Leaving existence for the experience (UPDATED)

*Originally Posted April 2006, 1.5 years ago... update follows...

I think its been too long since I've posted here...I know there are a select few of my friends who are reading this, and have probably already heard this story, but, I said I was going to post it, so, I will...

I gave notice at my job, and my last day will be May 5th. This began as an internship position working as a counselor/case manager with clients who have developmental disabilities. I had intended for the position to end in May, as the internship is supposed to, along with my classes.

Well, that is not how things worked out. I guess I was fortunate to be offered a position with the agency, when months ago one of my supervisors gave me the offer. A bit before, I had seen this coming, and did some searching within myself about what this would mean.

I came to the agency energized, excited, and expected to be incredibly happy doing the work I had felt was literally my "purpose"--for those who know me, I believe we are here for a reason, and are always searching for what that may be. I think the reasons can be numerous, but I believe my advocacy work is one of them.

I had been with the agency for awhile when I just remember feeling not as excited to go to work, distracted at work, angry with the way the system was set up, and the role I was playing in the flawed system I felt my agency had.

My job is to counsel clients who are mentally retarded (we prefer the term developmentally disabled, but for those who may not know...) and have some sort of mental illness on top of their disability. These are clients that I have grown to adore, have become a part of my life in some small way, have changed how I think, and who depend on me. Yet, I here I would be in a session with them feeling like they were being cheated and screwed by the system.

Many of the clients have behavioral problems due to their disability. They're stuck in a world where they aren't valued, where people make remarks and jokes about them, where they are treated like children, and not respected. More often than not their family is not around, they have been abused, and are in need of validation, love, respect and somebody who cares.

The agency does a lot of good for our clients, but after working with them on-on-one, I began to see a pattern. Most of them are on Medi-Cal and low income, so they cannot afford the best medical care. Their group home (where most of them live) can't put up with the behavior issues--which really are just the client's cry for attention, love and a result of not being able to communicate their emotions/needs to the rest of us. What then happens? They get "labeled" with some mental illness, and placed on numerous drugs, and referred to counseling with me. The difference between the clients on medication and not on meds is amazing. Yes, some of them really do need medication to function, but often times I see it used as the easy fix. The behavior modification programs--proven to work--cost too much. So there I am, in a counseling session with a client who is so sedated on medication that they are falling asleep and cannot benefit at all from therapy. We get to bill for it though, so it all comes down to the money, whether they need it or not. My clients--and this is very few-who are not medicated are lively, alert, have wonderful personalities that they show us all. They are the ones I see progress with and who are living their lives.

I wondered if this was something I could continue to take part in. The physicians who prescribe the meds often do not take any advice, and are honestly offended by a social worker telling then the client is over-medicated, so, there we are stuck to work with a client who cannot reach their full potential. What this is really all about is society not wanting to deal with something/somebody abnormal. The medication keeps many of them hidden, quiet, and unnoticed. It is not something I blame the agency for, it is a much larger societal issue of us only being accepting of the norm, the average, and often the boring...In the process we miss lessons to be learned, and moments to make us think...

I questioned whether I was simply not wanting to take this position for the money (the pay scale is very low compared to other jobs), but, that was only part of it. I can be confident in saying I could not compromise my beliefs and continue to work with these clients that I feel deserved so much more.

What is my ideal job? I used to think this would be it. I got caught up in the fantasy on not dealing with beurocracy though. This is the unfortunate aspect I have come to realize, is that it most likely will come down to me compromising my beliefs in someway to make a living. Does it have to? I do not know the answer to that... but it greatly saddens me to think that this is what so many of us must do every day. For those that don't, you are very lucky, you have been given a wonderful thing in life.

