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?
:Jump up and down, do a little dance, sing a happy song, one of the rare glimpses into the world of my writing I offer up a free story just for you my wonderful fans.
DISCLAIMERS: 1. This story is for a HORROR anthology. It is goryier than my usual work and has some difficult themes (well admittedly all my work deals with difficult themes I just treat it differently in romance/fantasy vs horror). This is a graphic look at homicidal insanity from the inside.
2. This story has not seen the love of an editor yet. THERE WILL BE MISTAKES AND TYPOS. This is normal. ALL work needs an editor, even when written by an editor...or rather especially then. I am a special snowflake, but only to my family and friends who love me. To the rest of literary world I need editing just as badly as anyone else.
3. This story will be published in the upcoming JEA anthology Fata Arcana. Each of the stories is based around a single Major Arcana Tarot Card. I got THE MOON: The Moon indicates that things may seem somewhat confusing to you now. You may find it hard to understand where you are coming from, much less what others are thinking and feeling! You need to try to sit with the uncertainty, don't try to force things or people to do things before they are ready. This card is the "Pisces" of the tarot deck.
Without further Ado, I give you:
Cyndee in Lunacy
Grey, grey and more grey. A hundred shades burned everywhere she looked. Never quiet white and never quite black. Color ran and hid in the corners until it was just a mirage; a memory of a better time. Cyndee frowned in front of her antique, full length, mirror adjusting the long platinum strands of hair wishing she could color her hair or find something other than grey to wear, but pigment ran dry in this world, faded as everything else. Besides, it was better to blend in.
Blend in with the crazies.
She wasn’t quite sure when it happened. She knew the world was different long ago. There was color, there was laughter. Voices and screams in the night didn’t keep her up long dark grey hours until the pale grey of daylight filtered through the dusty blinds in her room. It was as if the apocalypse happened, the world turned upside down, and she was the only one to see it.
The truth was revealed to her slowly. Flashes here and there until she was convinced for a short time she was looney as a toon. Slowly the world as it is filtered in until all she saw was reality. Death and decay hiding beneath a veneer of grey paint. Color leached from the world as if it never existed. Frightening monsters lurked in shadows looking for anything…anyone different. Strange animals stalked the streets preying on the unsuspecting, the old and the weak. People wandered to and from meaningless jobs like zombies and everyone she talked to expected her to pretend it was all okay. Even Television shows insisted on the old reality, trying their best with script and myriads of grey to convince everyone nothing had changed.
“…joining us now in Olde Towne East, correspondent Matthias Dulaney. Matthias, what can you tell us right now?”
She turned to watch the screen, as colorless as everything else in the world, while the news casters chattered on. Old Towne East wasn’t far from her. Maybe a block or two. It was a hodge podge of dilapidated old buildings owned by either low income housing or yuppies actively fixing them up. The man on the screen was pointing at the carcass of a homeless man…or woman. It was hard to tell. The body had been flayed and field dressed, meat and limbs hacked off like a butcher would do. It wasn’t a bad job. If she didn’t know better she’d say the ropes and knots could have been her work. Still…gross. She shook her head and watched.
Towards the end, while he was questioning police, one of the baahcula’s ran past. She made up the name herself to describe the blood thirsty giant rams that infected the city. Big as men, shaggy and dirty, with bloody teeth always dripping some nasty mix of drool and whatever they ate last. Their crazed eyes and mewling sounds disturbed her to the core. Didn’t anyone see that? The newscasters, police, even the bystanders noticed nothing and looked right past the monster with a glazed look.
“Sheeple,” she muttered before turning it off.
She opened her fridge, the light flickering from some short she hadn’t been able to find yet. There wasn’t much. She would have to hunt again today. Food at grocery stores was like something out of a movie. All optical illusions, facing, and plastic. Sure, some of it was edible, but it was as leached of life as color. She learned long ago that hunting and foraging was the way to go. Not only did it taste better, but she wasn’t sick like everyone else. Sometimes she theorized they drugged all the food and that made everyone complacent and lost in the past.
“Don’t go too far down the rabbit hole,” she admonished herself with a smile, walking to the back room to gather supplies.
