Wednesday, August 27, 2014
We tell ourselves we can multitask but less than 10 years ago it would have been considered rude and selfish to not put the phone down when you are with someone. I have offended people in the past by focusing on texts I was receiving instead of conversing with a person I was visiting. Now its common place but I personally have been awakened to think it is rude and selfish. I myself have been at fault and within the last year completely changed my habit. You know why I am hard to reach by phone? Because its not glued to my hand. Its usually in another room plugged in. We have a rule at my house that no phones at the table. We eat dinner at the table with each other instead of in front of a TV and my relationship is better for it.
I have personally experienced so many times a simple communication getting blown out of proportion because the individual reading it put their own spin on my words and then reacted negatively without asking for further clarification outside of Facebook. I too am guilty of this. I am taking steps to fix it because I recognize its a common problem.
Why is it so hard to pick up the phone or stop by to see someone we love? If our lives are so busy that we can't make face or voice time for all the people in our life then maybe we need to rethink our priorities. Facebook is about as feeling as a robot and its idea of friendship is false. As of today I have 1,245 friends. That's ridiculous and it would be next to impossible to have a personal deep meaningful relationship with every single one of them. That number is there simply to pad my ego and give me a false sense of importance and purpose but I guarantee its a ruse. There aren't 1245 persons thinking of me daily like Facebook would lead me to believe. Its arrogance and hubris for me to even think so. We are all equals. We are all people. We have built all these trappings to give a false sense of importance but its all centered around the idea that what makes us important is being better than the other guy. It isn't real. No one is better than the next guy. Not the rich, not the accomplished, not the educated. We are all people.
I think we need to focus on why we need things like Facebook to give us that sense of importance. We were fine without it before- how has it made our world better? I mean better- not easier. Friendship isn't easy. Nobody said it should be easy. Its a selfish desire to expect any relationship to lack effort. If you need it to be easy then that relationship has no value. What makes a friend valued is the hardships experienced by both to make it work and that in that we are showing someone the depth of our love. What would be more meaningful- a "Happy Birthday" facebook post or a surprise visit from a friend with cake, card, roses and a banner that said "Happy Birthday"? It's that easy to see the difference but we can't see the forest for the trees.
Facebook lacks the very essence that makes us human. Our touch, our voice, our love, and compassion. Our purpose on this planet is to impact others in a good way. What kind of impact are we leaving? Its a rhetorical question meant to be food for thought. I challenge the reader to a technology fast. Put the phone down for a few days and go do something with a good friend or lover. Note the richness of the experience when you aren't distracted by all that buzz.
Tuesday, June 24, 2014
So instead of being outraged that a family hoaxed a lawsuit I see this as a statement of how decayed our society has become. Consider this- regardless of the lie a girl was still attacked by a dog and had disfiguring scars. Her family tried to care for her and asked for outside support and received very little. Desperate, they lie about a situation and suddenly doctor's are offering free plastic surgery and the money comes pouring in. What this says to me is that people need to open their eyes and give more compassionately. Why do we live in a culture where people only give freely to those who have the appropriate publicity? We should be seeking the less fortunate and giving what we can.
I am not a little girl with disfiguring scars but in the last 4 years I have encountered hardships that most of you couldn't even imagine or have even bothered to ask me about. My cries for help and assistance frequently go unanswered - a general attitude of "It's not my problem", "I don't have time", "I don't have anything to give", "Its not a priority right now" are common responses. Additional responses come in the form of bias and judgments as to my decisions, medical care, and priorities. What happened is that I now intentionally isolate myself from my social circle because its been made apparent to me that my cries fall on deaf ears or that my community doesn't realize that a hug, a text message or a random surprise visit could be all I needed to make the day worth it. But we live in a country where we are stingy with our love and we deny people compassion on the premise that they don't deserve it or that we might get hurt or taken advantage of because we were generous with our hearts. But don't you see thats the whole point! We are here to give our from our hearts freely. Sure we get hurt but that's life. A hardened heart does not beat. A not beating heart is a dead heart. How can we call ourselves alive if our hearts are not beating and flowing with love, generosity, and compassion for not just who we trust but everyone?
Everyone deserves compassion. There is no way to know a persons story. We all have a story and at the end of our life we each will answer for our own mistakes and crimes. Our soul suffers. We don't need any help condemning ourselves. Reserve judgement for your own mistakes. Sure people may lie but that is on their conscience. Another persons wrong doing does not justify you jeopardizing your own soul. Wouldn't you rather sleep easy at night knowing you gave what you could to everyone you could regardless of whether they really needed it or not. Put yourself in their shoes. Consider how you would want to be treated were you in that situation- regardless of how you have been treated.
