My Journey To Being An Advocate For The Mentally Ill

My birthday is coming up in a few days.  I’ll be 37 years old this year.  That would have made me a senior citizen in the Stone Age.  Of course if I would have developed schizophrenia at most points in human history, it probably would have been a death sentence.  As it is I have found what works and what doesn’t in my life with mental illness.

I was first diagnosed with schizophrenia and major depression in the autumn of 2000.  I was in the second year of my pre med studies in college.  Even though I had been having problems with depression and anxiety for a few years before, I was still able to do well in school and keep up a strong front.  I still don’t know how I did it.  But in my second year of college, it all collapsed.  I couldn’t handle stress anymore.  I was having constant panic attacks.  I would have breakdowns where I called home and yelled at my parents at least once a week.  Looking back on it, I should have gone to the mental hospital right then and there and not tried to gut out college at the same time.  As it was I withdrew from college at midterm of the spring semester and took a few months to adjust the treatments and pull myself together.  After the disaster that my second year of college was, I knew I’d never get into any med school with my grades.  So I switched over to business because, let’s face it, everything involves money and commerce.  I still thought I could be employable in the right situation after college.

During the last few years of college I became interested in economics and finance.  I applied for several jobs like financial planner, insurance sales, insurance underwriter, loan officer at a few banks, etc.  I took the obsession I previously had with science and was able to transfer it to business and economics.  It paid off to be curious for me.  I graduated in spring 2004 but, like many college seniors, I had several job interviews but no offers when I left school.  I didn’t realize just how common that was until I started talking to people over the internet a few years later.

After a few failed attempts at careers in various fields, (retail sales, academia, manufacturing), I applied for disability insurance.  This was in 2006.  I had just lost my job at the university and been forced to leave the masters’ program.  Here I was on a waiting list for disability, on a waiting list for low income housing, with no job, no confidence, and no money.  If it wasn’t for my parents help for the first half of 2006, I would have never made rent on my apartment.  But that wasn’t all for 2006.  My longtime college girlfriend and I broke up and I failed at a couple minimum wage jobs, one of which was at Goodwill.  If you can’t succeed at Goodwill, then you are really screwed up (or so I thought).  In the late summer I checked myself into the mental health hospital.  Stayed there for a week.  By this time I was at my lowest ebb.  I had no job.  My illness wasn’t allowing me to hold a job.  I had no real income.  I was living off food stamps though no mess ups of my own.  I had no idea when social security was coming through. I was on high risk insurance that was costing my parents a lot of money so I could stay on my meds.  I never could have afforded them on my own.  I came to the conclusion I would never hold a career because of my mental illness.  I came to the second conclusion that I would never marry and have a family because of my mental illness.  I was really sad and depressed during this entire time.  I really thought I’d never be happy or amount to anything ever again.  I’m glad I didn’t cross the line into becoming suicidal at this time.

Those rough years of my mid to late twenties when I came to the conclusions I would never hold meaningful employment or have a family really sucked.  But they were also when I was writing a lot, granted not as focused as I am now.  Before I got serious about my blog I wrote hundreds of poems, largely in the style of Robert Frost, Walt Whitman, and Emily Dickinson, and I also did complete rough drafts for two novels.  The novels were nothing really special, just kind of like Jack Kerouac for Millennials.  I was working on notes for a science fiction novel at this time too.  I also read every day to try to help me find a literary voice.  I read dozens of authors, ranging from Kurt Vonnegut to Ayn Rand, Chuck Philhanuak to John Grisham, Alexandre Dumas to Mark Twain, Adam Smith to Nietcheze, etc.  I tried to teach myself Spanish at the time as well, but the only Spanish I know is how to ask for directions and order simple meals.  But as my ‘traditional’ side was falling apart, I was finding other ways to find meaning in my life besides work and dating.

I started writing down my thoughts and experiences with mental illness in my late twenties.  I was submitting some of my poems to be published in literary magazines.  I got a few of them published but never made any money.  I eventually wrote a few dozen short essays about life with a mental illness.  I was reading The Federalist Papers at the time and kind of modeled the book of mental health essays on that.  I put the files on a print on demand service.  I sold a few dozen of those books, mostly to friends, family, and interested mental health facilities.  After tasting a little success with those essays, I thought they might make good blog entries.  And my first few blog entries were from that original book.  Since it’s been several years since I updated that book, I probably ought to rewrite it and repost it.  And since I now have a dozens of blog entries on the subject of living with mental illness, I definitely have new material for another edition.

I started blogging through wordpress in 2012 shortly after I left my last ‘traditional’ job.  I didn’t get much for visitors early on because I had no focus for the blog and I wasn’t posting regularly.  In early 2013 I decided to focus the blog specifically on mental illness.  My audiences have grown slowly but steadily over the last few years.  I started a Facebook page to promote the blog.  I also have a patreon account a few months ago and I already have a sponsor through there.  And I’ve also made a little money since I monetized this blog.  I’m not breaking even yet with what I spent on advertising this blog, but it’s getting closer all the time.  I recently broke 14,000 all time visitors from 100 different countries.  And this is with only four years of work, a microscopic advertising budget, a niche topic, and 50 percent of the world’s population still not online.