She threw the duct tape rope over her shoulder crosswise across her body. The rope was hand braided by her on long nights trying to keep from screaming back at the endless moans. She checked the edge on her machete looking for nicks and making sure it was sharp enough to cut through bone. She prided herself on a clean kill. A tranq gun would have been great, but she had trouble convincing the deluded store owners it was necessary for survival.
Once she tried. Once she spent hours talking to a gun store owner trying to convince him of the truth. Nothing she did convinced him. In the end she left in tears wondering how long this good man was going to live. She truly cared about him and his miserable life, but he called the people. The ones, that for whatever reason, wanted everyone to see the lies. She spent the rest of the day running from men with smiling masks made of skin and preternaturally clean, light colored, jackets. Ironically that was the scariest thing about them. What exactly did one have to do to stay that clean in a world of dirt, gore, and decay? She shivered just thinking about it.
She donned her Alice in Wonderland baby doll dress with the puffed shoulders and the micro skirt that flared almost a foot out with the help of a petty coat, her knee high zippered boots, and thigh high stockings. It seemed ridiculous, but the dress was made out of some stain resistant material. Water and blood beaded right off, and with such a short skirt it was only prudent to make sure her legs were fully covered. The outfit had the added benefit of being easy to run in, and full mobility of all her limbs.
It was time to go. Get this unenviable task done and she could enjoy the rest of her day. Well enjoy it as much as one could enjoy anything in a grey world.
Five flights down. She looked down the kaleidoscope center of the winding antique stair case. Once it would have been beautiful. The sun shining on polished wood banisters, pristine paint a stark relief. Now it was dirty, creaky stairs worn and bowed in the center. Rat holes and spiders the only decoration. She made her way down wishing she could have seen the building in the nebulous before time.
Outside the main doors, barely on their hinges, she staggered and fell back against the brick. Dizziness overcame her and she was rewarded with a rare flash of insanity. For a moment; just a moment, the street was filled with people. They were all dressed in the lively colors that make up a city on a busy day. Smiles, laughter, music, talking, new cars and old cars side by side on a busy street intent on their destinations. Children playing hopscotch while grandma's and elderly aunts looked on from porches. She could even smell the long dead peach roses next door suddenly back to life.
It threw her off balance, and for that moment she wasn't quite sure which world was real. The people started to gather around her in a loose cluster, all of them had horrified looks on their faces, one young man had his brow scrunched up in worry an arm reached out to her. There were gasps and murmurs about gore on her dress…
And then it was gone.
Reality came crashing in, and she found herself surrounded by tired looking pale zombies who didn't quite look at her. They listed as one to the left. Taking a breath she stomped hard and growled at them. They scattered, grey tattered clothing trailing behind them.
"What the hell was that?" she muttered and stole away to the alley. Beasts didn’t like crowds. They cowered in the shadows and attacked you from behind. It was the best hunting ground. In the dark alleys you didn't hear the screams as Baaculas attacked innocent people. You didn't have to see the rare face of a smiling child taken by the dark. Even sheep knew enough not to wander here.
Rusted metal industrial trash cans resting idly by condemned doors made shadows and hiding places. The stench of rot permeated the air. Behind her someone screamed. She spun in time to see a Baacula taking down an old man. It looked up at her, blood oozing down its fur like rivulets caught in time. She decided now was not the time to intervene. She backed up a few steps before turning and running, zig zagging through forgotten yards and the between spaces always left forgotten away from prying eyes. If it followed, it should not have been able to track her. She could hear the frustrated howl in the distance and knew she was safe…for now.
On with the ghastly business of self preservation.
She found herself a nice little hidey hole between two back door stoops. Across from her was another. If anyone came out that particular door, they'd see her, but she was hidden from everyone else. She smiled reading what she could of the rusted out sign on that door. Police. What a joke. No one would be coming out of that door any time soon. Baaculas had long since taken over any enforcement or protection strong hold. Maybe Baaculas were how the people kept order. Scare everyone into submission.
It wasn't too long before one the grotesque cows came galumphing down the cracked pavement eyes red and steam coming from a well chewed nose. It was big. One of the bigger beasts she'd seen. Normally she wouldn't have tried, but she kept thinking, this one would feed for her a good month or more. She wouldn't have to do this again for a long time if she managed. She didn't even think about how she would get it home and store the meat, intent only on the kill. All other problems could wait.