UPDATE: OCTOBER 2007

I sit here, now nearly a year and a half later after that original blog post. At the time, I did not know the ramifications of my difficult decision I had made. I had saved enough money to pay my rent/expense for a few months in San Jose while looking for another job. I was completely sure this would happen. Great experience. Advanced degree. Great resume. Not shy of the interview process. This however did not happen, and so I moved to the last place I thought I'd be living again--Santa Cruz, and to my parents house. All I told myself was "this is temporary". It turned into long-term temporary. I volunteered a lot to make sure my resume had no gaps while interviewing, but continually was turned down for jobs I was more than qualified for, while my fellow students had for the most part found jobs right away after school. I became a bit disenchanted at the work I'd put into getting where I wanted to be. After a recent friend (who has a similar disability) had the same problems getting into the career world, after graduating with a masters from UC Berkeley, I was left with the sad thought that of all the fields I had chosen to go into, social work really was not as open as it claimed to be to somebody like myself who has a disability. I vowed that I wasn't going to settle for a job I'd be miserable at or that wasn't worthy of having me. I finally stopped applying for every job I fit the qualifications for, and became more selective, but this meant less interviews.

Here I am, now the middle of October. My patience and determination have since paid off. I have been working as a case manager now (ie "social worker") in what I never realized would become pretty close to "ideal" job, as a social worker anyways--at least for a first job out of graduate school. I was offered this job after volunteering at a place that mainstreams developmentally disabled clients into the community--into their own apartments (with assistance), and helps them to be as independent as possible. We empower them. After only a short time as a case manager, the director of our agency handed me a job description of a supervisor position for a new program we will be opening up (basically, an awesome position), I said it looked great but may add something in about what sort of detailed educational background she was looking for. She looked at me and said "well I don't want anybody else who I've considered and who wants the job, the job is yours if you want it. " Stunned I kinda sat there, completely and unexpectedly grateful for this opportunity that I did not see coming.

Now, in the first part of 2008, I will be starting my new position, and finally will have settled into what has become a town where I thought I would never stay in for long again. I have established too much to leave here right now, I'm single so have no person to move for, and I will finally be able to comfortably afford to live how I want to live-in my own place again. Santa Cruz won't be my forever home is my guess (considering I'd like to buy a home) but for now its become a place that has its arms around me and doesn't seem to want me to go.

Be Jealous

Be Jealous

I can't take credit for creating this...got it from another blog, but thought I'd share (thanks Nikki!)

And for those who may take offense, this is all in good fun, and obviously does not apply necessarily to me, to everybody, or all disabilities since they all differ...

Enjoy...and be jealous you don't have one ;-)

The 100 Best Reasons for Having a Disability...



