Who Am I When I am Not Here?

I have been afraid to lose myself for a very long time. Every since the first seizures. Lupus is not a kind illness, invisible or not.

In fact, losing ME - my mind, my memories and my thoughts and being psychotic is probably my worst fear. Worse even than not having a family or living "alone." I can have a family of choice and I can create community... but I am terrified of the process of slowly losing my mind.

Over the years I have had help identifying more and more parts about this. One neuropsychologist said to me, "You need to have a sense of humor about these things. If you struggle you will make it worse. If you can laugh, you will find a way to make it easier."

Brains are flexible. They heal and re-wire. Just like hearts. Just like bones. And so I took him literally actually. I went into comedy. I did so much work with neuropsychologists (not just him) and I played games and I did memory games and tricks. And I realize that everytime I lose "spare change" I can get it back. Or it will re-wire. The losses are not forever. And even if they are, I can re-build. If I struggle and freak out about it, it will only make it worse - like lighting a grease fire fire under an electrical fire and throwing water on them both. Instead, I do what must be done to LOWER the stress and "cope"... go back to "square 1, square 0"... calm... I write notes to myself. I remind myself what works. If I don't have a strong short term memory, I allow it is OK. It will come and even if it doesn't, life will go on. Nothing inside is lost. And even if it is lost- in library school we learned that everything can be looked up and if it is written down, it is still available. It is STILL AVAILABLE.

I have faith that I can still find it all again. I breathe. This isn't what I WANTED. But it is what it is. Struggling against it would only label it and create an emotion of anxiety and stress and horror. Humor works better. Saying, "I'm a dork and forget your name" works better than freaking out when I forget names. Laughing when I forget how to knit or need a GPS or cannot spell... Saying, "I spell like a whore"... because I simply cannot remember how to spell. Some things are gone. Some will come back. Step back. Allow. Brains re-wire.

"It is my worst nightmare to lose myself."

"That isn't you." my therapist said.

She reminded me the way I often remind others. I tell them, "You aren't your job. You aren't what you make or what you wear." And she did that to me except she said it differently... She reminded me that I'm what I am on the inside... I'm the love I have made. I'm my SOUL. And this life is a terminal one for EVERYONE. We all die. Unless we die VERY YOUNG or in a freak accident we all suffer and lose our minds in the end. It will happen to us all. She pointed out that the only difference is - I have had to deal with it longer and have actually had time to develop SKILLS at calming myself and creating a type of grace (I don't feel graceful... but I suppose there is a kind of flexibility in how I rest and calm and soothe myself when I am not my best and how I grab on to life and sparkle all over in a burst of energy when I do feel my best).

She also told me a compelling story... about how we are all alchemists. And how we are here with a "life" and hold it like sludge in our hands. And all our experiences begin to press down and form into a rock and become polished and smooth over our lifetime. And over when we die and crossover into death do we "hold the philosopher stone." That's it. Those are our "life lessons"... the ones we came to learn.

I might never know the reasons I have been put here to have these experiences. I'm here to live my best. And sometimes I don't feel great. And I am sad. And other times I feel good and I can have joy. But I do know the she is right. I am my soul. And I have done my best. Looking back there are many times I have lived in fear. Over time I have lived more in love.

No matter what - I'm learning that is really who I am. I'm glad she reminded me. I really needed it. No one can make us feel connected or truly at peace but "god." The same way no one will ever make us feel really "beautiful" or "ok" in ourselves until we stop searching outside ourselves.

I'm still getting it. I say it, but I only "do it" half the time. I am my soul.

I hope I remember that most of the time it is OK to do what feels good and at the same time do what brings joy. And usually they are the same things. (I'll bet if I live with what resonates inside me they will always be the same thing).

Hospital Stays

Being in the hospital was the very last thing I wanted. It brought up old memories- being helpless. Being sick and not having a say in what I wanted - my ex leaving me because I was sick. My body not doing what I want. Financial devastation. And just monumental efforts to get back on track- and then that blow- called, "no- you can't have a weekend or read a book or knit or even visit friends - you will have IV's and medications you don't want and you will lose friends and you will gain weight and you will listen to doctors whine about how they want to leave at 5pm on a Friday but have to deal with you first..." and all the time you will hold your tears and listen to babies being born and announced and realize they are not yours. And your Friday is meaningless and will be for a long time to many people, especially that doctor. And wonder if you will ever have meaning again no matter how hard you try to make it.

You will think about a guy you tried to date who told you there was hope for a future and realize that he saw it through a lens of healthy and his life was not shattered. And you realize how much of yourself you held back. And how much you never told him. How much you blame yourself for being sick and not ever ever ever being able to get better. And how much you recognize that "just friends" is probably the best you're going to get. And how grateful you are that a few "just friends" stopped by and visited.

It is so conflicting. I see no future. I see no hope. I see nothing getting better for me ever. And yet, some days the best and bravest thing anyone does is just get out of bed. People can be so kind. They are.

Part of me wants to knit and be kind and continue forward. And the other part wants to stay in bed forever and not think about anything all because it is all just more loss. More and greater loss for the hoping and the wanting for anything to get better.

I have always thought I was hard to love. When my friends I have invested in come and visit me I feel grateful. And when they back away from me during my hard times I hope it is because I have hidden my invisible illnesses so well. And that they are only surprised or that they just don't deal well with hospitals or sickness.

Meanwhile- dealing with ME is dealing with someone who will have needs and who enjoys meeting needs. If they cannot come through for me or let me come through for them, it is not a relationship or a friendship.

I have a cat who needs me. I realize that as hard as I have tried to make a life here I don't HAVE to do anything. I don't even feel like eating but I must. This will pass. It always does. Life is like that. Hospitals and shocks to our system - they just do. I wish there were more control over when or how my body was going to behave and then how my EMOTIONS were going to behave afterwards.

I often feel I have done something very wrong to have ended up this way. Life wasn't supposed to go this way. It isn't. Tonight I will feed my cat. And tomorrow I will be brave and get out of bed. And eventually I will find my rhythm again. I don't HAVE to have "hope" for the future or "be happy." Those are someone else's rules and I don't have to follow them. I just have to live.