I’ll be 37 in a few days.  And I already had a larger reach with my writing works than I ever thought possible when I first seriously started writing in 2004.  That’s been only thirteen years.  I think I’m going to keep at this and see what I can develop with this blog and my writings over the next thirteen years.  I say all of this to point out that young people in their late teens and early twenties shouldn’t sell themselves short at all.  At age 23 I would have been content to be a loan officer at a bank or an insurance salesman.  But I know I wouldn’t have been content doing such work.  I wouldn’t be doing what I’m really good at.  And let’s face it, in this day and age a person can make money doing almost anything thanks to the exposure of the internet if they put in the time and lots of effort to get noticed.  I’ve already accomplished more than I thought I could as a writer thanks to the internet, especially when I started out I was just writing poetry out in notebooks.  And now after running this blog for four years and getting some audience and dozens of positive emails, I know I’m only scratching the surface of what can be done.  I never would have thought this possible when I first applied for disability insurance.  Mental illness is one of the few things that is still discriminated against with little to no protest.  I intend to be part of changing that.  I’m not going away.  The mentally ill bloggers and you tubers aren’t going away either.  We will not be silent and suffer needlessly anymore.  Consider this a declaration of war against mental illness stigma.

 

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Loneliness and Depression

Haven’t been out that much the last few days besides getting a little sunshine everyday, at least on days the sun is shining.  We’ve been getting rain everyday it seems for almost two weeks.  So I’ve been living off my food reserves and rarely leaving the apartment the last few days.

Not that I really mind.  Sometimes it’s therapeutic just being alone with my thoughts for hours on end.  It takes me a long time to fall asleep anymore, but I spend most of the time trying to fall asleep allowing my mind to wander.  I am sometimes my own best company.

In the past I’ve tried day programs designed for mentally ill people.  But much of what went on seemed quite remedial to me, almost like a rehash of grade school.  I found such programs quite boring and didn’t make any friends there.

I’m finding it harder to make friends the older I get.  Most people my age have careers and families.  I really can’t relate to either one.  And some people don’t want to friend me because I don’t have a family or a career.  And it’s really tough making friends in my apartment complex anymore.  Half of the people in my complex are senior citizens, and some of them seem resentful that I live in low income housing with them.  The other half are people with chronic illnesses and developmental disabilities.  It can get lonely in here at times.  I know that spending most of my life alone isn’t healthy.  But many people I just can’t relate to because I’m terrible at small talk.  Too bad there aren’t communes for eccentric people like me with a variety of interests.  Kind of like dormitory living for adults.  I know, not going to happen.

The depression occasionally crops up.  Fortunately the delusions and paranoia hasn’t followed.  I have lost interest in many things I once found enjoyable.  I no longer like travel.  I no longer like fishing.  I don’t even read as much as I used to.  Maybe I’m entering a new phase of my illness.  In a lot of ways, the illness itself is much easier to cope with than ten to fifteen years ago.  But I still do get kind of sad when I look at my friends and people I went to school with and I get to see what they’ve accomplished and their families.  I definitely feel like I’m missing out.  At least I can still write about these issues.  It’s the closest thing to a career I’ll ever have.

Problems Socializing

Been a few days since I last wrote.  But that is mainly because I really haven’t had any real ups or downs.  I’ve been quite stable for several days.  Haven’t felt any real anxiety or depression for any true length of time.  I still spend most of my time alone without much for physical interaction.  But I still interact with friends and family via phone calls and Facebook.  I don’t mind being alone as much as I used to.  It’s a routine that doesn’t cause me stress and anxiety.  I just see no need to interact with my neighbors much as I really have no interest in talking about mundane things like weather and complex gossip.  I just have no use for that kind of information I can pick up on my own within seconds.  I don’t have to rehash the same mundane nonsense over and over again.  It bores me and irritates me.  I mean, seriously, please tell me something I don’t already know.  Or better yet, tell me something that is interesting.

Naturally many people I have met over the years have thought I was aloof, arrogant, and anti social.  This is mainly because I have interests outside of my home community, sports, and politics.  It was tough growing up in an era before the internet in an isolated village.  I was annoyed at how everyone in my village thought my business was their business.  This bothered me even in grade school.  I had always heard “If you’re not up to anything bad, it shouldn’t matter who knows”.  No.  Most people I knew and know today are really judgmental of anyone outside of the accepted norm.  I am outside of the norm on just about everything.  Playing football in high school was probably the only thing I did growing up that many people would have thought normal.  No I don’t like mindless chit chat.  No I don’t like chasing women.  No I don’t like most of what is on tv.  There’s a lot of things I like that most people don’t care at all about.  I like discussing the possibilities of future science and technology.  I like discussing history.  I like discussing philosophy.  I like discussing classical literature.  I like writing.  I like reading.  It seems that most people I know haven’t read a book since high school.  And if any of likes or dislikes makes me appear as an elitist intellectual snob, than so be it.  We need more people who try to think rather than just through life sub conscious.

