and used them to describe her life in units of energy represented by the spoons. The main take away is that people with chronic illness have a finite amount of spoons (energy) and we always have to think about how we going to spend it. Being sick for a short period of time is one thing, but when you live your life constantly thinking this way it changes how you see the world and the decisions you make.
This resonated strongly with me and I immediately jumped on the spoonie bandwagon. It was great to have this lexicon to describe my life to others and to help loved ones get that sometimes I just can’t do things because I have to spend my spoons elsewhere that day. As I got deeper into spoonie culture more and more fellow would be spoonies were unhappy with how this definition of living with chronic illness took over and sometimes fell flat.
I spent time looking into this trying to understand or think of yet another way to describe life that would fit these holes and there just is nothing. Looking at able bodied people’s response to spoon theory I realized they weren’t fully getting it, causing them to misuse spoon theory and create gaps in understanding. This is not to say spoon theory fits everyone with chronic illness or that there aren’t some issues, but I wanted to spend some time breaking this down a little better.
Imagine every day you have a finite number of spoons. Every person with chronic illness has a different amount of spoons. It has to do with medication, other treatments, self care, what needs to be done, weather, ect. Some will have five spoons in a day; some 20. Each day can start off with a different amount. Some days I’m down to three, easily, and others I have fifteen or more. There are so many variables I cannot tell you from day to day how many I will have. My ability level changes every single day. I have learned to gauge quickly what I *think* I will be able to do but I’m not always correct. I personally know a person with Fibromyalgia, like me, who gets through their day with 25 on average; and another person, also with Fibromyalgia, who is lucky to get seven spoons on a good day. It is all very individual.
For the purposes of this blog let’s say I average twelve spoons a day barring any weirdness. To help compare, using people in my life as a model, the average able bodied person starts most days with thirty. A younger or very fit person who is active will have more, and an older or unfit person who is not very active will have a little less.
Using myself and the twelve spoons, think about your day. Based, again, on myself and how much energy I expend doing various things, use this table as a guide for how you want to spend your spoons.
Remember you only have 12 spoons to work with and you’re not guaranteed having that many the next day, how are you going to spend them? You can sometimes steal from the next day in emergencies but then however many spoons the universe gives you the next day are down from the get go. You cannot just decide I will do XYZ one day and ABC the next. You are not promised the ability to do that.
Every day I have to think, consciously, what needs to be done, and what is most important and what can I let go if my body doesn’t work. I can’t go to the beach or get a random ingredient for dinner or sew a quick button on a pair of kid pants just because I want to or it needs to be done. Sometimes I will wake up feeling like I have 20 spoons and an hour or so later suddenly have five. I don’t make many plans because I don’t want to have to say I’m sorry, today is a no go after a friend or loved one put in all this work to do something that included me. I miss out on school things with my kids because even though we knew this concert was coming my body doesn’t care about calendars, and I can’t just push through it. When spoons are gone they’re gone. It isn’t about weakness or grinning and bearing it. You can’t magically make a dollar appear when you’re broke. Same thing here.
The hardest part about all of this and where the main problem lies in bridging the understanding gap between persons with chronic illness and able bodied persons, is that there is no formula. Explaining how we make choices about where our energy goes is only one step. The next one, and quite probably not the final one, is understanding that every day changes. I’ve said many times in this post that each day I have a different amount of spoons. One day I might have 15 and the next three in a row, four. I have many well meaning people in my life who love me and just want to help in some way look at my activity level from day to day like we would look at a financial budget and try to audit what I do and then “discuss” with me why I may or may not choose to do this activity they really wanted to do with me. I don’t have a simple answer for them and it gets very hard to explain in a loving way what is going on.
It frustrates me that people feel the need to do that. The belief that I must not be active enough or too active or not doing something right or I just need to push through it takes away my sense of autonomy over my own life and sometimes my own body. Even if I was somehow missing some important thing that would make life better or at least more predictable, no one has the right to judge whether or not I do it. I don’t have the right to judge if you decide a big screen tv is a better investment than new car tires. I’m not in your head. I’m on the outside and you may have a very valid reason I haven’t thought of yet. Able bodied people are by and large given this kind of autonomy.
I have to live in a way that most people can’t even imagine. All I want is to be trusted that I know my body and I know my illness. I am going on 13 years diagnosed, and a strong possibility I’ve had it since I was a teenager. Your friend with fibromyalgia is living life the same way I am but they are making the choices that work for them. Their choices will not necessarily work for me.
