Monday, November 24, 2014

What I Contribute

As I've gone to more meetings, developed my mission, vision, and goals and created projections for a sustainable business model I've realized more and more why women (especially women who have escaped and survived abuse and deal with chronic illness) throw in the towel.

Most of the successful, highly educated women I know feel like impostors. Everywhere I look people feel small, afraid of failure, and worried that they will fail. Knowing this, I did something in my business projections just for me. I put a value on my time at $300 per hour. It was what *I* am worth as a contribution. My time, my effort, my thoughts, my classes and writing I'm developing.

It's simply too easy to feel small and insignificant. It's too easy to forget that what I have to say is IMPORTANT. It's too easy to feel invisible, to give up, to hide. And I don't want to do that. I don't want to "fight" or feel like everything is a battle but I also don't want MYSELF to forget.

I also started thinking about what I like about myself. I LIKE the red streaks in my hair. I LIKE my funky femme style. I like the things about me that aren't corporate or necessarily a good fit in academia. I like that the road I travelled isn't everyone's path. I like that when I talk to people they say, "It's always such breath of fresh air." Or - "I feel like you're writing the words I don't know how to say."

For a small moment I started feeling like I needed a marketing team or lots of money or that I needed a better brand. Then I remembered that MY BRAND is the one I've spent my entire life creating. My self. I'm true to me and so that is my shining light. I'm not always happy and I'm not always sad. I'm real. And I mean what I say and say what I mean. I really do what to provide real services and I also want to make a good living. I have dreams and I don't feel like giving up.

I've said it before -- I didn't go get a PhD so I could sit around being sick and not working. But I'm being honest and loving to myself to admit that no one plans to be chronically ill either -- so creating a sustainable business that works on giving back and doing what I love is the best of all possible worlds.

Monday, November 17, 2014

(How) Can We Have Online Privacy?

I've been struggling with the concept of online privacy, concern for my safety, and disillusion with corporate and government handling of online content. (This is ironic as I'm using blogger - currently owned by Google who has been in partnerships with No Such Agency for a long time including PRISM surveillance. Google is not what it seems.

Background

As most of you know, I worked full time through college. During that time I had a variety of jobs- most of them information and research related. (A few of them were more menial- such as credit card customer service.

I first became aware of credit card companies collecting information from their customers in 1995. It was during a quarterly meeting when our area general manager told us about fancy new software designed to collect data made from purchases and analyze spending habits for both marketing purposes. Though he was excited and talked about how specific the company could be in soliciting customer purchases with adverts and creating new earning potential partners I grew increasingly wary.

He showed us how we could see one customer made bra purchases at specific stores in one city and coat and house good purchases in another. She bought airline tickets a certain number of times per month but had company reimbursements for all but three states. She never made food or grocery purchases on her card, so the marketing team wondered if extra incentives could be made to increase this area. Also- the gm discussed partnering with multiple companies and trading customer information and spending details for broader demographic information. As early as 1995 I already felt a lack of privacy for me and every customer who used this particular card company.

Now - with even our health and payment information being reported to credit bureaus and large companies as well as social media collecting, reporting, trading, and selling our information - and our government building a huge spy center using our information I cannot fathom what these demographic markets must look like. The Pew Research Center reported that over 90 percent of US Internet users feel they have "lost control" of how our information is collected and used. Online 1% of us trusted advertisers to do the right thing with our information and only 2% trusted the government. Very few people feel they have any recourse or ability to control or shield ourselves from such corporate or government control in our lives.

At the same time, we don't always act in our own self interest and behave in contradictory ways online. We even self report, check in, use rating services, make online comments (helpful for us as consumers) but also helpful for marketing collectors to decide what we are consuming and what area we live and our relative demographic information.

One stealth user - @qtperdu, points out that we have few digital privacy rights - especially with terms of use agreements which allow corporations increasing legal access. @qtperdu points out - "Being off the grid doesn't equal controlling your data. That's like arguing abstinence is the same as practicing safe sex."

So what to do about online privacy?

BASIC

One online security specialist said, "Use the notion of trades - dial up or down the effort to privatize depending on how much you value a particular service or what you see as a risk to a breach of that information. Would it be disastrous if the public discovered you ran a cute kitten photo blog? If not, then you can be a little less stringent with the privacy efforts. How about a mental health diary with personal stories intended to help others? Dial that up."

