Skip to main content

View Diary: Dear Food Police (246 comments)

Comment Preferences

  •  I applied for SSDI in October (7+ / 0-)

    Both short term and long term - while my doctor tells me my multiple diagnoses will qualify me - it could be a year before I am approved and who knows how long after that before I actually see any money.

    My personal preference is that I am only short term and can find a way to live productively with my illnesses - it's fucking boring and depressing as hell to not work.  I'm a smart man with a head full of squirrels, ADD, OCD, a couple of minor learning disabilities and autism - officially the squirrels are called schizophrenia.

    I am blessed that my symptoms are relatively mild for a schizophrenic and I can tell the difference between the hallucinations and reality most of the time - and prefer reality very much.  I always take my medication as directed, even when I feel good, but my biochemistry is such that I build up tolerances and we have to keep changing the medication to manage my symptoms - and the side effects of some of those medications are pretty fucking awful.

    One of the ones I'm on now controls the hallucinations pretty well, but affects my motor control.  Another one has completely screwed my internal thermostat so I am constantly overheated unless I'm in a room at about 65F in shorts and a tee shirt.  Some of them have given me seizures, panic attacks and extreme paranoia, made me suicidal and depressed to the point I couldn't move faster than a snail while constantly crying for reasons I couldn't articulate to anyone else.

    I wouldn't wish this on anyone.  Once upon a time, I was funny and thinner, didn't lurch around like a drunken sailor, have double vision and went to work every day with a smile and helped people.  It terrifies me that I may never be able to do those things again.  

    It shames me that there are days I can't get out of bed other than to use the loo and take a cold shower because I'm burning up all the time. Or go out in the sunlight. Or live in my own home on my own.

    If we can find a way to manage all of that that lets me be functional again - I'm all for it.  I'm not looking for a permanent vacation on $900 a month for the rest of my life - I have a lot more to give if I could just control what's going on in my head and with my body.

    I want to be well again.  I didn't do anything to get sick, it's just the luck of the genetic draw.  The powerlessness of having your mind and body betray you on a daily basis is humbling and terrifying.

    I wouldn't wish it on anyone.

    And we sail and we sail and we never see land, just the rum in the bottle and a pipe in my hand...

    by Mortifyd on Thu Mar 21, 2013 at 10:01:28 PM PDT

    [ Parent ]

    •  have you ever worked? (0+ / 0-)

      You are...what...43?

      How many years in your life have you worked?

      _"Love is the rosebud of an hour; Friendship the everlasting flower."_ Brook Boothby

      by Keith930 on Thu Mar 21, 2013 at 10:13:24 PM PDT

      [ Parent ]

      •  I can't speak for Mortifyd (7+ / 0-)

        But as far as I'm concerned, that's none of your fucking business.

        As for me, there was a time in my life (around the beginning of the disability) when I was divorced with two small children, attending college full-time, working part time, and trying to raise my children.

        I worked until I couldn't anymore. And then I worked volunteer work because if you crash while working they're less likely to fire a volunteer and you don't make any money anyway - but it makes you feel good about yourself.

        And I tutored math at home for as long as I could - then ended up moving clear across the country and lost my network of students.

        Got sick enough that just getting up to go to the kitchen was torturous.

        I'm a little better now, but not much. Not enough.

        I help others when I can, and as I said, I clean up the lake behind our condos whenever my body will allow it.

        I'm volunteering it because it's MY choice to do so.

        I'm 53 years old, and I've contributed quite a lot to the community in my lifetime. Left a decent legacy behind with my volunteer work, thank you.

        But I'm sick to death of people trying to shame me or anyone else because we can't work. I didn't ask to have fucked up DNA. Nobody asks for that.

        Walk a mile in my shoes - if you can get that far.

        And then maybe learn a little empathy.

        "We have only the moral ground we actually inhabit, not the moral ground we claim." - It Really Is That Important

        by Diogenes2008 on Thu Mar 21, 2013 at 10:19:04 PM PDT

        [ Parent ]

        •  And yeah... (3+ / 0-)
          Recommended by:
          Mortifyd, Avila, FloridaSNMOM

          I know I'm coming off as angry, but this matters a great deal to me.

          Just sick of having so little control over what happens to me... being disabled is like being slapped in the face. And then society reaches out and slaps you again, just to make sure you get the message that you are a second-class citizen.

          Your education doesn't matter, the amount of work you've put in during your lifetime doesn't matter, the help you've given others... your heart, your soul, your character....

          All washed away in a heartbeat because all people see is "poor".

          And somehow that translates to "lazy, uneducated, undeserving, stupid, ignorant...."

          It does hurt. I just wish people understood without having to go through it themselves.

          "We have only the moral ground we actually inhabit, not the moral ground we claim." - It Really Is That Important

          by Diogenes2008 on Thu Mar 21, 2013 at 10:41:14 PM PDT

          [ Parent ]

      •  since I was 12 - not that it's your concern (8+ / 0-)

        and yes, I DID pay taxes on my babysitting money.  I had a diabetic brother no one else would care for when my parents had required military events - so I gained a reputation as a reliable and mature sitter and worked 6 days a week during some periods of my life.  I also worked in a barn to pay for my riding lessons shoveling horseshit, McDonalds and a host of other "teen" jobs - I'm no trust fund baby sitting on my ass going OMG it's hard.

        I graduated at 16 and then moved out at 17.  I worked all through jr high and high school and beyond.  I went to college and worked full time then as well - dropping out when I had to choose between bills and tuition in my senior year.

        So yeah, I've worked plenty.  And if you think it's easy to be a schizophrenic when medical care is tied to work - and that there is no stigma to having a mental illness in the working world - I have a bridge you can buy.

        And we sail and we sail and we never see land, just the rum in the bottle and a pipe in my hand...

        by Mortifyd on Thu Mar 21, 2013 at 10:39:54 PM PDT

        [ Parent ]

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site