1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places.
4. Always the last person to be suspected of anything. (so true...)
5. Never have to wait in line at theme parks or concerts.
6. Priority housing.
7. Everyone thinks you're sweet and innocent (even if you're not).
8. No strangers will ever confront you because they're afraid of hurting your feelings.
9. When you run over people and tell them it's an accident, they actually believe you.
10. You can get people to do things like cook for you because you're in the chair.
11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going downhill.)
13. People always look at you like you're an inspiration.
14. Double rides on all roller coasters.
15. Some teachers offer to help you out with notes, and you can show up late for class.
16. Every time you stand up, you can freak strangers out (or get an ovation from a crowd.)
17. Enormous bathrooms.
18. Shoes are an option
19. It's a great excuse for anything! (It's not my fault, It's my disability!)
20. You never have to worry about finding a place to sit
21. You end up with mad wheelie skills to impress people with
22. When your drunk, people never suspect, they just think that you have CP!
23. Time extensions on exams
24. You never have to do anything to get attention-- people are already staring
25. Never having to walk to class
26. Being able to "walk" with a use of a joystick
27. ELECTRIC WHEELCHAIRS CROWDS = FEAR
28. Developing a high pain tolerance is never a bad thing
29. Never having to demonstrate a problem on the board during math class
30. If you're slow people chalk it up to your disability instead of pure laziness
31. Burning off every calorie you eat at lunch in one trip to a non-handicapped accessible building
32. You could go out with a gaping hole in the seat of your pants and no one would notice
33. No matter what kind of crap you pull no one will ever kick you out of Bar or Club (hahahahaha)
34. Your wheelchair can double as a shopping cart when you and your friends go shopping
35. Handicapped Parking
36. An excuse to use the bumpers when bowling
37. Boyfriends or Friends the like giving you lots of hugs, kisses and sympathy when you fall, which is often
38. If people drop you or make you fall accidentally, they feel so bad that you could get them to do anything-- the question is will you?
39. No one makes fun of you for tripping and if they say, "walk much?" you get to say no.
40. People go out of their way to open doors for you
41. Going to college is a HUGE deal, if you go everyone around you is amazed
42. Parents brag about how "strong" you are
43. You get to kill stereotypes on a daily basis
44. You always have a lap to hold stuff on
45. People part like the red sea when they see you coming
46. Being bad at sports is a given so as long as you attempt to do it people are impressed
47. You have more life experiences than most people you know
48. Handicapped seating is usually in the front
49. Never having to take classes like gym and shop
50. You can get out in the middle of class at times
51. You can kick or hit people and claim it was a muscle spasm
52. People give you free drinks at coffee houses because the people at the counter think you're "sweet" )
53. If you break something by running into it or over it no one makes you pay for it.
54. You can meet the most awesome people when you have to ask strangers for help
55. Fuck with the heads of all the people that want to "save the poor crippled girl"
56. You can have your friends do your hair and makeup for you
57. The media loves you!
58. Everyone knows who you are (actually, a lot of people don't too.)
59. You're never too old for piggyback rides
60. You make a good walker for your injured friends or drunk ones.
61. You can get all excited about stupid stuff and people just think you're "cute"
62. You never have to act your age if you don't want to because strangers think you should be immature (i think i might be a bit insulted by that...)
63. You get to amaze people by actually being able to swim in the pool
64. If you don't have your chair with you many, many people will scamper and offer you their chair.
65. You can single-handedly be the amusement of all your friends
66. You get some great material for stand up comedy
67. You learn to appreciate the small victories
68. You are easily recognizable in a crowd
69. You are not easily forgotten (especially if run people over)
70. You can hide things next to you in your chair and or shop lift are they realy going to search your chair.
71. You can swallow pills without water
72. You are popular (even if it is just 'cuz you're the "cute handicapped girl"
73. People like to party with you! (There's nothing funnier than a drunk crip)
74. You can use the word "crip" and not be referring to a gang member
75. You never have to worry about getting your feet wet
76. You can use those carts with the seats attached at the store and make everyone wonder what the hell you're doing
77. No one ever questions your excuses
78. Pain killers (paid for by someone else)
79. Biker gloves aren't just for fashion anymore
80. No one questions anything you wear, do, or say
81. Slamming into doors to open them is kinda fun
82. You get praised for doing the simplest things
83. You don't have to worried about people giving you wedges
84. No worries if your pants are too big
85. Falling everyday gives you the skills to fall without injuring yourself
86. No one messes with you (for fear of being run over by a chair or impaled with a crutch)
87. You can incorporate your wheelchair into your Halloween costume and go as a transformer
88. If you drop something someone else will pick it up for you
89. You can in more circles in a smaller amount of time than anyone else
90. You can invent fun Wheelchair friendly games (make none disabled person go down a ramp and watch them fall. It hilarious)
91. Braces make it so you don't have to shave as often
92. You can get as many tattoo's as you want on your legs without pain
93. You don't have to worry if shoes a comfortable you don't feel it any way.
94. You can get into most bars an clubs without paying a cover.
95. Never getting ID at bars and clubs.
96. If your drunk you get just take a little nap in your chair
97. Great way to pick a cute guy up in a bar is run them over that they land in your lap. It works every time.
98. If you don't want to talk to someone you can make them think that your retarded and they will believe you.
99. You have great stories to tell at parties or gatherings
100. It just plain rocks and you know you're jealous!