I am technically homeless and had been for the last 3 years. Were it not for the generosity of one man I would have been without a roof over my head or necessary medical care. I can't begin to express my gratitude to this man who asked very little in return of me. He showed me love while others turned away, made excuses or stated it wasn't their problem. When I see someone pan-handling or sleeping on the street I think to myself, "that could have been me" and I give them what I have even when I really had nothing to give because I know that if I was there, in the spot where they stood, regardless of how I got there I still would obviously need help. I see suffering all around me. Poverty, disability, homelessness- we are all just struggling to survive but this is what life is. Suffering. Breaking free from suffering is offering ease to another but so few do it.
Tuesday, May 6, 2014
I had an employability assessment today. It didn't go so well. The parking lot was being repaved do there was no handicapped parking. I got stopped by a construction worker for attempting to walk where it was level and the shortest distance and made to go around and through an overgrown flower bed. I am lucky I didn't fall. Then from the waiting room watched as he helped an elderly woman across the route I was trying to take. Little does he know that on x-rays I look as old as she did. But he saw my youthful face and made a snap judgement.
Then the doctors first words were to tell me that she thought that I need to stop seeking treatment for my condition because the more doctors I see the more things wrong with me they will find. She was very confrontational and I felt discriminated against again. She hadn't even read my chart or asked any questions. Beyond that how do you assess a person's functionality in a 1-hour clinic visit.
I wanted to say come see me on my bad days bitch when I can't leave my bed and I am not drinking any fluids or eating not just because I can't get out of bed to prepare it but because I can't get it of bed to use the bathroom. It's embarrassing to admit but some days I can't take myself to the restroom or dress myself.
My treatment isn't just me seeking answers to why my body is prematurely elderly its also treatment to MANAGE my existing symptoms. I do acupuncture, massage, chiropractic, and physical therapy. I follow up and have monthly organ checks to see that my medication isn't shutting my kidneys or liver down. They are still trying to verify lupus but my doctor is 98% certain that I have it. The tests have to continue though. I read people's stories and lupus can take years to verify. Is it bad that when it is confirmed that I want to show it to every doctor that treated me like an addict?
It's so discouraging to have doctors tell me to adjust to my new life as it is now, learn to accept my limitations and be happy with what I have only to be made to feel guilty by government officials, insurance adjusters, even friends and family for being unable to support myself and hold down a job. I am treated as less than human. How can I be happy with what I am now if I am constantly told I how I am a low life and treated without warmth and compassion?
I am not lazy or a liar, I don't abuse my medication and I am not a drug seeker. I do everything my doctors tell me and follow my treatment plan. However the reality is that all the treatments in the world aren't going to make me a happy healthy 30 year old again.
I am 30 years old trapped in a body that is internally 60 years old. When you look at me you see a young face but I am lucky to keep up with my own grandmother or any of yours for that matter. That's the reality I have been dealing with. Alot of people don't see everything I am doing to try to just survive but that's because they don't ask or try to be an active part of the process.
Before this all happened I had a good job that I chose because it was giving back. I was helping the people that help all of us in our times of crisis. I loved the people I served at the police and fire department and I loved the work I was doing. I felt good about what I was doing. I worked hard and gave it my best. My life felt like it meant something. Now I feel like I am nobody and nothing.
And you know what I have learned through this whole experience is that it doesn't matter how much you may have tried to give the instant you can't give anymore you are the bad guy. You are judged for not being able to keep up. It feels like there is no compassion for those who are struggling just to survive.
Our culture says people like me are a nuisance and a leech. That we are living unjustly off taxpayers dollars. We must be faking it and lazy. Meanwhile do you know who IS living unjustly? The wealthy. They can afford good doctors, whatever meds they need; they can make deals with politicians to saving them tax money. They have pricey accountants that help them avoid any reasonable fiscal responsibility to their country leaving the burden of the sick and poor on the sick and poor.
I understand that its not anyone's fault that my body is giving out on me. It's not even my fault. I understand that because it's not your fault then it seems unfair to have to help me or others like me out. But if you don't help who does? Am I just supposed to give up and die?
Why do we demonize people for admitting they need help? Why do we need to bring those that are already low lower just because they said they needed help? What do you do when you need help and nobody is there?
Thursday, March 27, 2014
What most people don't realize is that I am Peter Pan. I am stuck in Never-land. At the end of the season you guys have school, jobs, relationships, dreams, goals - manifest destiny. I have nothing until Pirate Season rolls around again. I have no way to disengage from The Game and I need that. That is not any of your fault. I need other friends that aren't pirates. I don't know how to fix that problem.
Being Captain kind of separates you from the crowd, The weight of everyone's problems, the responsibility of keeping the peace, the planning- I can't be one of the guys because I am the boss. I get that. But I have no Tinker Bell, no Wendy, no lost boys - no distractions. My comrades (other captains) lie, gossip, compete and cheat each other. My family was supposed to help me last weekend and didn't. A large quantity of people had more important things to do than help me even though I needed them. That is always going to be the case. I know that. No one should feel guilty because they had something they would rather do. I certainly would have rather done something else.