She watched it. Studied how it moved. Gauged speed and size. Judged distance. Watched the long folds of leathery skin hanging off like ill fitting clothing. If she could grab one of those, she could, if she timed it just right, propel herself up onto its back. From there she could make a clean kill by slitting the throat. She gathered herself up on her haunches ready to leap and waited for the last possible moment. It was almost past her.
Her honed reflexes did their job. Without even much thought, she leaped, catching more air than should have been possible, gripping her hands in its skin. Her feet barely touched ground before lifting off again, pulling and lifting herself up its back. Her feet found purchase in another fold of skin and she pushed off scrambling up high enough to grab a tuft of fur at the top of its head. The beast bellowed something fierce and tried to dislodge her. She nicked its neck in her first swipe. She had to get the jugular before it had a chance to fight too hard.
The beast slammed its back, and her with it, against the wall, making as much noise as possible. Poor, sad, beast. It had no concept that no one would come to help. The second slam made her head bang against the brick making the world swim for a moment. It was long enough for it to reach behind and drag her around, leg first. She was dangling there by one leg when she heard the warbling bleats of the Baaculas. The beast dropped her and backed up a few steps. There was a pack of them, staring at her, drool making their chins moist.
Good luck for the beast. It might live another day. She, on the other hand, had to get out of there fast. She got to her feet slowly, waiting for them to descend on her, but all they did was watch, and bleat…and drool. Adrenalin was her friend. She managed to feint left and then make to the top of the stoop on the right. She bounded over to the trash can, it's rubber lid closed on one half, and from there to the ground right behind them. She ran, the maze of between spaces coming to life in her head as she raced. They gave chase for a short while, but she kept going until the only sound was her labored breathing and blood rushing in her ears.
So much for a month's worth of meat. It would be a long time before a score like that came along again. Giving herself a moment to calm down she rested against one of the dirty walls. It was…moist. If her side didn’t hurt so much she would have retched. As it was she choked back bile. Who knew what manner of liquid was decorating the walls.
It was only a minute later, maybe not even a minute, but she heard movement to her left. Checking the grip on her blade and stretching her limbs to make sure they were ready she slowly eased out into the ally. She had to find food fast or she'd starve tonight and who knew when the weather would be right to try again.
A little one, the size of an actual sheep lumbered about in the shadows. Wooly white fleece and little black feet and hands stuck out like a sore thumb in the sea of dirt the city called alleyways. It was almost cute…until it turned around. Cyndee almost let it go until she saw the face. Fangs and bloody drool slid down its face reminding her what it would turn into…what it had already become. Something in her snapped. Normally she didn’t bother with the little ones unable to tell them apart from children, but this one already likely covered in its first kill broke some small part of her.
"Small," she said to the wind. "But at least I'll eat. And at least it won't kill again."
It started to back away, but she lunged, her reflexes faster than this small beast. It only took a moment. Much faster than it should have been, but she wrapped her arms around it and slid her knife along the throat. Warm, fragrant blood, black as oil, smelling of filth poured down her arms as the first few drops of rain started to fall. All the better. The stench would be washed away. The beast didn't scream, didn't utter a sound. It only stared, wide eyed while it struggled for breath. A single shudder was all the fight it had before the head went slack and the eye no longer saw. The rain picked up and she shoved the whole body in her bag figuring it was small enough to butcher at home.
She moved through the streets like a ghoul herself, back and head weighed down by the rain and her inky bloody bag. She wasn't as far from home as she thought, and found herself back at the old staircase in less than a mile. Even so she was drenched like a drowned rat, and felt not much better.
Alone in her apartment, closed off from the world in her bathroom, she emptied the bag into the tub and began the grisly task of breaking down the beast for meat. "At least it's tender, even if it doesn't last long," she sighed cutting through the velveteen meat. It didn’t' take long before it was cut, packaged and stored. She saved a hunk of ham to boil into soup for dinner and threw the head in with the kitchen trash. She showered in part to clean herself and in part to make sure all the black blood went down the drain. She normally didn't do this at home. Too messy.
Showered and changed, the apartment fragrant with herbs and meat she finally relaxed and turned on the TV.