I want to say to all the people in my life that do this, and there are many: I love you! I love you so much I don’t have words. I recognize that you love me and want me to be healthy and happy and have a good life. I recognize you feel helpless watching me go through this and are grasping at as many straws as I am to help. Please remember, I know me best. Please remember, when I have to bow out, or just smile and nod as you speak of “all your other friends who are sick say to do this”, I am not angry with you or trying to hurt you. I’m just trying to live my life on my terms the best way I know how.
Feeling helpless is the hardest part of watching someone you love go through this. Here are things that help me. I encourage you to speak to your own loved ones about what helps them. Their answers may be different from mine. Some of these things we expect spouses/partners to do, but sometimes spouses/partners can’t or just need a break from constant caretaking.
I usually like to have a clear wrap up, thank middle school English courses for that. Today though I think I will just say: Thank you for reading, I love you, and I hope this helps you understand loved ones with chronic illness, or how to speak to loved ones about your chronic illness.
*Side Note* A friend recently pointed out to me this also translates well into mental illness and those coping with death, abuse, and/or violence. Sometimes we have limited emotional or mental spoons too, and when they’re gone, we’re basically goo.
Death happens. It is unavoidable. It is a time of change, varied emotions, and has long lasting repercussions. The person you loved created a shape inside of you where your souls touched. When one dies that imprint, that space for them, is always there. It can never be filled by another, or things, or places, or actions. Every person we touch has an effect on the shape of our souls. In Western cultures there is pressure to get on with things after a death doing a disservice to the loved one now gone and those left behind to grieve. Death has become frightening and lonely, relegated to hospitals and for the very lucky, hospice care. I’ve always believed that it was the way our culture treats death and grieving that make it feel so foreign and stunt the healing process of everyone…and the acceptance of those that know death is coming for them. There is a movement now, pushing back against this paradigm, reclaiming death from fear and stigma.
Doula is a from Greek and means “female servant”. This has been adopted by the midwife community to mean individuals of all genders that help assist a person in labor and the first few days of life with the new baby. The Death Doula movement further appropriates the word to mean individuals of all genders that stand beside the dying and help the family with the early stages of grieving.
Janie Rakow, president of INELDA, the International End of Life Doula Association, describes a death doula as, “... someone who acts as a guide and companion through the end phase of an illness. This work can start as soon as someone is admitted to hospice.” She says, “the doulas work with the dying person and their loved ones through the final dying process and into the early grieving stages afterward.”
Death Doulas are on the forefront of a movement to take dying out of hospitals and institutions and into compassionate care. The primary role for a Death Doula is to literally stand and take witness. To hold the hand of those that are dying alone or help loved ones hold the hand of the dying and give peace on the start of this journey. No one should die alone, unless they have chosen to do so. A Death Doula stands present for the dying and gives them what care they can. A soft voice. A song. A story. A held hand. A hug. Gentle brushing of hair. Reminders that it is okay to free themselves from the fetters of this world and all the pain being caused by whatever it is that brought death to them. Reminders that there is nothing to fear and they will not leave this world unloved.
A secondary, but equally important role, is to help the loved ones left behind. Even when you know death is coming, even when you take the time to say all the things and are present for the moment, it does not diminish the grieving, the fear, or the pain. Even shock may still happen. Part of that, as I said before, is because of our own societal mores on what grieving looks like. Loved ones are left to clean up all the loose ends, comfort others who may not have known the dying nearly as well as they, and then get on with it. Shove themselves into a awkward box that no one truly fits into, and lock it up tight. The death turns into trauma. Death Doulas seek to end that.
Often this role will just look to outsiders like the busy person. Giving hugs. Listening. Making calls. Talking them through dealing with remains and appropriate remembrance services. Taking in all the information that may get missed when the medical staff bring in forms or speak. The grieving sometimes zone out and can’t catch all of that. It is being the strong one so the loved ones don’t feel they have to be strong and can actually begin to grieve in a way that is meaningful to them.
This work is very similar to hospice care, whom I hold in the highest esteem, but with less emphasis on the medical side and physical comfort, and more on the spiritual needs and peace of mind. Death Doulas can sometimes work with a specific faith but more often they will be secular but spiritual, offering to learn about the beliefs of the dying and to speak about other cultures until they find what is right. Or in the case of being unable to meet the dying before the event to walk the family through those same things. This is midwifery to the soul as we send them on their journeys. It doesn’t matter if that journey is to feed the ground and rejoin the earth, to walk into Hel (Norse/Germanic afterlife not the same as Christian Hell), to dance in the summer lands (early pagan belief), or live in peace in Heaven. All of that is valid and necessary to help the dying take that step with peace.