However prior to Jamaica I would have been stuck in a loop of hoping that the next time it would be different. Coming back I realize its a cultural thing. My mom was present and there for me and I was present and there for her when there were no distractions; when we had nothing to do, nowhere to be, and no technology. Somehow that felt like its how it should be. I had the most amazing time with her down there. I wanted to stay. Coming back here where people are always in a hurry and busy with something is quite a shock. Even my mom changed as soon as we hit the tarmac. What is it that drives us to be in such a hurry? She was in so much of a hurry to leave the airport and go home that she forgot her passport with me. I ask each of you to consider why we live our lives this way. It seems wasteful.
I don't want you to be afraid to come to me with your problems because it might stress me. I welcome the stress because I love you. I just want to know that I can come to you with mine. I rarely have someone who will just listen without needing to DO something to try and fix it.
I do however need people to take the time to understand how I feel. I feel I do need additional consideration. Nobody plans for their life to end up this way. I had other things I wanted to do before I was 30. There were things I put off that now I am never going to do. I thought that after beating cancer I had faced the worst demon but this is the beast that won't die. I went from making 120,000 a year to being unable to pay my medical bills. I was asking friends and family for loans even before I lost my job because I was missing so much work. I'd get caught up only to get sick again. Once upon a time I could leave my house without worrying about surveillance, I could go to a party or a bar of my own volition. I could do whatever I wanted. I knew freedom. Or at least I thought I did. Now some days I can't even leave my bed much less leave my home. How do you expect people to keep you involved when you are living day to day. But why are we planning our days so far in advance? why aren't we living day to day?
Now it seems that becoming involved in something new is so complicated. I feel discouraged because its hard for me to get to anything other than things other people are going to and only if they want to take me. I have no contact with people outside of my crew and the occasional other pirate. I have been trying to get out and do new things and meet new people but that hasn't been wholly successful. I apologize for the mood swings. I am in counseling and have been for a while but it just doesn't seem to change much. I talk, I get it off my chest and then the clock resets. So I am going to try writing. I haven't been able to sew for a while because of the impact my medication being messed up had on my life. I have piles of projects. I feel like I live from personal crisis to crisis. I don't know how to fix that. Changing my ideology seemed a logical choice but now that it has I just find that I am alienated further.
A lot has happened since my last post to this blog. I am now disabled. I am unable to work and my life is doctors appointments, legal disputes, pain management, and just trying to get by day to day. I am fortunate to be cared for financially by a friend and lover. I hate that I am dependent though. Recently returned from Jamaica I have to get something off my chest. I am going to keep this simple but this is what I realized while I was there.
I could easily fill up pages about how I feel right now. Many of you know that I have been depressed for some time now. This winter has been very hard and I am not through it yet. Few of you know the depths of the depression or even the source of it. Its not my intent to communicate with guilt or to be passive aggressive. I require nothing from you but at the same time realize that I need all of you. I realize that its not any of your fault that I feel this way. You have lives. You are going to get busy. Our lives are a self-serving rat race. If you can't keep up then you get trampled. Its not your fault that I fall between the cracks. Its the fault of our social culture. I hate this ideology that we exist in because it treats its most needy of individuals as if they are the lowliest lifeforms.
I feel invisible. I feel abandoned. I don't feel like I have a stable support structure. I feel like I have no future and that I am kidding myself that this pirate life could be my future because it depends on others wanting the exact same thing. I am discouraged because I feel like my friends are scattered and distracted.
I kid myself that I have friends. Some of my friendships seem to exist on Facebook alone. In truth I hate Facebook because it allows people to be lazy and not invest in people. There was a time that I spent every evening with a different person. Someone I cared about. That was worth driving to see but it never seemed to be reciprocated. Once I got sick, first cancer- I thought I had it beat but a mistake made by a surgeon left me with fibromyalgia. Arthritis from sports injuries and over-use. Potentially lupus.
This is my reality now. My future is dependent on others. My survival is dependent on others. My day to day care and livelihood is dependent on others. My health and well-being is dependent on others. Because I am dependent on others my quality of life is never going to be like it once was. Coming to terms with that is harder than any of you realize. My quality of life has to be adjusted. I have to settle. I don't get to make decisions about what I want or what I would like my life to be like because I have to depend on assistance or contributions of others. So I have to stick to base needs only because it is no one's responsibility to care for me.
I am grateful and humbled by those who contribute to my quality of life and enrich it. I am trying to be satisfied by just what I am given, but it is hard because I remember being able to do things myself. I remember not needing anyone's help. People expect me to be positive. To "hang in there" or "cheer up" but I feel like all that encouragement is just bullshit so they don't have to deal with how devastating a life change like this truly is. I try daily to see it as a fresh start but how could it be a fresh start if I am still clinging to a life that I used to love.
I am not excited about the pirate season for the first time in 6 years. Why? Because people don't know how to be kind and generous to each other without expectation. There is drama all the time despite attempts to be NO DRAMA because life here in the states is always "survival of the fittest". Its competitive because our individual self worth is dependent on us being "better' than the other guy. This is our social culture as Americans. I feel discouraged and lack the energy to try to change that.