Matthias Dulaney, investigative reporter extraordinaire was on the screen again with his arm around a crying woman. She wore and OTENA t-shirt, either proudly a part of the Olde Towne East Neighborhood Association, or not caring what thrift store shirt she had on. The nearby police station was behind her. She held up a picture of a beautiful boy with bright shining eyes.
"…Please if you know anything call the number," she pleaded. "Brandon is only seven years old and diabetic. He needs his medicine!"
"For those just tuning in, this is Matthias Dulaney live, once again, in Olde Towne East. Seven year old Brandon White is missing. He was thought to have been taken when he wandered into an ally near his home. Please call 1-800-The-Missing if you have any information…"
"Some people," she muttered stirring her soup. In this world you should never let your children out alone. Hell you should never have children in the first place these days.
There was a quick knock at the door making her jump before it opened and Nick walked in. "It's just Me," he announced.
"You scared me!" she laughed at him and brought her attention back to the stove. Nick was one of the few people she could stand to be around. He was a little nuts like everyone else. He sure didn't see reality, but he saw more truth than most and didn't insist she'd lost her mind. He probably thought she had, but he never put in her face. Besides, it was nice to have company on the long nights. With him she could pretend she didn't hear the screams in the darkness. He also sometimes brought her fresh fruit and vegetables. How he acquired them she didn't ask afraid of the answer.
"Did you hear about that kid?" he asked glancing at the TV while the famous Mr. Dulaney rattled off what the child was wearing that day and again how to contact the police.
"Yeah," she sighed. "It's too bad. He was very young."
"So you think he's dead?"
"In this world?" she looked at him mildly.
"Point taken," he remarked walking over and grabbing a spoon out of a drawer. "Whatchya got cookin'…good lookin'." He flashed her a boyish grin and she laughed.
"Soup," she answered while he helped himself to a taste.
"Mmmm, that's good. How do you do that?"
"It's all in the meat," she laughed. "They may be ugly as sin but they sure taste good."
"Moooooooo!" he cackled struck by how silly her comment was.
"Well go look if you don't believe me. Its head is in the trash." She pulled out a good chopping knife and cut up some wild tomatoes she'd found a few days before.
"You have its head?" he crinkled his nose. "Here?"
"I don't normally bring them home, but it started raining," she shrugged.
"In here?" he pointed at the trash with a mischievous smile.
He pulled back the lid and stared for a few minutes completely silent. Hadn't he ever seen one of the beasts before? It was possible she supposed. Most didn't. He put the lid back on slowly and turned to stare at her and then the pot. He started to shake and all the blood drained out of his face.
"Nick? Are you all right?" she asked. He shook his head violently and started retching. "Oh my god, Nick, what's wrong?" She moved towards him with the knife still in hand. He backed away so fast he stumbled over the furniture. "Are you sick?"
"Yes," he managed.
"Why don't you sit down?"
"N-no, I think I need to go home now," he started for the door.
"Are you sure?"
"Yes," he said running for the door and slamming it open. "Home!"
"I'll save you some soup!" she called after him thinking some broth would be just what he needed. She could hear his retches echoing down the hallway. Poor guy.
She settled in to an old movie and a bowl of her hard won soup.
It was maybe an half an hour later when someone knocked on her door. Who in the hell? "Nick? Is that you?" she called before getting up. If she didn't know them they weren't getting in.
She heard a cough and then, "Yes!"
"Oh good," she got up and ladled a cup of just broth. "I have that broth for you—"
She opened the door and startled so bad she tossed the cup behind her in a panic to back up. Nick was there, surrounded by baahculas and People in white coats.
"Cyndee? Ma'am?" one shouted at her as Nick was thrust to the side behind one of the slavering beasts.
"No!" she screamed as hands reached for her. There were too many of them. She wasn't prepared or armed. "Let me go!" she pleaded as she was tackled to the ground. Knees pressed the side of her head and her shoulder to the floor with bruising pressure. Noise was everywhere as hooves and booted feet charged into the room. Shouts and growls surrounded her in a swirl until she was unsure if the beasts spoke and the white jackets growled or vice versa.
One of the beasts opened her trash can and screamed. Words seemed to form from the fanged mouth as spittle sprayed over all that were near. None of them noticed or flinched. There was a pregnant pause followed by her being unceremoniously lifted. Beasts held her arms while the people wrapped her up in bindings like a reverse coat.
