Connection

Today I sat and discussed "family" and connectedness and what it means. I said to my therapist that I have never been so alone as when I was in my marriage. I have never been so completely lonely or untouched or perfectly harmed.

She in turn pointed out that we are never connected BECAUSE of people but because of our hearts. It was a quote she recalled- about only god being able to fulfill our connectedness.

I believe this. I have been missing my connection. I have also been NOT dating. And there is a part of me that feels afraid that I will be ALONE forever. And a part of me that feels unlovable. And a part of me that feels sad that I don't have children. And a part of me that feels too fat to BE lovable. And parts of me that feel completely opposite of all this.

I have spent my life healing and loving and learning how to forgive and love and be loving and lovable. I know that god has infinite mercy. And you can insert whatever name for god you want - but I KNOW that where I am right now is not where I want to be. But no PERSON can solve this for me. Perhaps people and connectedness and healing and loving can - but a PERSON cannot take away my FEELINGS of lack or fear. I must engage them myself. I must FEEL them.

And ultimately - life is a process that we go through alone. YES perhaps it is my job to learn vulnerability and trust. YES it is my job to start making wise choices about who I love and how I have boundaries - because sometimes people do cruel and unkind things and it is not MY fault.

I just spoke to a former English teacher. We became very close when I was in uni and then we became close when she was in treatment thru chemo. And then she got her PhD and I watched that. She was the first person to ever call me a scholar. And when I graduated from undergrad she was there encouraging me to get my grad degrees. And back in those days - I TRULY felt stupid and unworthy. I felt higher education was insurmountable. My parent's friends paid for their educations or at least helped them.

My friends were single. My friends didn't work full time. My friends traveled. I felt crushed by insecurities and judgements. They still creep up but not as often. Some where along the way I was healed a little more and a little more. To where now I only feel it a little. I feel fat some days and agoraphobic and am afraid to go out and meet people. I feel afraid to finish writing least I not say what I need to say. But slowly I am learning not to judge myself against other people and am less worried about what other people say ABOUT and TO me.

EXCEPT FRIENDS. When I embrace friends I expect them to be REAL. And I am noticing they are not always so. I am learning slowly to forgive. And I am learning to RELEASE. I am learning to have fewer "friends" than I thought I needed. And - sometimes I question myself. I say, "Would X come here to visit ME?" But the answer is YES. Throughout my life my friends have been IMMENSELY generous with me. I have been INUNDATED with love from all sides. I have been CONSTANTLY shown love during my most necessary times.

And so perhaps X might not visit - because *I* need to visit them. Perhaps I need to be the friend this time. It isn't always about me. And I am learning this.

Only god can give me a sense of fullness and connection. I know this. I meet people all the time who seem to have a COMPLETELY FULL LIFE and yet they are not happy. I meet people all the time who are living a joyous life yet seem serene. Because they have chosen to be connected. THIS is powerful.

I need to know this and feel it.

Scars on the Inside - Love Connections

I was talking to someone who has a scar on his cheek last night. He was sharing his childhood story with me and it was very painful. His scar is bc he had a birthmark and he had to wait until he was almost a teenager to have it removed. The scar is still fairly noticeable but doesn't distract from his appearance at all.

However, his story is one we can all understand - one of being bullied and picked on for being DIFFERENT. In the story he said, "For that reason, I don't think I ever want to have kids." It hurt my heart.

He is shy because of it and very sensitive. I listened to his story. And I reminded him in the "gift of the hit." How none of us escapes wounds and how all of us have scars- just some of them are in our hearts and not on our faces. And if he looks around he will see every single person in the coffee shop is living with the same woundedness. I'm not sure he believed me, but I know it to be true on some level. There are those who are wounded and those who wound. And some of us heal each other along the way.

He was feeling frustrated because of his shyness and his quiet personality. I thought of all the beautiful flowers in my garden and how they are all so precious. And how each of them are formed. No one is ever "perfect." And if a loud flower didn't have "quiet" greenery as a backdrop nothing would ever truly get noticed.