When life forces you to stop and slow down

Its almost been a week since I started my Internet fast (which also means it will be over tomorrow at 5pm). I remember thinking what horrible timing I had picked to do this--when my schedule was just about to become crazy busy and I thought I would need Internet the most. In actuality, timing was perfect. I needed the break as life did get crazy, and needed every bit of spare time to devote to other things going on.

Well with craziness I should have known something would make me slow down. I'm supposed to be at an all day retreat at church right now, but, I'm home instead. I'm home because I apparently did not willingly take a break and it caught up to me as it always does when I keep going and don't put on the breaks, and so, here I am, sick with a miserable cold! This is turning into a fast from speaking for now as well as it hurts to much to talk, and its also gonna be a diet, since my throat is so swollen swallowing my food is no longer automatic!

A week of work overload, my brother moving in, my close friend moving away and the new busier schedule at church getting started for Fall apparently wiped me out. Temporarily.

I felt it coming on last night right before I had a phone meeting with a client of mine. I thought "ohhhh nooo, not now of all times!". I immediately went and loaded up on my huge stock of vitamins and herbs that I pound when I feel something coming. Most of the time this really does work. Not this time.

So here I am sick, missing an all day retreat that I've been looking forward too, with a full schedule ahead of me for tomorrow and Monday as well.

Maybe this is a sign to just rest!

With that said, I'll keep this one short, and hope a needed break wipes this nasty cold out!

Lesson? Choose to slow down and take a break, or life will do it for you!

:)

Little brother, where are you?

Sunday, at 5pm, I started a week long fast from the Internet. This fast just came about after realizing I wanted some time and solitude, to clear my head and my thoughts, and not allow myself to be distracted. The Internet is one of my biggest "distractions" when life gets too busy, or when it isn't the fairy tale I thought life was going to be as a young child.

Its not just about giving up the Internet for a week and going to my other forms of distraction. Its about learning something from this process.

Well, are you wondering what I'm doing online then during this break? I decided I'd allow myself the use of the Internet for two things: Work (I can't quit my job for a week right now), and to blog. So far so good, I have not cheated, and already I notice my thought patterns changing and me having to process more, think more, and be in the moment more. I'm choosing not to escape.

This fast came about at an ironic time. I don't believe in life being random, so I think the timing was perfect, although when I first realized what would be going on during this fast I initially thought I had not planned this well, when in fact, it was planned perfectly.

On Saturday, the day before my fast was to start, one of my long time closest friends moved away. My younger brother also moved in.

I met Melissa 5 years ago. She was the new young woman dating my younger brother, Matt. Slowly over the 5 years she became a part of our family. Although their relationship was often difficult, I could not picture my brother without Melissa, and expected that they would soon get engaged and marry.

We all hoped for this, and Melissa wanted this so badly with my brother, but after a very rocky final year, my brother decided, for reasons he can't explain, that he could not get married. To sum it up, he said his emotions were just a mess and he was confused. After months of trying to work on things and getting no where, both decided to mutually split, and Melissa moved back to her friends and family three hours away.

This isn't about another breakup though. This isn't even about losing a friend, as Melissa and I have a friendship that is independent and strong, and we both have faith will last.

This is about losing my brother. Truth be told, I have never found my brother. I see him several days out of the week, yet he remains a stranger to me. I'm closer to his now ex-girlfriend than I am with him.

Where is he? He is lost, broken, alone, in turmoil, and has been for years.

My brother has always been a bit of the outcast in the family. For whatever reason, he is emotionally removed. He is there in body, but at times that seems that is all that is there.

My brother told my family a few years ago, with a blank stare on his face, that he didn't know if he loved us. My Mother wailed at the thought of her own son not loving her, my Father pulled away and shut down. I on the other hand knew this all along. It saddened me to hear the words, but I knew my brother did not know us, and therefor could not love us. My parents are also difficult people to love. I am often asked if I'm adopted, because I'm nothing like them. I tried for many years to fix my broken relationship with them, but finally resolved myself to the fact I can not fix a relationship when the other person does not see or want to address the dysfunction. So, my parents and I often have a very surface relationship. It is what it is.