Cyndee screamed over and over begging for help. "Nick! Help me!" He had to be there somewhere. If there were two of them she might have a chance. "Nick!"
His hands came into view and he took her face in both of them gently, shocking her while her arms were pulled uselessly against her and her feet bound. "I am," he said softly with real tears in his eyes. She kicked and screamed and struggled as they carried her away, not caring if it was useless. If she was going down, she was going down fighting. They half hurled her onto an ambulance gurney and strapped her down until she couldn't move. A pin prick on the side of her neck made her flinch against her bindings.
The world slowly went dark and the last thing she saw was the head of Columbus's own Matthais Dulaney of Channel Six getting out of his van across the street and the zombies of the city crowding around. For a spit second before all went dark they looked like real people and the world was alive with color.
A man in a suit with a long trench coat and a badge hooked to his belt held a hand over his mouth while he looked in the trash can. The apartment was sparklingly clean if old and ill maintenanced, but that was normal in this part of town.
"We're going to have to show the mother," his partner said quietly next to him.
"At the morgue. She doesn't need to know this is all we have."
"I don't envy you," said a uniformed officer shaking his head, holding his mouth in a grimace to keep from getting sick. "I don't know how you do it."
"Do what?" the first detective asked.
"Look at this stuff every day."
"This isn't every day."
A grim faced woman in jumpsuit with the words Medical Examiner and CPD emblazoned on it reached in with gloved hands and carefully packaged the head of a little boy known as Brandon, a red stained white coat, and black gloves and shoes.
This year as I took my children and husband on the daunting drive across the Midwest, over grand rivers and endless plains, in rain and sun, and countless bathroom breaks with required forays for truck stop random goodies, I found myself singing this tune anticipating the lovely little woman who looks and acts half her age in a delightful way. Hearing her soft southern accent and smelling her perfume that I've never forgotten no matter how long I spend away.
It seemed to take forever and yet only an instant as I pointed out landmarks I remembered and argued with my husband about accuracy of the GPS now that there was construction blocking an important turn off. A few random work calls because upper management never truly get a day off of anything, my children best behaved they have ever been on a long car ride, and by the time we hit city limits it didn't seem to take quite that long.
Of course a stop along the way to see my brother helped too. Packed with cheese for both our loved ones, I couldn't wait to get to either place. My brother had the good sense to live directly on route between our home and my aunt's. I didn't stay long, but to hug him with my own two arms was a great gift. I don't have words for what that meant to me. I left him with cheese curds done up only the way a Wisconsin factory can make them fresh, and threats of coming to visit me or else! *Hint hint* Next time. Next time there'll be time enough to say all the things and laugh at all the jokes.
Hundreds of miles between there and here, the home of BBQ and Jazz beckoning me like a dream of all the best childhood memories. There I found her there waiting for us, arms open. Her home looked like it always had, maybe a new counter top and stove, maybe a new couch or a new color on the walls, but still, most emphatically Carolyn. A map of her heart, and a reflection of a life well lived. Her walls and surfaces were covered in the most amazing collection of family heirlooms and bits from her world travels. I was hard pressed to find very many countries that weren't represented. Treasures new and old from a crafty niece found their way into the mix. Recent paintings I had made gifts of and an old hand sewn and beaded leather pouch from my first decade of life hidden in among family pictures.
There are always new things at my aunt's, the ebb and flow of life changing like the ocean reef she loves so much, but always the much loved art and things my sisters and I always remember. The mantle clock that plays Westminster chimes owned first by our great grandparents a much loved shadow of its former self. No matter how old, or how time has aged it, or even state of disrepair, there will be a war over that clock on a date I pray will be distant yet. I would sleep in the middle room, sometimes alone, sometimes sharing with a sister, the clock right outside the door and listen to sound of time passing through the night. Bum Bum Bum Bum every fifteen minutes.