Every bright flower requires some distance from the other bright flowers. Every backdrop and greenery in the garden makes all the bright flowers pop. It is part of it. No one can feel betrayed by the others. They are all important. The tall ones are powerful and the short ones are equally necessary. Everyone of them are beautiful. The only one that EVER drew my breath in amazement was the lone rose that bloomed in December. It always made me love it the most BECAUSE it would bloom at the oddest times and it would bloom BEAUTIFULLY yet straggly like some people.

I cried when I described my garden. I love gardening and I haven't for several years now. I need to have my hands in the dirt. This spring I will make a small one in an above ground one, even for a few little things. I need to see things grow.

But I also cried for his pain... and I cried for my own pain. I know my heart is wounded. I feel unlovable and terrified of being loved least I am thrown away at the wrong time. I feel blamed for getting sick at the wrong time. And when I meet beautiful people I am both happy and frightened and I have no way to describe this duality except to say that people and hearts are contradictory and SO AM I. I am no guru and I am no saint. I am healing every day.

I described this to my therapist today and how much pain I am in about it - and a few things that are STILL happening because of the divorce- like not being able to just transfer my title to another state because we were co-signed... I shared some of my illness and divorce story with her.

She shared a powerful story with me. POWERFUL.

She told the story of a sociopath expert conference. In it hundreds of experts on sociopaths were gathered... each one of them were listening to the foremost expert talk about how a sociopath thinks compared to "normal" people.

A sociopath who had murdered and then hurt people was out of prison. He was walking past a funeral. He recognized the name and went inside. He thought the daughter of the dead man was hot so he stayed and talked to her. Realizing that it was not the right time to get her phone number, he left. He knew her brother and he knew there were other ways to contact her later. How do you think he got in touch with her? They were able to talk about it for about 15 minutes.

My guess was that he'd get in touch with the brother... right? And have him put him in touch with the sister. Right? Everyone else said something similar... Because they knew each other. Friends of each other... using networks and connections. Even waiting outside her work. Anything NORMAL. (The good thing is if you answered this way YOU ARE NOT A SOCIOPATH). No. He killed her brother. And went to his funeral and "comforted" her again and got to know her that way. And THAT is how a sociopath thinks. And you will never know. The only one who will EVER schonooker a sociopath is a better sociopath.

She said to me: "An abused person can get taken in by a sociopath. A normal non abused person can get taken in by a sociopath. And a sociopath can get taken in by a sociopath."

"Forgive yourself. You are not to blame for what happened to you. They only "betrayal" you did was to get sick Melissa. Otherwise you would still be part of the scheme and you'd have no idea what was happening."

And something in me lifted. Just a little. There is love in the world. Sometimes people are so good at it that everyone is fooled. Sometimes people are in "sales" for a reason. Sometimes people are wealthy for a reason. And they sell EVERYONE a line. And I realized that they even sell themselves a line. And THAT is why I don't talk about it. I want it to be over. But over and healed are two different things. Because this is MY illness story. She pointed out that part of healing is not living in the past - but not being ashamed that there was one.

I am deleting my online dating profile. I cannot date right now. I cannot. I have wounds in my heart so huge that I feel haunted by love. I feel terrified of kindness. Once - in jest a friend flirted and I freaked out. I was like "DO NOT make romantic overtures to me - even jokingly - because you have the life I want and you CAN date". I'm sure I perplexed him bc I JOKE around about sex and silliness so much. And when I date - I automatically realize that I only go out with people once or twice and then I'm done. If I feel even the slightest comfort zone or love connection - I'm instantly terrified... I cry. I'm so afraid. The past haunts me.

For now this is how it works. I'm sorry that this is my illness story- even though I feel like I'm almost done being truly ill and am on the mend... even though I'm at the point where I WANT to date. I don' t the answers except that perhaps sharing it will help it heal.

Lessons Learned

Today I had a physician openly talk about my case with other physicians in front of me. Why? I have no clue. Perhaps it was a teaching moment, perhaps it was on their mind. I know some of my doctors do not agree with each other. And basically- sometimes they are simply old school and don't know the new methods. And quite frankly - I DON'T CARE WHY.

In my heart I am a private person. I am vulnerable like anyone else. I started this blog as a healing journey and a method of discussing health and wellness. I didn't know where it would go. But life is complex when we are healing. It is even more complex when we are revealing anything personal about ourselves - like our hidden parts- our fears, our injuries, our illnesses, our fears.