For some reason though, I am stuck on trying to save my brother from the pain I see in him. I know as a social worker I can not save somebody from their own pain, but I want to take it away from him so badly.

I want to take care of him, nurture him, look over him, guide him, support him and be there for him in a way my parents are not.

Every time I try, he pushes me away.

I remember getting my hopes up, several times, recently about 2 yrs ago when I found a way to communicate with him that for a time was working. We began to write lengthy emails to eachother, the longest conversations we've ever had. I do not ever remember having a lengthy conversation with him otherwise, and have only spent time with him alone on one occasion when we went to dinner, which was beyond awkward. I started emailing him, and for a brief period, he opened up. I suggested he see a psychiatrist, and that after noticing some patterns in him, and given my background in the mental health field, I thought he may be bi-polar.

To my surprise, he went to a psychiatrist, and my suspicion was unfortunately correct. He was diagnosed with a less severe form of bi-polar disorder. I knew from my work and educational experience that this would mean there was no quick fix, or easy answer. He would have a long road ahead of him. There were options though, and treatment is often very effective.

He began medication, but did not go to counseling, and soon gave up the meds. My hope was short lived. The emails stopped, phone calls ignored again, and soon we were back to where we had been for years.

My brother dropped out of college as an engineering major, has lost most of his friends, doesn't go out socially much, has given up his religion which used to mean so much to him (growing up Catholic, we all joked he would be a priest), has no relationship with his family, and now has just given up the most amazing woman that was in his life when he let Melissa go.

I told myself last year that I would not try anymore with him. I'd continually get hurt, letdown, and miss the relationship I did not have with him even more when I tried than when I did nothing.

I can't say goodbye to my brother though, I don't think I ever will be able to.

I pray for him daily that he will find what fulfills him and brings him joy.

I suggested recently again that maybe he try a new counselor, and that maybe he could find a better fit. He wasn't interested.

I invited him to lunch a few times over the past month. He canceled or didn't have the time.

I ask him to do things with me. He is busy.

I invite him to church, a place he once loved. That's not "him".

I simply try and talk to him, and only get shut out.

What is left for me to do?

I take comfort in knowing that even though I do not know if my brother is still personally close with God, God will take care of him.

Today began and I was doing my usual routine minus the Internet, my brother actually was not on my mind. I began my usual meditation, and began to pray. After praying for quite awhile in silence, I began praying for my brother, and kept praying. I then remembered I had a new Bible I had been saving. I wanted to give it to somebody who was searching, somebody who may want to know God but didn't, somebody that I prayed God could help.

The Bible has sat in a drawer for quite sometime.

I went to that drawer, got it out, opened to one of my favorite passages and read it aloud to myself:

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
-Isaiah 40:31

As I read this passage, I cried for my brother, my brother I do not know, my brother I so desperately want to see happy. I prayed that he would find comfort in the Lord, where he has never been able to find comfort in anything or anybody else, and that by God's will, he would be graced with a life he never knew like God graced upon me in my darkest of times.

I took the Bible, marked that passage with a pen and bookmarked it, and placed it on my brother's bed as my gift to him. I left it with no expectations, just a prayer that God take care of my brother.

When he came home and saw the Bible, he asked where it was from. I told him I did not know, with a smile. He knew it was from me. I then told him it was his, and he now had a Bible again of his own.

I had prepared myself that he very well may not be ready or open to me reaching out to him again. There is no sweet, perfect ending to this. Later that night I found the Bible I had given him, returned, in my room on my desk.

I have faith that it may not be this week, this month, or even this year, but that my brother will find God when he least expects it, and begin to see the world, and himself in a whole new perspective and light under a God I know loves him so much despite everything, and will continue to love him even if he never does love the Lord back.

God knows my brother, He has found my brother who was never lost to Him. It is my prayer I will one day find and know my little brother, Matt, and that he will find himself, and get to know God once again.