Tips:

1) DO NOT reuse personal information across sites (including passwords)

2) DO NOT reuse answers to security questions and avoid actually answering security questions with real personal information. (You can store your answers in a safe. Oh- PS GET A SAFE AND A CROSS CUT SHREDDER and use them to avoid identity theft).

3) Most services don't encrypt the answers to the secret questions so a database breach can leak all those answers. In this case this is a decent answer: "What street did you grow up on?" "Lizard" "What was your first car?" "Spock" "What high school did you attend?" "None of your business"

4) Sometimes friends can accidentally leak your information. If they can't cooperate, reevaluate how much you share with them

PF Anderson blogs about anonymous use online in a series of three blog posts. In the first, she discusses, Anonymous Social Media Overview, Part One: Context, Risks, Benefits & Opportunities, Best Practices In her post she writes:

"BEST PRACTICES FOR ENGAGING (MAYBE)
Don’t ask / Don’t tell (personal information).
Don’t identify yourself.
Don’t use your name.
Don’t use a known pseudonym.
Don’t use a friend’s name.
Don’t ask others to identify themselves.
Don’t describe your location, appearance, or other identifiable characteristics.
Don’t give your email address, street address, phone number, or other direct contact information.
Ask others you trust if they’ve had good or bad experiences there.
Post harmless stuff while testing.
TEST IT OUT!!"

OK- I'm on board with being anonymous and I want privacy! What other steps can I take to have privacy and anonymity online?

BEGINNERS- use practices that help with anonymity:

1) use hard drive and e-mail encryption, (remember that any free service is collecting data)
- Use PGP (pretty good privacy) for your e-mail
- Don't use commercial encryption software because they probably have back doors

2) use strong passwords - your privacy & security are only as good as your passwords

3) use anonymous e-mail or create your own anonymous e-mail

4) Use a good open source encrypted password keeper to store your passwords
like Password Safe or KeePass

Remember that a good hacker (even government or corporate sanctioned) could hack your best efforts easily. But it's worth it for the average user. (If you are a hacker yourself - you won't be reading my blog so you won't need my tips about privacy and anonymity ) because you either collect my information and exploit me, or do various acts to defy those who do, or a bit of both.

5) For chatting:
Use Cryptochat or TorChat

Or consider Wickr a new instant messenger with encrypted and self-destructing messages.

INTERMEDIATE:

Surf the web anonymously
using a
1) proxy server
2) VPN
3) TOR and Use HTTPS and HTTPS Everywhere when you surf online (I write more about using TOR and the Dark Web in the Advanced section).

4)Use Encrypted USB sticks using Tails - if you really want to have security - have a computer that has never been attached to the Internet and the one you use online. Upload your encrypted USB to upload data instead of the cloud.

5) When you want to delete files do it securely
and consider using Nautilus Wipe

ADVANCED

By the time you're here - you don't need any tips! If you are here - chances are you can hack me and leave tips on my blogger. (Please don't - I wouldn't be savvy enough to use them).

1) Procure the The Blackphone created by Silent Circle and Geeksphone offers encrypted calling plans, texts, and aps without the "poorly secured backdoor" other smart phones come with.

2) Use the Dark Web. I often refer to the advice I was given in this area -- If you need help getting onto the Dark Web (and you're not using good security protocols or are easily scammed) - you shouldn't be on it. Regardless - there are numerous tip pages giving assistance and advice. The tips and precautions begin with downloading TOR and then duct taping your camera and remembering that our government ceaselessly watches the Dark Web. Keep in mind that people have many words for Dark Web- including Deep Web and Dark Net.

Remember - only a "security wiz" is good enough not to make mistakes online - even on the Dark Web so probably best not to engage in lots of illegal activities or political revolutions (and know that you're dealing with dissidents, criminals, journalists, intellectuals, and the feds watching for traces of you when you're here.

3) Use onions for chatting. Also a good way to find hidden wiki and deep web navigation information. There is a handy wiki for how use onions

RECAP Big brother is watching. Your information is being sold. You have the right to control your data and privacy. It isn't just about some information it is about security, having the right to control your information, and having the ability to your own safety.

Why do I want to be anonymous or private if I'm not doing anything illegal? I have nothing to hide.