And somehow listening to a discussing of one's own health and hearing another practitioners methods criticizes felt just wrong. It felt personal. There was more to it than what was understood on any side and I never spoke up because I was actually anonymous. Methods are methods. And the teaching moment taught us all a great deal. It worked.

Meanwhile - I also learned something about my own research. I am dealing with real lives. And I actually have CONSENT to discuss them. I have their permission. And yet it is always vulnerable to examine lives and talk about people. And yet it is what I do. It is what I have picked. So it helped me remember when I am discussing the people involved in my research to treat them with respect - even if they are engaging in behaviors that are outlandish or I disagree with them - to tell their stories in a way that is honest and real. And even if I do not understand or I disagree with others - to not JUDGE harshly because I DO NOT KNOW the whole story. To remember I look to only one lens. It was a lesson for me.

Sometimes lessons don't feel good. I hated it. It made me feel itchy and yucky even though nothing about ME was said, just "the case." Other doctors were criticized. But I like this other doctor. One who is helping me heal in powerful and important ways. And this other doctor is family to friends of mine. And it is a small small world. And life is like that.

Meanwhile - I have been getting back great medical news. And I am hoping to keep it up. I am doing gluten free and other important lifestyle... but I know it sounds very boring if it is not your cup of tea. Yet - I have the right to celebrate the good here too. Yes, I still have an infection and am on a constant round of antibiotics for it... but life is smoothing out. I can feel it.

Now for the finishing of this chapter. Now for the finishing of my writing. Now for the culmination of what I came to Ohio for - this healing path.

Conflicted

I've been conflicted lately about identity and health and illness. (And identity in general lately). I talked about it in an earlier post. I never did like the idea of labeling myself by any ONE thing... but lately I've felt REALLY conflicted about this whole illness thing.

It is heightened by conversations I've had with multiple people (interestingly who are NOT ill, nor do they identify as ill and one of whom doesn't even LIKE to discuss illness or deal with it but somehow will with me because we have become friends).

Anyway- one of them is all about mind-body connection so is always talking about how they are healthy because they WANT to be healthy. And I remind them that they are possibly healthy because they are LUCKY. But that doesn't help my guilt feelings... because part of me has ALWAYS FELT somehow punished.. - like I have done wrong or if I was a better person I would be sick. I think all of us feel that way.

This person also asked me once - WHY I have so many sick friends. And I remember replying - bc when the chips are down and you're really ill and in the hospital for periods of time - your healthy friends don't tolerate you but you're sick friends and caretakers and people who have been through illness and come out of it all do. I also don't want to be like a self-hating Jew or a self-hating sick person... one who fears my own self-hood. It is OK to embrace all of me. I just don't need it to identify me.

I dislike people who ONLY identify as sick... I HATE being torn down by constant whining and the constant conversation of sick talk. It is as though we cannot have LIVES. I am uplifted by hearing about families or school or work or pets or hobbies or the many other identities and joys or pains or LIFE that go on besides that. I also have pain for the medical profession where people are taught both shame and stoicism about their own health... which I think is deeply imbedded into all of us but seems to somehow come out more there... And I wonder how it is that our healers are trying to heal... and I realize that we must all begin to heal each other.

And this is why I thing if we are open we can find a certain sense of healing within ourselves and community and from within and without. I have been healed over and over from many places.. But having people question my illness and my mental desire to have any illness identity at all has brought me some conflict.

I realize that "thinking myself well" is nice.. and attitude is nice. But I feel like hell right now. I've made plans and I've worked. I've gotten writing done. I've done my healthy eating. I've been kind. And I've even seen some healthy shifting in my blood. However - ignoring HOW I FEEL because I WANT there to be an entirely mental connection and ignoring the physiological connection or heart connection is ... it isn't true to me either. Avoid sick people is just as self-hating as avoiding my own reality.

Also- it IS true that it isn't sick people I'm avoiding - it is the COMPLAINING and IDENTITY of WOE and the almost suffocating and cloying affect it has on me that bugs me. Emotional pain or growth and physical pain doesn't bother me. We all go thru it. I don't like being emotionally manipulated... and I also don't like the almost... competitive sport of illness.. just as I don't like the arrogance of other professionals... I threw in my ego towel long ago.