I have a deep love of Kansas City. I've lived in other big cities. I know what they hold. I would probably lose my mind in the maze of buildings and the pace of a thousand things to do should I live there, but I always feel drawn back to this place. Drawn to the love of my aunt, drawn to the childhood memories of playing in her yard, picking her tomatoes, and a hundred adventures with a woman who always seemed to have a friend everywhere she went. But I'm also drawn to the feel of midtown and Westport. You can see the lights of the Historic Plaza from her home, the feeling of jazz all around. That smokey bit of good BBQ, like a sax singing you to sleep. The tinkling of laughter through open windows as the sun set, a good melody on the piano. The pulse of life a sedate beat wafting through the air. The spray of a hundred fountains, water blue for their favorite sons, the KC Royals (World Series Winners!), like a soprano softly finishing the chorus. There are lights like any large settlement of humanity, but something about the warm air and the early sunset mute them until you feel part of the air, seamless and calm.
As always BBQ is involved in our trip. Either one meal or a large tray that feeds us for weeks, but one way or another, when we see Aunt Carolyn, BBQ will happen. There's a whole culture to KC BBQ. An odd mix of greasy spoon, cafeteria, and sit down. Some are upscale and some are nothing more than holes in the wall with one or two tables. The best BBQ is always in the older neighborhoods, plain chairs and tables found in mom and pop diners from the 50's, and never fancy. Just your average inner city corner grill that serves fish and wings or philly cheese steak or any number of regional foods. In KC you go to these little, old, less maintained places and find the food of your dreams. Sauce sweet and smokey, or spicy and tangy, or my favorite, both at once. Smoked meats piled high, the smell greeting you down the block of stacked brick buildings and absent grass. You walk down a cafeteria like counter yelling out your order to the cooks, cutting meat right in front of you, get your beer or soda and find a table where someone nice with a dulcet KC accent makes sure you have enough sauce and drink.
My children are mixed. The recent less than absent race relations in the US always has me edgy. I worry how my children will be greeted. I worry how I will be greeted. I worry how we'll be greeted when seen together because their glowing dark skin is so obviously different from my sack of flour and freckled complexion. I was amazed that no one paid us any mind. In Ohio we were stared at often. In KC all the neighborhoods seemed mixed and no one cared, we were just people. You respect them, they respect you. I don't know enough about the issues in KC government or society to tell you if this is what everyone experiences, but I was comfortable and greeted well by all manner of people.
This trip was a little ambitious for me, with my health being what it isn't, but still, wonderful things happened. Sea Life Aquarium was beautiful. The staff friendly and informative and always seemed to have time to stop whatever they were doing to tell you with such excitement all about the exhibits. A collection of rare animals, rescued and rehabbed animals, and animals from their world known breeding programs greeted us, seemingly just as curious about us we are of them. An octopus sucked against a window half hiding an eye and blinking closed every time she was caught watching. The missing link between sharks and rays strutting her stuff for all to see while she waited to grow up enough for a mate. One had already been chosen for her. A turtle patrolling and watching all that came by. A sea anemone that would hug you if you poked it between the spines while horseshoe crabs nestled in close. Sea horses bright and dark, large and small, happily going on with the business of increasing their numbers.
Another staff member herded the worshipers of all that goes bump in the night down a pitch black turn then whisked my daughter and I out. He showed her the back staging and the sets still under construction or repair and talked calmly the whole time. Embarrassment quickly faded as he declared we were the third ones that night, and they had only been open an hour. Kindness on a night of fright. Well trained, compassionate staff. That's what took a famous haunted house and made it truly world class.
We watched the opening pitches of the final game in the World Series while sitting at an old wooden bar table that wobbled, with sticky floors and chairs a decade or two past their prime, inside a true flea market, not a tourist attraction, to eat world class burgers. Food Network had featured the place, and no one cared, or maybe they even enjoyed, the dilapidated décor. Packed wall to wall, standing room only, clusters of beer glasses in hands around TV's to listen to the National Athem and some singing along. The noise was epic, but unified in a way only sports fans all rooting for one team can give you. Everyone from doctors and nurses, to cooks and wait staff, to business men and women, to children and elderly all wearing Royal blue. A sea of a city united, even non-sports fans, celebrating as one. Fireworks and honking horns filled the night. Even a few unexpected late hours in the ER for something easily fixable did not dampen the feel in the air as KC won her title.
