Friday, August 15, 2014

Self-Disclosure in the Digital Age: Response to Meredith Gould


This blog post is a response to Meredith Gould's post earlier today.


Stanford Medicine X (Part Deux): Pondering Illness and Self-Disclosure in the Digital Age


In her blog she asks the following questions:

How has self-disclosure changed for you in the past five years?
What factors have led to those changes?
Are you more or less likely to engage with someone who openly discloses personal health information? If you're likely to engage, is it in public or via the back channel?

Self-disclosure has changed for me in the last five years. I have felt more supported because of online communities and my ability to talk to healthcare professionals and other chronically ill people. In some ways blogging and being an "expert" in my own right has helped me kick in some invisible closet doors that were my secret shameful closet for many many years. More than being queer, more than being in an abusive relationship, more than any other thing - chronic health problems drove me to hide for a long time.

On the other hand- there are still areas of my life I chose to keep private from all but very close friends. There are still areas I have difficulties with and areas that trip me up. I'm more able to acknowledge they are sticky wickets - but it doesn't CHANGE their presence in my life. If I am applying for a job for example, because I think I am able to work but only want a part time position, I still need to decide if and how to explain a four year gap on my resume from when I was at my sickest. Yes, I may have been producing some work or getting paid in small areas, but I wasn't holding a full time position with a company that can vouch for my work. Do I say, "I have lupus and it's under control and I'm able to work part time and would love a position with your company." Do I say: "I had some health complications that are sorted and I'm looking forward to working for you now." How exactly does one dust away a four year absence from the work force without saying, "I took time out to have kids etc?"

And here's the kicker -- I KNOW for a fact that admitting to health issues DOES change how people treat me. IT DOES. Some of my friends treat me much better. And some of them dropped out of my life. Some of them handle my ups and downs and some of them ONLY want to handle me when I'm having "good days."

Factors that led to my changes:

1) I couldn't hide it anymore. My invisible health issues became visible. Glaring. And I got tired of my own shame. But coming back from it -- I don't know how. People have encouraged me to start my own business (again). They have "given me permission" - but have forgotten the ENORMOUS internal energy that it takes to have self-combustion and do a paying self-start up.

2) I wanted a companion and wanted to date without self-loathing. In order to do that being real and transparent was the only way I knew how to do it.

3) Sometimes I forget I'm sick. The only time it seems to make a difference are when I NEED people to know. (Like jobs or a lover or very good friendships). Navigating my life with health chronic health that sometimes knocks me on my ass and I sometimes forget about - is a strange and wiley beast.

4) I got tired of people & institutions TALKING about being pro-disabled but not really having any clue how much energy it takes to attend and contribute. Or in some instances - being actively discouraging to disabled people. I've been to too many professional conferences where dealing with being sick took ALL my time and energy and the ablism was so extreme it was laughable. Watching healthy people shout out, "If you need to read my speech because you are impaired step forward and get one." Watching how difficult it was to earn a PhD and seeing my colleagues publish -- knowing I was doing my utter best to get my IV's and teach, and knowing that paltry research and publishing I was doing wasn't going to cut it for a tenure track job. But also knowing that I worked in an industry that pretends that "equality" matters. I knew I wasn't on equal footing. Yes - my colleagues were busting their asses too. But being sick (like being a mother) is often a full time job in itself. Just admitting it instead of hiding it made me feel like I came out of the shame closet. My chest can finally breathe.

Occasionally- I get blown side-ways and when I do, I pull in and try to straighten my boat. I know from long experience that if I do NOTHING for a few days - life often sorts itself out to a calmness again. And the prospect of dealing with intense care giving situations while being chronically ill are sometimes daunting.

The most recent example are when my long-distance lover visited. I wasn't sure how she would take it when my mother got sick and I had to do some shopping and food prep. I was nervous answering some questions about my health and insurance. And I had two doctor appointments when she came. One was a simple check-up but one was for a steroid injection because I was feeling sick. Self-disclosure on a more personal level and letting a lover in more deeply was FAR more daunting and vulnerable to me than any online interaction. It was harder to do than any interview. I felt in those moments a sense that I could be rejected as being too difficult or having a family situation that was too complicated. Even now my eyes are tearing up because of how vulnerable I felt.

Am I more or less likely to engage with someone who openly discloses personal health information? Do I do it in public or privately? Both. I get emails and messages from many people who ask me about dealing with chronic health issues. I feel like an expert on it because I have been a patient for a VERY long time. I know how to do it and very little about being a patient or a caregiver throws me for a loop anymore.