Have your one-up-manship... go - be smarter -faster, better, more sick, more intelligent... go WIN at everything... But that main problem I am having with SOME in the illness communities is that lack of support. If I tell some people I have a migraine or any symptom I get genuine empathy. If I tell another patient - I often get an almost competitive response. WOW - I'M SICKER-- LET ME TELL YOU HOW AND WHY.

And you know what. I don't do that to them. I am kind and gentle when others feel like crap. So I just don't say when I hurt or I feel sick. And THAT IS FUCKING BULLSHIT. What's the point of having so-called-genuine friends if they are so competitive. Why have people who stick around when the going gets tough?

Anyway - I've been feeling an impending sense of abandonment. I am switching to a new rheum up here - and that terrifies me because it brings up all the old horrific experiences chronically ill people have had. I'm worried about any thing from them saying, "If you'd take better care of yourself you wouldn't be ill" to, "You're not even sick - get out" and refusing me care. Of course, I can always go back to Atlanta and I can continue to phone in my Rx's till then... but just having a new doctor with NO history and no relationship scares me.

So that is what I'm experiencing. I have many good things going on in my life - but this is my medical stuff. And this is why I don't blog as much. But a few of you have reminded me that writing is also important. I often am inspired by you. And I feel like what I write is so stupid. I've been feeling low and dumb. I just have. I'm doing dietary changes and working to make a life for myself but everything in my life is NOT what I want it. And this is ok. Sometimes it takes a while to work out.

Thanks for listening.

Hope and Commitment to Healing

So I am starting a much more stringent eating program - which will cause some paleo and carb nay sayers to faint... but there is so much happening with my kidney and liver numbers right now I just can't risk putting that much more stress on my body and ignoring the evidence.

I am NOT happy with my sed rate- which has almost tripled... My numbers are in a cluster fuck and I have so many intersecting and complicating factors right now I'm trying to take it easy... Meanwhile - I'm starting a new diet plan where I am being even more vigilant about gluten than I have ever been, taking out known latex fruits, removing the nuts from my diet, and adding some meats like lamb and beef - which I never thought I would say- and see if that helps the anemia which I have yet to help through supplementation alone.

My whole life I have promised myself I would NEVER have an identity of just my profession or my husband or my illnesses... etc etc.. we must always be MORE than one thing. We are all capable of so much more. Helen Keller taught us that... but so did the people around her who learned from her... and her teacher who taught her and her family who spent time with her... all of us is MORE....

Research indicates that if you go to a support group for YOUR illness (if you only have one) the group conforms over time to the sickest person there. (But if you go to a support group outside your illness, it has NO IMPACT on you). I don't know if it is a pheromone thing or a chemistry thing or a group mind thing... it's like a dorm room where we all get our periods at the same time in synch. And in a way I've been spared that because I have so many illnesses I stand alone in many ways. I have more than one identity so I refuse to say I have x disease. So I have never gotten "sicker" from a support standpoint because I don't have that identity. This is why I avoid labels or calling myself a special name or don't say, "My disease."

Once a friend said, "Melissa, good luck with your lupus." And I freaked out. I said, "It's not MY lupus- you can have it." He laughed because he was trying to be kind and said, "You're dealing with it more than me. And I thanked him for his kindness. But I never say, "My" when discussing anything except a TREATMENT for an illness. IT ISN'T MY FUCKING ILLNESS. I wasn't created for this. I RESENT illness. I'm tired of it as much as any person would be.

Meanwhile support is important... sharing is important loving is important. Healing is important. It is why I enjoy the online forum but still don't own LABELS that much... It is also why I like to support MULTIPLE causes and illnesses because we're all in this together as advocates, healers, teachers, and patients. When we stop believing in wholeness and healing but in brokenness /victims and fixers we become estranged from our true ability and really disenfranchise ourselves from what we CAN become.

I'm having hope now that by creating an even better lifestyle I can heal even more. But yes- I am a little unhappy with some of my numbers. I'm not happy with some of my markers and I do have hope that I do better in the coming weeks. I HAVE HOPE that my commitment to healing works.