The movement, it should be important to note, are not advocates of suicide as we understand it in Western cultures. There is a difference between having no medical options to stop or slow death and choosing to go out on your own terms (assisted suicide), and suicide because of depression, trauma, or mental illness. Even in the Death Doula community there is a split on beliefs about assisted suicide. Death Doulas celebrate life and honor it’s passing with reverence. Helping someone to take their own life is not a part of the average Doula’s belief system. Even in extreme cases it is not taken lightly or easily.
I walk the path of a Siedr, an early Norse/Germanic hedge witch. These were the witches of yore that traveled where they willed and could be helpful or not as they deemed necessary. One of the primary roles of the Siedr was to assist in births and deaths. I gladly serve as a birth or death doula upon request. It is how I practice my faith and honor my gods. Every Doula has their own journey to bring them to this space. Some will do their greatest work here, and some will move on. We are as varied as humanity, but we all come together for the belief that death is not something to fear and should be treated with respect and love.
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I’m sad. Not depressed in a clinical sense. I’ve been there before. I know what that feels like. This isn’t it. I’m just...unhappy. I have things to be happy about. I am in no way destitute, but I am still unhappy with life in general. I haven’t reached the pinnacle, though in many ways I’m much closer than most realize.
As I look around at the landscape I realize this wasn’t the mountain I wanted to climb. It was so hard to tell down there at the bottom which one I had started on, and the crossroads were all blind instinct. Now, after all that work, I’m not where I wanted go or even on that path. There is nothing wrong with where I ended up. In fact some seem to be impressed by it. How do I explain that yes, there is some notoriety here, but I wanted the notoriety over there instead. It’s like shooting the hat off a person when you were aiming for the apple. Yeah it was a cool shot, but not what you wanted.
Some people find themselves in this situation, and happily surprised, just keep going. There are those that the question of which mountain they are on never mattered as long as they had something to reach for. There are those that any success acted as personal empowerment and they gladly set on that mountain path headless of the rocks. In fact those persons seem to be able to leap over chasms and move boulders. We look at them as shining examples. I am not in competition with anyone so I am happy for their success.
I was not meant for mountain climbing
I’m not made for that kind of life. Success to me is far less tangible. All those plateaus and peaks and crags and valleys are fun and interesting, but not meant for me. I’ve always rejected the rat race. I reject the idea that I have to reach for anything at all. I challenge the need to have a traditional job, or parent like our society says, or live my life by any standard. I fully resent money. I resent the need to earn by someone else’s standard in order just to live. Why can’t I barter for food? Why can’t I make my own shelter? Why must I live life in this way? I can fool myself, by finding something semi interesting to do for a time, into thinking that I can live by these means. I excel most of them time when I set my mind to it. I’ve even made a name for myself in certain circles, for what it’s worth. In the end, though, I always end up feeling dissatisfied.
I have a deep need to live life unfettered. I hate being tied down by anything. Some ties I choose, like my children and lovers, but my lovers know never to hold me back, and my children will one day fly on their own. While I love animals of all kinds I don’t own many pets, other than cats, because I can’t just up and go when I want to. Cats can handle a night or two without you as long as there’s ample food and water. My dream is to live out of a mobile home so I can pick up and go whenever. Once we almost did just that with plans on homeschooling the kids, but we didn’t get the financing in the end.
I’m tired of trying. I concede the need for gainful employment and income so we don’t starve, but I’m going to do it my way. The truth is while my body *does* make working from home a need, I’d choose it anyway. I’m going to learn what I want to learn. I’m going to write what I want to write. I’m going to do my weird crafts. I’m going to do the things that nourish my soul even if that means I’m a large woman belly dancing in the living room. If it doesn’t nourish me, it’s gone. There will be some changes. Some will not agree with my choices and some may even be hurt by them. I’m done trying to make my soul fit in a box. I’m done making the mountain top my only goal. I don’t feel good labelling myself or closing myself into a space. Some really need that to feel safe and to grow. There’s nothing wrong with it. Just not for me. I am expansive. I am limitless. I am more than the surface you see.
I am adrift in the All That Is, and I go where I am willed.
"My disease is progressing. It's getting hard to cope."
"Oh my. What do you have?"
"Oh. Well. That's just silly, you just need to get moving again, you'll feel better!"
Now I feel silly for having even spoken.