Of all these amazing things luring me in like strains of jazz and BBQ smoke wrapping me in a hug, my favorite moment was sitting in front of a Samhain fire, sticks of incense in hand talking my aunt through a basic ritual in remembrance of loved ones lost. Explaining to her what that night was all about, and feeling the intimacy of a thousand emotions as she remembered those that have journeyed on. KC has a million things to do, all of them interesting, most of them culturally enriching, most of them fun, but it is her I seek. It is to be in her presence and talk. About life, love, fond memories, struggles, her adored shi-tzu begging to be pet and Westminster chimes flowing through our consciousness like smoke until we didn't even notice how many times the chimes sang at the top of the hour. It is making her my famous butternut soup and watching her enjoy it. It is holding on to her arm in a haunted house and listening to the history of all the places she took us. Fond memories of family friends she brought into our lives and her adventures with Uncle Dr. Jim in those very places we walked.
Not everything planned happened. In a way I'm ecstatic about that. It means more thinly disguised excuses to be in her presence, to share her life for a few more days. It means we can all pretend I have more reasons to go back again and again, when I only needed that one. Her.
Aunt Carolyn you are adored. I will always come back. KC is as much my home as Point because you are there. Thank You for another trip of memories and laughter and love.
I'm going to Kansas City, Kansas City her I come. You got some pretty little women there, and you are the most adored one!
In the history of the world very few mother daughter relationships go without incident. It seems as daughters we’re trapped between desperately wanting this woman’s approval of us, and needing to be our own people. Breaking away invariably leaves both parties scarred, and it is those scars that shape the relationship just as much as c-section scars, stretch marks, post baby feeding breasts, the extra weight in hips and thighs, and your very own belly button are a reflection of all it took to bring you into the world.
I find myself wondering why society puts such pressure on women to become mothers. It was very clear early on that my own mother had merely succumbed to this pressure and didn’t really want to be a mother. Or perhaps she liked idea of motherhood and being one of the two youngest in her family never got to see the reality. Well reality hit hard. It often does. I don’t think anyone is truly ready for their first child. It just happens no matter how much you plan and read and think you know. Suddenly you’re a parent and forced to figure it out as you go.
My mother’s dragons were insidious and slow. I don’t think anyone dreamed in the beginning what it was going to be like. To this day some of her very dearest friends remain ignorant of a large portion of what went on. As an adult I find myself referencing some of things my sisters and I deal with for our mother and they had no idea. Outside looking in I suppose. I always believed they knew everything. As much as I love these women I’ve known all my life it is discordant to speak with them now about Mom.
This woman, who I remember making bratzli’s with (a special swiss cookie), and reading Caldecott and Newberry award winning books with, a woman who knitted the most beautiful designs while I sat at her feet and learned about color and pattern, was very ill. Slowly, creeping up like a thief in the night, bits of her sanity were eaten away, pulled into a hungry void of mental illness. We didn’t understand how we could love her so much while she abandoned us so completely by never leaving her chair.
I am the youngest of three. My oldest sister was enough older that she took over as mom. She took care of Mom’s needs, Mom’s errands. She made sure I didn’t touch a hot stove. She was the one yelling out my three names and sending me to my room. I thought this was normal. I was an adult before I realized how very much she did…how very much Mom held her responsible for. That’s crushing for a 7yr old girl. My first word was her name, which were not sounds easy for a baby to make. Mama or dada typically are because they are the first sounds their little mouths figure out how to say. Mine was my sister’s name. A Juh sound.
Our entire lives was built around Mom’s naps, or telling my father when I stayed home sick from school I would hear her get up more than once during a nap to take pain pills, or going to the grocery store to build up her stash of candy that molded her into one of the super-heavy people you hear about on TV. My mother wasn’t like everyone else’s. She was big and soft, easy to hug, and sad all the time.
I’m not just talking depression, though that would have been life changing enough. In my early teens, not very long after my parents were divorced and both my sisters grown and out of the house, Mom starting hearing voices and having delusions. We were lucky. She could have become violent. It was still scary enough. It got to the point where I was afraid to talk to her. She lived a few hours away at this time, intent on going back to school. I didn’t like to visit her. It would be hours in her apartment in a large city I didn’t know while she napped, sleeping nearly 20hrs a day. My mom was gone.
