I spent most of my time, googling the pain in my body parts. I’m shuffling around the house, my feet in large socks.
The intermittent pain is sharp and harsh. The chronic pain that just lays there seeking an answer is a low moan in my body. It reaches to my lungs crushing the carefree activity of breathing.
I can’t get a break from the pain. This is the longest I remember of having continuous pain that just won’t break. It started with kidney pain and that pain was brutal. Then the pain morphed into this continuous ache that just won’t recede.
It’s not the usual fibromyalgia pain, oh no. This is something different. This is my slow functioning kidney pain. That’s why I keep googling. It is by turns moving through my body. It was in my back on my right and now it is in my front. It makes me breathless.
I am so tired. I sleep at least ten hours a night. Sometimes I sleep twelve. Being sick is a “me-focused” activity. I hardly have time to talk with anyone else. I don’t want to speak with anyone.
I have great difficulty getting anything done. Nothing gets completed anytime soon, it all takes at least two days.
I sit still in my chair and no matter what position I am in: it hurts. My back hurts, then my thigh and my leg and before you know it, I am deep in the rabbit hole.
Johanna, who is my daughter, is the antithesis of me. I have always been the typical clean freak, always. I am also very organized. I needed to be, I was raising a lot of kids. All of those kids had appointments: school, braces, counseling, sports and then us as a family.
Johanna was a different child. She chose to live her life in a tornado, touching everything and anything and never quite understanding boundaries. She never developed a boundary with me, and of course, that responsibility is mine because I named her after me.
She fascinates me, obviously, I write of her often.
Something in me has changed. I’ve learned acceptance. All of the time that I wanted Johanna to change and for all of the time, I wanted her to be like me, were wasted efforts. She is who she is and who she wishes to be. She is perfectly capable of making those decisions.
Her life has been very hard on her. She struggled for more than five years to gain custody of her child. She was relentless. It was more difficult for her because she waits until the last moment to get things done. She gets them done, but often, not on time. It’s been eighteen months since she won custody – and finally – normalcy is returning to her life.
Her car is full of the debris of living. I’ve never seen her drive a clean car. She knows where most things are and she will produce it for you, you just have to ask. In fact, that is the thing with her, you just have to ask. She will give you anything you wish for, if it is within her power. Johanna’s superpower has always been love.
Her mothering is nothing like my own mothering. On one of her trips here to Florida, she told her boys to pack toys in their back packs. She packed everything else for them in the luggage. I know lots of mothers who are much more practical and would not allow kids to pack their own back packs. She believes it fosters independence and also, the kids don’t blame her if something is forgotten. I appreciate how she values independence in her sons. She also spends most of her time with her sons. If she isn’t working, she is with her sons. She requires a great deal from her sons and yet, she requires nothing. She is an unusual mother.
Part of my evolution this year is realizing that because I am frustrated with her, I judge her harshly. I realized that I needed to suspend my judgment of my daughter. I need to let her be who she is without my opinion encroaching into her life.
I wanted to see her, not my opinion of her.
Authenticity suddenly seemed more valuable than ever. I’ve worked hard to stop my own judgments from clouding my relationships. I was hoping that this work would help my relationship with Johanna.
It did. I am surprised at how much removing past emotions changes judgment. When judgment changes, being in the now becomes possible. This is what happened for us. Our relationship transformed.
Intellectually, I know that because people love to be right, they will create beliefs out of bad experiences. If I didn’t have fun at a picnic, I decide that picnics are bad. I may always dislike picnics.
They say that this is a survival mechanism, we have to be able to recognize danger, so our memory tells us what is bad. In this world, the one we live in now, we don’t need the same urgency that we did thousands of years ago. Our need to label what represents danger should not be based experientially. For example, a conman may give you a good experience while stealing your money. This world is so much more complex than the world that gave us fight and flight instincts.
If I didn’t understand trauma
informed care, I wouldn’t understand her story. She told me that she couldn’t exercise
because the harsh breathing evoked by her exercise brought her back to the harsh
breathing she experienced when she struggled against her rapist. When she heard the breathing coming from
herself, she would have a mini blackout and it always scared her. She could not exercise. She took long walks because, she could always
run away if she felt scared and she could always control her breathing when
walking. Her rapist was her brother, as
a child, she was often raped.
She noticed that she was not comfortable naked, she wanted to
be covered and wouldn’t go to bed without underwear. She felt vulnerable and oftentimes when in
the presence of others, she thought that she was in danger.
When she was breastfeeding, she had to stop as soon as the
babies were old enough to pull on her shirt.
It made her think she was being raped, oh hell, she couldn’t believe how
vulnerable she felt.
When she finally put it together and figured out why she didn’t
like exercising she was fully adult and couldn’t put it in reverse, the damage
She wondered if others suffered the same type of mental agony from their own childhood molestation and abuse. She read research once that said women often gain weight after being raped. As if the extra skin and fat will protect them from being raped again. Or perhaps it was because an overweight woman did not fit in with the sexy ideal of a woman, thus making her feel safer.
What did I
miss? What difference would it make to
this adulthood, this one, the one that you have right now? Did I miss a crucial step that would have
kept you from using drugs? Did I miss
some mysterious childhood mantra that would have given you more self love than
you ruin this, our lives, with the makings of a mad man? Drugs, drugs and more drugs. You know, smarter than others, a brain that
absorbs…why do you want this more than anything else?
I can’t stop
the questions, because I can’t believe you!
This all feels familiar, not quite a de ja vu’, more like a fuck da you. Who do you think you are? There is not another chance for you to fill your world with lies, because we call you, liar!
hurt. So much pain. You left no stone unturned in your rampage
through the lives of your loved ones. I
see the glass in your eye. You will not
see me again (as if you ever could). If
you saw me truly, this discussion would be void, it would not occur. But, you must see me first. This you have not done. Will you leave my life without ever having
known me? Will you remain a stranger to
the love of your mother? Will you keep
your journey lonely, without companionship?
We won’t let
drugs into our lives again. If that
means you don’t get to be in our lives, so be it.
I haven’t been any good at acceptance. I haven’t even been able to say that I can see my limitations. My self-identification has gone from “I’m strong.” to “I’m weak.” What’s wrong with me? Why can’t I realize that my life has changed and I don’t have a vote in how it has changed?
I can still be strong. I just need to find new ways. As for acceptance, I don’t know how I will get there. I’m still screaming and kicking and it’s been two years since diagnosis, the illness has been present much longer.
I do know this, in America, it sucks to be sick. Not only am I not healthy, but I am broke and overwhelmed with how financially disabling my illness is. I can’t wear make-up on most days and I certainly can’t function enough to work full time. No one wants to hear about my illness (not even my doctors). It’s always frustrating to be sick. America loves beauty and health and abhors the drag of chronic illness.
Every holiday extracts a huge price. I need a few days just to recover from all of the family festivities. It’s worth it, holidays are one of the things I can look forward to and enjoy completely.