Here's a quick list of why non-criminals might want to be anonymous: or having people who track your data is problematic for the following: 1) counselors and therapists avoiding a stalking client 2) physicians avoiding patients seeking medical advice 3) Attorneys dealing with angry criminals with a vendetta 4) women (like me) dealing with abusive partners & leaving abusive relationships. Those people who are being stalked or have been stalked WHO DO NOT WISH TO BE FOUND BY THEIR EX’S OR EX’S FAMILY & FRIENDS 5) Reporters who are keeping their sources private 6) Medical, health, legal sexual practices being kept private etc.

Legal names are good for: stalkers, abusers, ADVERTISERS and corporations scoring you. This is big business. From health scores making insurance quotes to credit scores these companies use even small predictive details about you - such as if you are buying sports equipment, how much and if you watch tv or cable online, what social media you use.

Here is a good list of what they might include:

• Commercial data brokers
• MultiChannel direct response
• Survey data, especially online
• Catalog/phone order/Online order
• Warranty card registrations
• Internet sweepstakes
• Kiosks
• Social media interactions
• Loyalty card data (retailers)
• Public record information
• Web site interactions, including specialty or knowledge-based web sites
• Lifestyle information: Fitness, health, wellness centers, etc.
• Non-profit organizations’ member or donor lists
• Subscriptions (online or offline content)

It might make you feel overwhelmed - but it helps you understand why you might want to control your own information and selectively use resources and use technology that enhances technology encryption. It isn't always necessary to remain in super stealth mode- especially if you're advertising a business etc. But selectively using privacy software and technology doesn't have to be for hardcore criminals and hackers. You're allowed to be proactive in protecting your privacy - even if it's a principle and you don't even think you have anything to hide.

Sunday, November 16, 2014

The Work, Education & Student Loan Problem(s)

I've heard both very conservative and very left leaning friends talk about how college educations are a scam. One doctor believes in apprenticships and work. Another woman with a PhD openly blogs about how she believes in business start-ups and how she won't pay for her child to go to college but will help them travel and start up a business when they are grown up.

Historically (and true even today) the best way to move up in class was to get an education. This means if you are born in a very low social economic class - earning an education helped you change your class situation in addition to being a critical thinker, writer, communicator, and strategist.

Problematically, educations and certifications have become commodified. It creates yet another hurdle for people with low social standing to obtain better jobs. And, for people who wish to go into helping professions, service professions, and education, it creates an economic imbalance for the cost of education - especially if such jobs are not available. We often have more degrees being made than available jobs -- it creates too many trained people who are unemployed. I once read that there are more taxi drivers with PhD's in NYC than there are in the universities there. Laughable yes - but hardly a good use of the high level of training and expense if it is even half true.

Just today I read how many people are angry that the President is attempting to help people with high student loans seek lowered payments who have low paying jobs. After 20 years with low paying jobs some or all of the student loans can even be forgiven. The writer of one opinion piece said people simply shouldn't go into low paying jobs because the government is "encouraging students to have debt". This writer ignores how often tax payers bail out banks and self-serving corport interests. He is also ignoring that many important jobs are underpaid.

Doctors are often turning towards concierge medicine to recoup the cost of their high educations. By laying the cost on their patients, they turn away the underprivileged, working poor, and very sick who spend most of their incomes on medical care. I doubt, when they went into medicine, these physicians wanted only privileged patients. The justification they make is the cost of their student loans is too high and they are only making $90k and it is difficult to raise a family and pay back student loans etc. Rather than seek student loan help or education cost reform - we are allowing privatized exclusivity to muddy the medical care industry even further. These doctors might understand that their patients also have student loans and debt, but they are worried about caring for their needs. It is difficult to unite with your patients when your immediate financial future looms.

I will repeat this -- people do not get paid based on their worth or the value of what they do. People get paid based on who gains from setting salaries and what is culturally established as important. Historically, science and technology was considered heretical. The arts and poetry exonnerated God so artists and poets were paid handsome sums and held in high regard among the wealthy elite. Currently, we hold technology in high regard and people in that business are paid accordingly.

Gender is also a big determinant about how and who enters a profession and how much they are paid. Disability status is also a determination. Many people who can work part time and do quite well are not given consideration because there are no positions for them.

We often mock professions and belittle people who go into professions. Additionally, we don't pay them well and when they do go into that profesion and experience burn out or fatigue, we offer little support for them. I can name dozens of thee professions and carers and you can probably think of many yourself. We expect highly trained and educated people to constantly adapt, retrain, regear to "keep up" and we expect no loyalty from corporations or jobs. People who are highly compensated come to believe they are *deserving* of their incomes rather than simply lucky, even if they are hard working. They view hardworking individuals who make less than them as having less worth and less social standing. They (and we as a culture) begin to associate financial gain with DESERVING. No one is more or less deserving of high pay.

