Simple...but not easy

In 2000-2001, I was a switchboard operator in Baltimore, MD. On slow days I worked on organizing the storage room and one day I found some cassette tapes of Les Brown's and Zig Ziglar's. I wasn't familiar with these guys, but I liked what I read on the tape sleeves. They had been there so long that no one who was still working there remembered buying them and my wonderful boss, Pam said I could take them home.

I listened to those tapes in my car during my commutes, many things that I heard were foreign concepts to me at that time but I remember sitting in the parking lot of my apartment complex after a long drive home because I wanted to hear more!

Thanks to SimpleReminders.com for bringing back a wonderful memory! You can check out their Facebook page here.
if you are interested in following me on Facebook as well, I welcome you to the journey!

It's a trilogy! (Letting the words fall out Part 3)

I had no idea when I started writing about this that there would be 3 parts, but in response to a few people asking if the  Creative Director ( the silent one who had not responded to the dissension in the ranks on the FB page)  knew about the situation- (I was not the only one who had an issue with this) or if I had told him my feelings - I did - and confusion over which director did what, this should clarify.  I had been working on an email to him but I was an emotional wreck for days after the show; I couldn't stop crying long enough to form a coherent though. He sent me an email during that time to which I was able to reply. This is how he "addressed" my concerns on 6/11/2013:

Hello Jordan,Before anything else I just wanted to say that it's been really nice having you back in and around the fold of (REDACTED), I'm happy you came back and decided to retake all the Levels!I'm very aware of the Facebook and show weirdness that happened recently. Between that and your health I'm not sure which way you are leaning towards auditioning on the 29th and would like to get that clarified!If for some reason you are not thinking of auditioning are you still interested in taking classes or doing workshops or being involved in practice groups etc. What would that look like to you?Any and all answers are ok :)Talk soon

Very friendly, zen and non-confrontational, which is true to his nature in the ten years I've known him. He stated his awareness of the issue yet did nothing to address it, apologize or try to make it better. The other interesting part - no other troupe member who left (even for years) was ever asked to audition - at least two other people who had been gone for years were allowed to just return to rehearsals and yet, I was required to take and pay for all three levels of the classes - he did give me discount since I was a previous member, so that was helpful,. But, after I raise my concerns about the troupe encouraging rape culture, now it is a requirement for me to re-audition. I would have had no/very little issue with this if it was applied to everyone equally. Fairness is important to me and I think treating people fairly is ESSENTIAL to have a successful business over the long term.

My response:  (which because I was dictating and didn't know how to use it yet, It sent my first unfinished draft below before I was done)

6/19/2013
Hey M.
Thank You! I have had a blast taking your classes and really value the atmosphere of safety you created with us throughout all of the levels. :)
So, the short answer, is no. C. made it clear in posts on the Facebook page as well as in private messages to me if it that's anyone who is offended by anything should leave because (REDACTED) wasn't going to change.
One of the reasons I brought it up is that I cried all the way home and most of the night, but while I was there working the table* no one would have thought I was bothered at all. 

The above sent before I was done, so the next email on 6/20/2013 said this:

And now, the rest of the story (In my best Paul Harvey voice)

One of the things I want to clarify is - Yes, I was upset by the comment in the show. I don't think it was appropriate but, it's improv, it's quick & can be messy. My real issue came with the things C. posted on the page and telling me in private messages* that I was "pushing an agenda" and what I was saying was "BS".  (I am no longer replying to his messages because they were personal attacks and beyond unprofessional.)
I  think that as a business (especially a non-profit one) the image (REDACTED) projects is important to its success. I think this is a crucial time with the troupe, especially with so many new people in classes, auditions around the corner and a theatre in the works. I think that the type of comedy you want (REDACTED)  to do is a business consideration. What is done on stage in a thoughtless moment will affect people more than we will ever know - it sticks with them for years - good or bad...
It has been over nine years since I was raped and the casual mention of it in a place I thought I was safe made me cry all night. I spent the next two days actively trying to put my feelings into an email to you directly about this, but it was still too emotionally charged of a subect. I know that other survivors encounter this with comedy shows already and I felt safe endorsing (REDACTED)  to those people. I no longer do. 
Since 1 in 3 women in the US have been sexual assaulted (http://www.turningpointservices.org/Sexual%20Assault%20-%20Statistics.htm)  and women are a significant part of your audience, it would be an erroneous assumption to think that I was the only one in the audience that night who wouldn't think rape was funny. Statiscally, at least 10 women in that audience are survivors as well. As a survivor myself, I acknowledge my personal bias and sensitivity on the subject. It is a bias and sensitivity shared by many, though, and most survivors don't bring these things up because of the exact response I received on the page. 
So, that is the long story behind why I won't be auditioning. As for the rest, I am very interested in continuing to work with those in Level 3 and also very interested in learning more long form. I think a long form class would be great! The environment that you created in class was wonderfully fun, funny AND safe.  I did not have the same experience when I went to 's class which is why I didn't go back to his classes, so (as you have probably figured out)  I wouldn't be interested in taking the class if he is teaching it. 
Thank you so much for asking and for reading all of this. It means so much :) 

After pouring my heart out in an attempt to help him understand where I was coming from - I received absolutely no response. - that was NINE MONTHS AGO. Ignoring an issue doesn't make it disappear. I kept my commitment to perform in the level 3 showcase that shortly followed - the players I met in those classes are wonderful people that I had a fabulous time playing/performing with.