None of these social problems are made easier by having schizophrenia.  But at least having mental illness and problems socializing has taught me who is and who isn’t trustworthy.  I may not have lots of social contacts, but I do have some amazing family and friends.  And in the end, isn’t that what life is all about?

The Joys of Owning Less “Stuff”

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Bought a couple new computer games a few days ago.  So I have been spending my time trying to figure those out.  I bought those games as online downloads.  So I don’t need actual CDs for the games anymore.  With as fast as new Windows programs come out anymore, I’ve been burned a few times when my old games wouldn’t run on my newer programs.  I’ve decided I’m just going to subscribe to online gaming forums and just buy my games as downloads and let the forums do the dirty work.  Seems to me that eventually I may not have to own much of anything besides some furniture, some clothes, a couple computers, a smart phone, etc.  I am definitely looking forward to when driverless cars go mainstream and I don’t even need to own a car anymore.  Seems to me that by the time I get to be in my late 60s (my parents age) I just won’t have to own much of anything if everything keeps getting digitized.  I can dream, can’t I?

I’m still trying to simplify my life.  I have pretty well adapted to minimalism.  But sometimes I still hold onto books even though 80 percent of what I read anymore is online articles and audiobooks.  Even these I’ll probably give away if I end up moving. Ideally I’d like to get down to where I could throw everything I own into my car and be on the move within an afternoon if need be.  As far as a bed or shelves are concerned, I can pick up different ones for cheap at Wal Mart or Salvation Army.  I have never been nostalgic about furniture or most of my possessions.

I really don’t mind not owning much.  I could never be a hoarder.  And from what I’ve seen, more and more people my age and younger are becoming like this all the time.  I imagine some people are worried about the Millennial generations being chronic renters and that it might be bad for the economy.  But, who wants to sign a 30 year mortgage on a house when a job could be outsourced or automated at a moment’s notice?  My brother owns a cool house in a good neighborhood, but he’d be in trouble if he got laid off from his company and had to sell his house, take his four kids out of school, and drag the entire family across country to find a similar job.  Even my friends and relatives that have kids have fewer kids than their parents and grandparents had.  My generation may not be putting down physical community roots as much as previous generations.  But humans have traditionally been a nomadic species, going wherever there was better hunting or farmland.  I don’t expect this to change.  But thanks to the boom in communications tech, it is so much easier to stay in touch even if you are on the other side of the planet.

It’s amazing just in my own life how much “stuff” I don’t have to own now compared to fifteen years ago.  I used to own over one hundred music CDs, dozens of DVDs, several shelves of books, etc.  Now I have access to a much larger stash of music for 10 dollars a month through Spotify.  I have a larger book collection now even though over 90 percent of my books are now e files that I got for free.  I have access to pretty much every movie I could ever want through Netflix, amazon, youtube, etc.  I don’t need an address book as long as I have a Facebook account.  I buy most of my clothing online anymore.  Even though it costs a little more this way, I can find exactly what I want as long as I’m willing to look.  I’m no longer at the mercy of Wal Mart, K Mart, JC Penney, etc.  I literally haven’t been to Wal Mart since last fall because I can shop from home on my computer anymore.  And I love it.  About the only things I don’t buy online now are groceries, gas for my car, and my prescription medications.  Even with my medications, the only time I actually deal with a human is when I go to physically pick my stuff up.  Who knows what the next fifteen years will bring?  I can hardly wait to find out.

Major Changes May Be Coming

There have been some developments coming about over the last several weeks, so some updates are in order.  My parents are seriously thinking about moving out of state to be closer to their grandkids.  And I have decided that, barring any static from Social Security, I’m going to be moving with them should they decide to go through with this.

Naturally I don’t have much of an idea of where to start with the whole deal.  I imagine I’m going to need to contact my local Social Security office and let them know I might be moving out of state.  I don’t know how long this kind of change over is going to take.  And there is the prospect of my having to find a place near my parents.  So far as far as we can tell, all of the low income places have waiting lists.  It is possible I might be couch surfing with my parents or my brother for several months until something comes open.

I have no idea how I’m going to transfer my medicaid out of state.  I might even be able to qualify for more programs because I’ll be in an urban area.  My home state of Nebraska doesn’t usually give much of extra benefits and we do have one of the lowest costs of living in the country.

In short, it is quite possible that there are going to be some major changes in the coming weeks and months.  I’ll keep everyone posted.