I often engage with people who have chronic health issues. But I admit that I am more likely to make closer bonds with people who have more in their identity. I need more than a health issue to really connect or know someone. We are all more than our problems just as we are more than our accomplishments. I have rarely (if ever) met someone who doesn't have some complication - depression, health, sexual assault, or financial distress etc. What makes people light up for me are their spirits and the connection we make - online and off. I've kicked in the closet and invited others into my life. But that doesn't mean that celebrities going public are going to make it any easier for the rest of us. People are often afraid of illness or the complexities of chronic health. Some people are compassionate and nurturing and some people are not.


Tuesday, August 12, 2014

Un-Stuck


What are you doing today to get unstuck?

The news of Robin Williams death left me feeling bereft yesterday. I called my long distance lover and said my sweet words. I reached out to my friends. I listened to my friends pour out their sadness and grief. And I reflected on their pain at their own depression and difficulties with addiction. Some celebrated Williams' life. Some mourned how many people aren't finding help and treatment. Somehow the news made me feel both grief for him and his family. And a sense of remembering -- that this life is a terminal track. This is it.

THIS is all we get. I get these reminders constantly from my friends and family. They get sick, they die. I am reminded that living THIS LIFE as best I can and with kindness and integrity is all I've got. In some ways it has made me slightly more adventurous. In some ways I feel a little more inclined to stick around my home town and be near my friends and family than I once had because I want to be near the people who have supported me.

I reflect on the ways I've felt stuck and lied to myself or tricked myself into believing I cannot. And I remind myself that I CAN do some things that I have worried or feared I couldn't do. I CAN be and do more. I remind myself that getting in the habit of persistence and persevering is what I'm good at. (Getting out of bed each day. Making small changes each day. Setting a goal and chipping away etc).

Today - I'm getting unstuck by having gratitude for things I've long since forgotten I do have. And I'm actively sitting down and looking over my goals and working towards them. In some ways I have told myself I cannot have things or will not have things and I let myself believe them. Today - to get unstuck - I'm saying to myself, "if this weren't true - what if?" What if?

What does Melissa want to be happy? If I'm not making other people happy - what am I doing FOR ME?

Things I TRULY want for myself.

I enjoy creating a meaningful life and knowing that when I die I will have touched others in a way that matters. What am I doing to work towards that?

This is important to me.

Tuesday, July 15, 2014

"Sometimes You Have to Go Down to Go Up"


The other day a woman gave me to me several justifications in a row why she felt "blocked" from writing. Each time I responded, "Writers write, that's what we do." I felt like I was having a conversation with myself. Ultimately she said to me, "Thank you - you are so inspiring." She might have been inspired, but I was no less inspired. I've felt just as blocked, stagnant and lacking the desire to create as she. Meanwhile - I also believe many times sitting down and writing is an act of choice rather than inspiration.

I've also felt blocked in life for a few weeks. After talking with my TMI specialist she likened my description to the Hanged Man in a tarot deck and suggested I reflect on a Jungian analysis of what it might mean. I have done so and it is incredibly enlightening to consider both surrendering to my current life situation. It is powerful to consider what it means to allow the burdens of life to fall away and the alone time and stillness to offer what really matters. There is power inside -- and a complete and whole person developing.... and rather than freak out - sitting with the depth of who I am and allowing my intuition and KNOWING to come to fruition is a powerful way to trust.

Meanwhile - it is true that only a couple of months ago I said YES to the Universe. YES. I truly believe there is no coincidence that I expressed a willingness to let go of three beliefs and life patterns:

I let go of the idea that I'm a burden because I'm sick.

I let go of financial concerns and worries.

I let go of romantic fears or that I'm hard to love.

When we make big decisions like this the energy does kick up around us. I have felt the shift. It wasn't something I felt like talking about but it was a big change for me. Some of it was a relief and some of it was a tangible change. I actively sought out meaningful work. I expressed more joy and gratitude. But I also let some things slide. I'd start de-cluttering projects and let them sit creating a messy vibe all over my office. I'd do it again and again until every time I walk into my office I feel bogged down rather than uplifted. It is TIME to clean up my side of the street - energetically and literally. It is TIME to stop THINKING about what I want and just do it. Even putting my hands on items and donating and recycling will make me SEE the shift I've committed to.

And something else big happened. When I committed to not feeling like a burden - two significant people left my life. One was a romantic interest and one was someone I thought was a friend. It might not seem like a big deal - and some people might say, "Oh - they did you a favor." But I think maybe it stunned me a little. I was deeply surprised and a little saddened by how quickly people leave. The romantic interest left without saying goodbye or telling me why. She just stopped calling. I expected it, but it was after she saw me be sick I knew it changed how she thought of me. She never got to see me be funny, or loving, or any of my wonderful sides either... But being "abandoned" for being sick -- that was my wounded area. And that is the wound she touched when she just stopped calling and stopped coming around. It left a mark. I cherish that wounded area now by writing about it and shining a light into the darkness and recognizing that NOTHING is so wrong with me that I deserve to be abandoned for being sick. In fact, I'm very right for the right lover. We all are.