Gone were the beautiful designs woven by lightning quick fingers. Gone were the hours of discussion about book plots and cover designs (any wonder I became a publisher, artist, and writer?). Gone was her beautiful voice teaching me old songs. Gone was the intelligent light in her eyes that was there no matter how sad she became. Late onset non-differentiated schizophrenia stole what little was left behind by the depression. I was in the process of becoming an adult and wanting her near so badly she actually moved back to our tiny town, but scared of dealing with all that a relationship with her would entail.
I ran. She was not the only reason I ran. There were a great many difficult life changing things happening then. Most my parents never knew anything about. Outside the family. At home. At work. Mom. Things were a mess and she got relegated to the long list of why I would never come back to Wisconsin ever again. I had $300 to my name and a friend a distant 12hr drive away who was willing to put me up until I could land on my feet. I actually ended up, struggling, crumbling, covered in road rash, wrenching my body up the cliff with bloody fingers and toes. I’m still not sure I’m completely on my feet. Are any of us ever?
My oldest sister left the country. That left my second sister to do the dirty work. I have never completely gotten over my guilt at that. I didn’t call Mom. I didn’t write. I had virtually no contact with anyone on purpose. I would hear about most hospital stays, but I was not engaged. I didn’t want to be. My second sister spent her adulthood being caretaker for this woman who looked like our mother but wasn’t. There was a lot of anger dealing with the depression, but even then there were sparks of who she could have been. By this time, even those were gone as knitting was left piled in the closet, tangled and undone.
For decades, life went on. This was the new normal. I don’t know quite when things changed. A good visit or two from my father and step-mother. Maybe it was the trip home for Dad’s birthday when all of us were there, and we three made our first attempt at a united front for Mom. But things did change.
My second sister, who had devoted so much time to the bodysnatcher in Mom got an opportunity to spread her wings. We told her to go with no guilt. It was time she got to do this. It also became clear Mom needed one of us. I stepped up to the plate. My sisters had both done their time. It was time I was the sister and daughter I should have been and take over. So I did.
Now I watch her dragons from afar, hiding behind walls of medication and doctor visits. Death kept at bay by a surgically smaller stomach that caused more problems than it fixed taking this once large woman to a frail grandmother twenty years older than her birth certificate. I was strong. Not taking her crap, not letting her manipulate me. I was hard, drawing lines no one could jump over. I didn’t want to love this woman in front of me. I wanted to do my duty so others could live and so that I would know I was there when needed.
Then it happened.
A tiny insignificant cell decided it wanted to live forever.
Tumors. The true immortal vampires of lore. All cells have an automatic shut off sequence. They die on time so other cells can be born. Cancer is when one cell decides to live forever and just breed, more and more of them sucking the life right out of you.
Mom found the lump in her breast, a part of her body that was a true mother, having fed and nourished all three of us. My walls and lines were all useless. I wouldn’t say the chip on my shoulder is healing, but it’s been worn smooth by this fight. My sisters do what they can from where they are in the world. I am not alone in this fight with her, but there are days…
I watch her shake with fear, her resting tremor getting worse as we walk through the doors to the cancer center. I hold her tiny bony hand that looks nothing like my mother’s while we learn all about HER2+, and metastasizing. I kissed her head as they wheeled her away to take her breast. My vocabulary grows to include the lexicon of chemo nurses while they bustle about in the ‘infusion’ room. I sit in hard plastic chairs with my own knitting trying to take her mind off all the tubes and the poison dripping into her body. I talk to the staff where she lives about side effects and just how poisonous her bodily fluids are now we have set out to destroy some mutinous cells.
Now I must face the possibility that her dragons are only lying in wait for the cancer and treatments to do their job, tenderizing her emaciated frame, before they devour her whole. Sometimes I wonder, is the spark truly gone or am I just blind to it, my own issues robbing me of clear sight?
Each new diagnosis, each new test, each new treatment I worry if this is going to be the one that finally breaks her. I wonder daily if that’s a bad thing. Cancer treatment is torture. I’m not saying don’t treat it, but if someone opts out, I don’t blame them one bit. As her daughter, each new bump or lump I find on my own body becomes a three doctor circus to rule out the possibility of my own renegade cells. Through it all she has been lucid and on the ball in a way I haven’t seen since I was a child. It’s cruel to get a spark of her back just when she enters into the most grueling leg of her journey.
I want to know, how much longer until the sun sets? I don’t want to miss a minute of it. I’m terrified of every second.
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.