Do I have answers about education costs and universities and training and certification? I have a few suggestions. I also know that the increase in police violence, the enormous racism, homophobia, sexism, and ongoing inequality of people with needs is WHY we need education. People are quick to judge and condemn and not quick to have useful conversations, dialogue, and communicate effectively. We still belittle people who are different and react with fear and hatred using euphemisms and cloaked language to mock people rather than learn their stories.

I'm not apologist for education or academia. I found little solace there and believe it is another hierarchy of people ignoring the needs of disabled and differences and upholding privilege without recognizing it. But I also know that there can be good inside the bad and that I learned from it just as I believe it isn't perfect.

Do people need educations to work?

I also read a startling article yesterday reporting data from the Pew research saying a large percentage of unemployed people "don't want a job." Around 40% of women and young people had given up and 28% of unemployed men. Most people love to work and enjoy being creative, making a good income, and being resourceful. People give up on work when they have good skills but are asked to do undervalued work or their skills are ignored and the work is underpaid and unstimulating and it goes no-where.

People need training to work jobs that are meaningful. But they also need access to resources that will help them actually land the jobs that they will be good at. And more importantly, the good well paying jobs actually need to be there. Nothing is more exhausting than mountains of rejection letters and "fakey" job ads that you know don't exist. Nothing is more deflating than being told you aren't qualified when you hold degrees or 20 years of experience or being told you should be in technology when you are talented in another field that simply isn't hiring. If you want to start your own business - great. But it takes work to do that - and it takes acumen. And people tell you that grants and support exist - but you know what- they don't. No one throws money at you. And no one stands around and tells you how great you are or how successful you'll be.

People aren't giving up because the roads are lined with milk and honey. People are giving up because they want to work and they are running into brick walls. And people are telling them they should have gone into a different field, made better choices, question their work ethic, their abilities, and tell them to dress better and change their resume and not be afraid to work fast food while they are waiting for their Masters degree to pan out.

Friday, October 31, 2014

A boost

I wasn't feeling good the other day. I decided to delete the post because it isn't what I want to put out into the world. I haven't been feeling like I'm contributing what I want... I miss some of what I used to do and I miss a lot of my old life... I spend a lot of time working on starting a business... but at the moment my life is a mix of feeling ill, working on getting better. And instead of being a librarian or a professor -which I've trained for - I'm busy doing 2 things 1) making myself believe I can run my own business and then 2) making other people believe I can. I have never wanted to run my own business. When I was a librarian I was happy and I loved it. When I was a lecturer I loved it and as an academic and scholar - I felt at home. Trying to conceive of teaching as a "product" and marketing myself is complicated. I've never wanted to be a business person. I've never wanted to ask for money to teach or start up a business.

I've heard it said that starting up your own business is a full time job- and I believe it is -- but not just because it takes a lot of work -- but because you have to stay motivated and focused even when you feel exhausted and tired and you want someone else to be a cheer leader for you.

Clearly - if I was afraid of hard work - I wouldn't have gotten my degrees or written papers. If I was afraid of hard work, I would have given up long before now. But there is something else -- something I didn't expect - I have to keep believing in myself and then getting other people to believe in me... and it's odd. When you're sick or not feeling well it takes that much more energy. My life isn't the same.

I realize that all I need to do is the small things I know I can do and work on the bigger things that I truly want.

I also started doing things I've been wanting to do - like clean out my closet. It isn't really getting me towards a goal -- but I get to ask questions like: "Does this make me happy?" And asking myself over and over - lets me clean out the closet of my life - and also look at my own desires and meet them in small ways. I've forgotten someone that I'm capable of that. I've forgotten what I'm capable of. I think it's easy to forget what we are capable of sometimes. And I think it's easy to fall into despair.

Over the weekend I also went through a great deal of old papers that were at one point very important but are no longer. Some need recycled and some need shredded. Only a few need saved. I'm doing that. It's important to me to make these things happen so I can see some progress- even if it isn't the progress I want to see. Small things matter too.

Living in fear and feeling stagnant and hindered like I have no hope is the worst feeling. So I'm doing what I can to give myself a boost.

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.