Another person left in a bigger and far more dramatic way. They were friends with me for several years before finding out I was sick. They had their own negative relationship with chronic illness because their father died when they were young and their brother had a a liver transplant. Because of this they often felt invisible and had negative associations with anyone who dealt with illness. When they found out I was sick they said, "I can't be your friend because you might die." I remember standing there and feeling my heart break - truly break. It was the very worst case scenario. Until then no one had ever voiced it out loud. I also remember saying, "I'm not dying any faster that you. You're going to die too you asshole." I also told them to go to their own therapist and deal with their shit because it wasn't my shit it was theirs.

And that was that. I cried and cried about it. But I carried on. I learned to live without their friendship. And I also dealt with my own anger towards them.

Later they apologized to me and I accepted the apology. They came back into my life and we began hanging out again. I never felt we were going to be close friends again, but I did think they wanted to establish a connection. For six years they met up with me for lunches or dinners, helped me pack my U-Haul when I moved, clean out my storage unit when it flooded, and told me about their sex life. For six years, we were never close, but I felt we had re-kindled a type of friendship.

At the spiritual retreat I saw them. Rather than being pleasant and cordial the way they usually were with me, they were angry. They behaved in a surly and sour manner. They said things to me that surprised me with their curtness. Finally- they sent me two e-mails explaining what a burden I was and how for years they had so much guilt about me. They had lived with an enormous sense of "putting up with me" while I had operated under the belief that we were simply OK. They showed up out of a false sense of duty and felt I was an albatross and I thought they had worked through the idea that sick people were frightening.

I really was this persons personal burden and I didn't even know it!! For years they suffered my company and my intrusions on their spiritual retreat was more than they could bear. I had no idea! If they had asked me not to go to the retreat, I would have found a different retreat. If they had let me know they didn't want to rekindle a connection, I would have stopped inviting her out when I visited.

It left me with a feeling of - "How could I be so blind?" and "People enjoy my company and I genuinely like theirs -- if they suffered so much around me why be a martyr?" Part of me felt incredulous. Part of me felt sad. And part of me felt victorious - like my proclamation that I'm not a burden actually worked.

And -- it also left me feeling a little raw. Like I can't trust that other people genuinely want to be around me. If I don't notice when people are faking their joy and friendship - how can I notice when I am a burden. But life is built on joy and gratitude and being seen and loving people for who they are.

All of this has been happening for me. Mostly internally. A little stagnant -- a little waiting -- a bit of loss, letting go of patterns, finding new joy, allowing, and TRUSTING. It is everything from this position. As I write I am positive that writing this is my way of both releasing and allowing.

Its my way of surrendering to the situations in my life. If you are ever waiting on an elevator and they are all going down and you want to go up, sometimes you just press the down button and wait a long wait -- knowing you can select the up button when you reach the ground. It's circuitous but it gets you to your destination eventually. Sometimes you have to go down to go up. I've felt blocked and upside down for a while -- but this is my path to a greater understanding and rejuvenation.

Wednesday, July 2, 2014

Resilience


Everyone once in a while someone will either ask me my biggest fear or tell me their story. Listening to people's stories is nice. It's familiar. I get it. Picking through my fears to tell someone my "biggest" fear is like picking my favorite song. Which one is my biggest one TODAY - in this moment is more the question.

Am I more afraid of being seen? Of being emotionally vulnerable? That I'll never be truly healthy? Of too little change? Too much change? Of abandonment?

I scoop up my fears and pile them like twigs around a fire and say, "Thank you for sharing." Some days I reflect on what it is that "holds me back." Other days I think -- "I'm not asking myself what's wrong with ME - I'm simply asking, What's wrong?"

I've been able to laugh. I'm in a better mood. Still - the shift I want to feel isn't coming. Or if it's coming I've been hiding from it. Hiding because change means -- change. Being willing to change, flow, adapt. Can I? Am I resilient enough?

Maybe that's my newest fear. Maybe truly that's my largest fear. In the past I've been happy to go on adventures and throw myself into LIFE. Now - I'm far more risk intolerant -- some might call me risk aware. My question is -- Am I resilient enough for THIS?

I don't like to consider myself a fragile woman -- but I don't like to put myself in harms way. Maybe it's just being grown up. I can handle the emotional challenges - even if I don't LIKE to feel sad or emotionally bereft. But physically- I have a new respect for my body's requirements.

Maybe that's the point. Maybe everyday is waking up, feeling gratitude for what I have. And recognizing that I have exactly enough resilience for what awaits me. And trusting myself to make the choices for me that work and have just enough adventure for spice and joy.




Friday, May 16, 2014

Living Uncomfortably - What I Want is on the Other Side of Fear



I've been telling myself for a year that what I want is on the other side of fear. Yet I had no formal process for making something positive happen. Saying things is good. I often say things out loud in order to gain perspective. But what I really need is a way to get where I want to go.