Fibromyalgia is not just pain. I've struggled with this post. Rightly or wrongly I have been diagnosed with fibromyalgia for 11 years. I never wanted to be the fibro poster child. I never hid it and once in a while I'm moved to post about it, but preferred to let it sit in the background. I've tried a few ways to explain what this monster is, to varying degrees of success. Most commonly I am ignored. That is for a few reasons I'm sure. Answers that run from not wanting to hear the bad stuff to just being tired of hearing about it. People who live with chronic illness are known in the media as being huge complainers. If you have a sexy diagnosis of Multiple Sclerosis or Lupus, diagnoses that are well accepted by the community, or if you have something new that no one's heard of that you can teach others about, then you are heard.
Sometimes I believe there must be something wrong with how I present myself. So many people discount this huge thing going on in my body. Twice I've been in a position where my diagnosis was largely ignored as me being whiny until someone else in my circle of people was diagnosed similarly. It's as if my experience is somehow invalid. I've learned to expect that from the medical community, especially emergency services (don't get me started on the time EMS told me I was lying or the multiple times I've been told I'm a drug addict). That's frustrating enough, but it's worse when it's those you allow close to you.
People with chronic illnesses speak loudly and often. No one can see the battle we fight every day just to breathe. Medical professionals often don't have a reason why your body has decided to break down. We have to almost scream to get noticed, and then that very screaming is considered evidence that we're unbalanced, it's all in our heads. That reaction leaves me feeling guilty every day. Why can't I get out of bed at a "decent hour"? Why can't I just walk there, it's only a few blocks? Am I a good mom? What are my kids seeing and learning when mom is always sick?
Like most people, I've learned ways to make the world work around all my stuff. We all do it. Healthy and ill alike. We create patterns and habits around preference, finances, fears, and dreams. My world looks different because of my illness. If I were healthy I'd be labeled eccentric or lazy. Because I'm ill others feel they can judge me and my choices. It feels like they are looking for a way to tell me it's my fault. When someone is sick we look for reasons and therapy. Cold and flu are viruses, bronchitis is irritation or bacteria. But this has no reason, nothing to blame it on. It is easier to blame the person for bad things happening than to accept sometimes life happens.
Fibromyalgia hits each person differently and to differing severities. I've often said there is no one big answer and cure. There are hundreds as varied as the people who have it. For me, the pain, while no easy thing is the least of it. Fibro pain centers around 11 groups of tender points generally near joints in the soft tissues. It aches like arthritis and flares upon over use the same way, but is actually more painful. It's not painful enough that you can't learn to cope, but enough to make you exhausted with the coping. The pain moves around. Most people with fibro have one or more places that are always a problem but then the pain in the rest of the body comes and goes almost at a whim. On a normal day my pain is about a 5. That is half way between no pain and pain so bad you break your teeth clenching. When I take the right amount of the right medication I can get it down to about 3.
Think about that for a second. The average run of the mill non migraine headache is about a 4. A stubbed toe is like 7 and then aches at a 2 for a few days. So your stubbed toe is a person with fibro's best day. Imagine walking around all day every day with 20 stubbed toes and nothing you can do will fix it.
The pain is also different. Normal touches that shouldn't hurt do. A tap feels like a slap. Sometimes rough clothing hurts your skin. Sound which shouldn't "hurt" can cause physical pain. For me it's sound behind and to the side, even low level sound. The timbre of my husband's voice often makes me cringe. I back myself into a corner so all sound is in front of me and constantly tell people to turn it down. Bright light hurts more than just my eyes. You'll see me with sunglasses even on cloudy days sometimes.
This unremitting pain and exaggeration of stimuli is caused by my brain misreading the signals. I cannot force my brain to read them correctly. There is no behavior modification, or neurological therapy that will change how my pain centers experience pain.
Like I said, this is the least of it for me. I have learned to cope with the pain. I actually have a higher tolerance than most because my body has been trained that extreme pain won't kill it. I don’t like pain and will cry out like anyone else but my body has ceased catastrophic systems failure that high levels of pain cause. That said, it's still not fun and I'd give much to not be walking around like an open sore all the time.
Next, like most neurological issues, is brain fog. It's hard to describe. We all feel funky at times, lack of sleep or need that first cup of coffee, but this is different. I can only tell you what I experience from the inside. I will sit on my bed because I need to get dressed. I know this has to happen. I can see my clothes. I can't tell you if they're clean or not. I might not remember the name of the color. I will hold my jeans in my hands thinking, "How do I put these on? I need to put these on…" Every task during this time takes a lot longer and leaves you feeling exhausted and frustrated. When I say I'm in a fog, I mean it. I won't be any good to anyone. It really is like standing in a grey mist, sounds muted, vision blank, even the air feels heavy. Once in a while if you wait you'll catch a glimpse of reality. A bright spot where you know the brain works but can't quite get there. There is no medication or regimen for this.
