Tonight was a rough night. I'm getting over the surgery - the emotional part of it and the physical part. I'm able to take some short walks and even go to my neuropsychologist where we talk about life and how to deal with illness and cognitive challenges in getting my dissertation done.
I received notice that I'll be getting a VERY SMALL STIPEND for my dissertation next year. Not enough to live. So small it puts all the previous years in the crapper. I feel so grateful that this is the year I'm moving home. If I had held out for this amount I would have had to go on the dole long before now.
Yep- these times are rough -but ouch. It is deflating - horrifyingly deflating for me. I don't know what to do sometimes with the illnesses I have. And then some "well meaning people" and some NOT SO WELL MEANING PEOPLE come along and say bullshit - like, "illness is just an imbalance in your body- it is just a message trying to create and restore wholeness to your being."
And other people who say that the medical industry is just trying to create wealth on the medicines that I take (and some of my friends take. Now - I don't take some of my medications for their intended purposes. I don't HAVE say fibromyalgia or chronic fatigue syndrome-- I have other illnesses... but the illnesses I have are auto-immune and hard enough to deal with. They are NOT VISIBLE TO THE NAKED EYE and so I have a sense of feeling angry on behalf of men and women who DO have those illnesses. I have enough friends who do have fibro or CFS -they DO have a hard time of it. They ARE tired they DO feel pain. I get it.
Now-- one thing that they often do that I do not do -- they spend a large amount of their time discussing their pain... and well... I just don't anymore. I just CAN'T ANYMORE. I have come to the term that I will live in a certain degree of pain for the rest of my life. I just will. And it will come from my spine where it has stenosis, and my kidneys where they are slowly failing, and from other areas of my body where the auto-immunity is kicking me... like right now - I'm dealing with the crohn's - and YES IT FUCKING HURTS to have terrible constipation and then awful diarrhea and cramping. I just.. I generally don't mention my pain levels as much as my friends. Or the traveling neuropathic pain or that my eyesight gets blurry or I have "visual impairments" probably from the CNS hit that lupus gives me...
Often because I don't know WHAT IT IS FROM... but also - I just don't feel like talking about it. Sometimes I will mention the pain - but mostly I don't. I'll just say, "rough pain day" and leave it at that. But other times I notice that others feel a sense of camaraderie discussing their pain. And I give that to them. I will give them hugs and love and support if that is what they need. But I DON'T FEEL BETTER telling people about my pain - because it is so constant and so there with me. I know I live in constant chronic high level pain that will never go away.
I don't even medicate it unless it is acute post-surgical anymore. I just don't bother. I JUST DON'T BOTHER.
And so - I sometimes feel... lost in all the illnesses. Like - I'm not talking the right sickness languages. Because I don't FEEL LIKE going down that road or because if I let myself crack open that window all I will ever do is fucking whine about it. And I don't feel like it. It is NOT because I am "better" than others - it is because I have been DOIGN THIS LONGER. FAR FAR LONGER than most.
I'm used to this. I'm past the part where it gives you depression. I'm past the part where it brings you down. I'm into the LET'S GET ON WITH IT AND GET SOMETHING DONE ABOUT IT STAGE.
And yet-- there is this part of me that just wants to crumple up and be held. I never wanted any of it. I feel weak. I am NOT A WARRIOR. I want to be held and loved and scooped up and adored. I want someone to treasure me and tell me that it is not my fault. And trace their finger over my scars and say I'm so sorry this is here and this and this and this.
Right now I'm trying to write a funny article for my weekly column and I cannot find my humor. It just isn't there. And I'm trying to poop- but it isn't coming out. And I'm feeling so so lonely - and I want held - just held for a night - and told that I'm OK.
And that my life IS OK. And that things will work themselves out. I DON'T FEEL CHARMING OR FUNNY OR WITTY.
I feel alone and tired. I'm tired of negative people who are constantly finding fault and judgement with how other people cope. I try so hard to give space for other people's pain and their process. If you are sad- I try to give you space for that. If you are hurting I try to give you space for that. I try to encourage people in the best way I know how. And yet- I finally FINALLY have to draw some boundaries around me and say- NO MORE- MELISSA DESERVES TO HAVE SOME JOY IN HER LIFE TOO. Melissa needs joy.
I need some joy too.
We all are in pain - but we all also have room for joy. We are more than crisis. We are also all able to have love and happiness and joy.
I don't want this. But I MUST DO THIS. And so I am. I am doing the best I know how. It rakes me with tears sometimes - frustrated - that I am not on stage or in the classroom - that I am not being more productive in other ways. But right now - THIS IS WHAT I HAVE.
I'm doing the best I can. And I'm allowed to want to the safety of arms and love and snuggles and words that connect and hold me. I am allowed to want those things - no matter how silly or trifling they may seem. I am allowed to miss a life I no longer have. Because I do. I sit here and take myself to bed, and pet the cat, and love with the most open heart I can and I DO NOT RESENT IT. I LOVE EVERYONE THE BEST I KNOW HOW and I do not resent it not one bit.
But I miss love and being loved. I really do. It makes me lonely. All those times when it would be just a little easier to have someone touch me gently or cuddle me tightly - all those times when big arms holding me would ease the pain a bit - RIGHT NOW - that would work. And I don't have it - and in not having it - I miss it. I'm writing my loss to you. Because I can. It is my loss and it deserves my voice too.
Yet one more loss. Not just friends or jobs or money or cities or identities - but lovers and independence and the sheer knowledge that someone will come and enjoy the sensuality of scooping my body close. Yet one more loss. And still I must remain full of love and without bitterness somehow.
And that is the trick.