Then I found it. A woman in a workshop discussed her "Year of Living Uncomfortably." YES! This is what I've been seeking.

The idea for living uncomfortably is looking inside consciously and discovering what we automatically say "no" to and considering if we might push ourselves a little -- into a less comfortable place. I have been doing this.

For many women this is a body risk -- they wear or do things that put their bodies on more display, forcing more body love. They wear more body hugging clothing or they go to the pool and wear a bathing suit. For me - a woman who regularly stands on stage presenting burlesque dancers in her bra -- I am taking more emotional risks. I am dating more, and to do this I am taking myself to places that I might find suitable dates. While I don't feel unhappy as a single woman -- I also want to ALLOW for romantic possibilities. So I thought to myself - what kind of person do I want? What do I ENJOY? What do I do that makes me happy? I'm not a party girl - going out to bars won't make me happy -- but doing things that I already LOVE, (volunteering, civic duty, roller derby events, boardgames, general kinkery and geekery) puts me out there. I have fun AND I make more friends who are into what I'm into -- AND I might meet someone with my interests.

But it's still oddly challenging to be "the new girl" at things. I like being "good" at things. Or at least knowledgeable at things. I like a bit of routine. Going to volunteer at a brand new place feels awkward. Not being really super good feels awkward. Going out to new places where people don't smile at me or know my name has felt awkward -- and YES -- it has felt uncomfortable.

Next - I'm working on going to tai chi and (selectively) using new technology that will enhance my life. It makes me uncomfortable. But I believe it will enhance my life.

These seem like such small changes. But ideally I am working up to some pretty big goals.

My goals are three things I "let go of" at a spiritual retreat.

First - I let go of the idea that I'm a burden because I'm sick.

Secondly - I let go of financial concerns and worries.

Thirdly - I let go of romantic fears or that I'm hard to love.

In this place - I took in the affirmation of YES! And I picked up a beautiful white rock to symbolize fresh new energy.

I've been cleaning out my office and removing clutter from my desk. I've been putting yarn in bins and donating clothing. I've been recycling and shredding papers. And - making tidy piles of papers that need filed. It is time for me to actually LIVE my current life.

For a while now I've been sitting in my current place and feeling a sense of "impending change" -- as though if I didn't truly move in, I wasn't really here. I kept looking to the future. "I will soon have a new place and can organize this later." Or: "This isn't REALLY where I want to be, so I don't want to be comfortable here." Really - I felt a sense of shame and well... discomfort. So I thought to myself -- what happens if I TRULY move in here? What happens if I put on fresh new bedsheets and comfortable pillows? What happens if I organize my office and put up a pretty lamp? What happens if I make this place the way I would if it were the last place I will ever live and I'm truly home? What happens if I bless this place and feel a sense of love and gratitude for it?

And I realized - THIS is what living uncomfortably FOR ME is right now. It is living in my moment. It is being present. It is having gratitude and letting go and bringing in the new. It's a powerful new way of living for me.

So far -- several things have shifted. I've started getting a few contacts from potential part time lecturer positions and other financial ways to lighten my life. As I've given away older things that are no longer useful, newer things have come into my life. I was given a new printer for my birthday. I was given a new set of sheets. And -- two people have willingly gone out of my life. Clearly purging has allowed valuable space in my life.

And - I don't feel like a burden. I don't feel "bad" or responsible. What I want is on the other side of fear. And I'm living uncomfortably to meet my goals and allow new and better thoughts and people (for me) into my life.

Thursday, April 3, 2014

Poetry Month 4.3.14

(Inner and Outer) Space


Our mother earth.
Pale blue dot.
Father -- bless them --
Time.
Sundering.
Rending and Mending.
Journey - of a thousand--
Pictures worth more -
A pen mightier--
Blood is thicker than.
Firmly rooted --
Here.
Our only
Home.

Wednesday, April 2, 2014

Poetry Month 4.2.14

Life and Death Matters


He records life without his life partner using photographs and stories.
81 weeks since you've been gone.
They record life with their new born.
Day 21.
Today is, "give me that remote and shit happens."


A 55 year old new father blogs to his new son recording the blessings of new life.
A woman with metastatic cancer records her ten year journey living a not chronic, not terminal illness she will die from someday.
He begins his entries, "Today you discovered..."
She beings hers, "People keep dying."


She writes:

"When I was first diagnosed, I sometimes wondered 'why me? Why did I get
sick?” Over a decade later, I sometimes wonder, 'why me? Why am I still
alive?'"


Life. Love. Birth. Death. Loss. Connection. Sharing. In the
end each person makes a connection.
Each person matters. They matter to me.
People keep dying.
And they keep being born.
Life changes. It changes us.
It matters.
We matter.
You matter.