The thing I hate the most is costochondritis. It is chest pain near the heart. It's actually an inflammation of the muscles around the ribs where they connect to the sternum. It feels like a lead pipe going the center of my chest to my back. Movement hurts, especially changing position, anything that ups the breathing rate makes it worse. Breathing, talking, even eating are especially hard. My pain hits 9 easily during these episodes. For years I had no idea what it was. No doctor could tell me. I'd call in about this horrible chest pain. They send me to ER, ER rules out heart, accuses me of just wanting drugs, occasionally gives some to me for comfort, and sends me home.
Restless legs is my enemy. I can't stop moving. It's more like restless body syndrome. I’m always bouncing, moving, twitching. To stop actually hurts even as the exhaustion of the constant movement sets in. If I spend time to think about it, I can make it stop, but as soon as I am concentrating elsewhere it starts again. This makes bedtime dreadful. Worry over shaking the bed and waking my husband, taking hours to not get comfortable and waking up frequently only to have to go through the same process of flopping like a dead fish to get to sleep again. Thank gods there is a medication for that…when it works.
Sleep. Sleep is my frienemy. I love sleep. I need it so badly. I am constantly tired. On average I need about 10 hours of sleep to be functional. But then I oversleep and miss things that I felt were important for the day. It takes an hour at least to even try to get up. It takes 2 to fall asleep. Sleep aids do and don't help. The pain medication wears off before the sleep medication, which means I wake up basically paralyzed in pain. Not fun. Sleep is where people get the idea I'm lazy. I keep crazy hours because I work nights, then I can't sleep until the kids are off to school then I can't get up until it's almost time for them to be home, then I didn't get enough sleep so I'm not at my best, it’s a vicious cycle and leaves me basically a vampire. I've heard many "jokes" over the years saying "If Susan can get up…" or "Let me guess, she's still asleep." If I could just be allowed to sleep the way I need to sleep without having to hear those things I would be a much happier person. It's exhausting to know what your body needs and then to deny it in order to fit what others are imposing upon me. I know that what others think of me is none of my business, but you can't always shut it out.
Raynauds is not strictly a fibro thing but it is common. Magic color change toes! Raynauds can affect toes, fingers, nose, and ears. What happens is stress or even a cool breeze or air conditioner triggers a hypothermic response causing the body to remove blood from the appendage. Your toes or fingers turn white or blue in response. There's nothing that can be done. It just happens. It does not cause permanent damage. It's more annoying than anything else. I’m cold all the time. It will be near 80 degrees in the house during those stubborn late spring days when you're avoiding turning on the air, and I will be using a heating pad on my feet. I live in shawls. Even working the mouse on my computer can set it off. Winter in Wisconsin may have been a mistake.
Migraines. If you’ve ever had one, no explanation is needed. If you haven't, no explanation will suffice.
Irritable bowel syndrome. Certain foods will make me very sick for no good reason. Extreme stomach cramps, constipation and diarrhea taking turns. This is largely controlled by diet, but can cause some serious issues if not kept in check. If an attack goes on too long it can cause sores in the bowel which can bleed. Bowels can also become impacted. So I'll stop there before it gets too gross. You get the point.
My fibro symptoms are resistant to medication. Some people get relief from various medications, diets, or natural medicine. I get so tired of being told, my best friend did this, or I tried that and it was great! Each person is going to react differently. You don't know that I have or haven't tried this or that or that it will work for me. I have been on many medications from weed, nerve mediations. Only one has had any effect. However, that one medication only helps with a small portion of all I experience. I watch what I eat to a point (I still like food). I'm into yoga and tai chi and belly dancing. But the symptoms are pervasive and all encompassing. And it's getting worse. I don't know yet if this is a random cluster flare up that happens or if my disease is truly progressing. It's taken from me energy, thought, ability to do basic things like grocery shop, it's even taken the sun. What else can it take from me?
I still feel silly. Like it's all in my head. Everyone seems to think it is, right? But that's the reality. My disease is progressing and there is nothing anyone can do to fix it. I will have more pain. I will have more fog. I will have constochondritis more often. I will need even more sleep.
But all I need to do is get out there and move some more, right?
Susan is a writer and artist by day, a child and pet wrangler by night, and occasional crazy person on the weekends. She walks the path of a Siedr and strives to grow day by day.