The only responses I received in regard to resolving the issue were from the other director, C., in the form of direct messages to me. I have redacted the name of the Improv Troupe.

And for you to even associate (REDACTED) with rape culture PISSES me off beyond anything I will ever post in a public forum. How dare you... Really... If you wanna take that agenda and push it, take it some where else because what you dis was bull shit and I think you know it... You once thanked me for calling you on your bullshit, so I am doing it again at the sake of losing you as a friend. 

Linking (REDACTED) to a rape culture was pure bullshit all the way around, and if you wantto defend it, go ahead, but I was DEEPLY offended by that. Those people, including Jon are some of the most caring people and would give the shirt of their backs. That is why I was pissed. Having a conversation is one thing, attacking is another. And I am proud, very proud of what we have done and what we are doing, but you used Pride as a bad thing. And if you knew me in any way, you know that my pride is the least of anyone's worries...

Some of the examples of the resistance in the FB group from the same guy:

CC: "I know that a line was crossed with underage wife, and was quickly let go, but underage wife is something that has gone on for all of history, and still legal in many states. I guess underage wife implies sex, but not un-consensual sex."

I then posted the video of the show since  what was said was actually "Underage girls"

CC: "You are right, he did say underage girls... When I listed at work, I had it turned low. Well if you listen, you also here me yelling "hey hey hey..." So it was quick and it went away quickly... In the end, it was dealt with quickly and went away quickly. I did not hear a single complaint from a member of the audience and while it was a hiccup, it still was a good show over all."

Thankfully another troupe member explained where I was coming from because CC's "logic" made my head want to go kablooey.

I think Jordan was pointing out that sex within marriage is not automatically sex with consent--correct me if I'm wrong there, Jordan.

YEP, that was indeed my issue with condoning it because he thought he said wife.  His "agreement" statement made even less sense.

CC: I agree with you  and Jordan. Rape is rape no matter what the situation is, but there was nothing in that scene that made that connection even if it went to underage girls, or underage wives or underage anything...

So,  "Rape is rape no matter what the situation is," but he doesn't see the connection of how having sex with someone who is underage IS RAPE.. The statutory rape laws are there for a number of reasons, an underage rape victim is not legally able to give consent and - since this seems to be a level of confusion that is entirely to widespread, lets clarify for those who still do not get it:

-SEX WITHOUT CONSENT IS RAPE.
-UNDERAGE PEOPLE CAN NOT GIVE CONSENT.
 (or those who are drunk or passed out or say NO -that means that they are NOT consenting and what he calls "sex" the law calls statutory rape . This law is in place for many reasons, one being to prevent and adult taking sexual advantage of a minor. )

Another rationale comes from the fact that minors are generally economically, socially, and legally unequal to adults. By making it illegal for an adult to have sex with a minor, statutory rape laws aim to give the minor some protection against adults in a position of power over the youth.^[2]
Did you know? Historically a man could defend himself against statutory rape charges by proving that his victim was already sexually experienced prior to their encounter (and thus not subject to being corrupted by the defendant).^[11] A requirement that the victim be "of previously chaste character" remained in effect in some U.S. states until as late as the 1990s

Letting the words fall out - Part Two

I'm sad and my heart is heavy.  I  saw a rape joke on a FaceBook page that I have followed for years and has never triggered me before; it's been a safe place. It blindsided me and upset me. I replied on the thread where the image was posted  - I addressed the person who posted the image in an attempt to start a dialogue to raise awareness about how painful it is to see other people mock and laugh at my (and every survivors) pain. Almost every man that I have discussed this with (and a few women) believe emphatically that anyone who can't laugh at a rape joke is just "too sensitive".
I knew it was likely that someone would respond that way when I posted what I did. I just really didn't think it would be the guy who ran the page. It's more difficult when it comes from someone  that I thought would actually care that their page triggered me. I tried to offer an alternate perspective (that of a survivor with PTSD) and felt I was very respectful about it. I sent him a direct message after there was no acknowledgement to my comment but he had replied to others and to let him know why I was "unfollowing" him. (These parenthetical , italicized additions are my reactions, but not something I got to share with him since he blocked me from replying after getting out everything HE wanted to say and  I guess not liking my replies) 

The message I sent him:

ME: You often post musings about why someone unfollows you - I will tell why I just clicked the unfollow button (and will be stopping the automatic monthly donation I have been sending) so there is no need to speculate. Your actions: Clicking on like on the rape joke pic and then clicking unlike after I posted my issue with it, and your inaction: failing to address it in any way (pm me and/or remove the image are 2 examples). If you are comfortable having images/"jokes" like that on your page then I am not comfortable being there.

ZD: I've been traveling -- and this is obviously something you are super sensitive about. (Making an excuse and then blaming me for being triggered. Saying someone is "super sensitive" is just another way of saying "It's not that bad" which is one the worst things to say)  I didn't interpret that image to be a "rape joke", nor do I think most naturally would. (So - if most people wouldn't see it that way then I shouldn't have a problem with it either?  This belief is also completely dependent on the company you keep and the people you expose yourself to.  If you exhibit through your words and actions that you condone something then people are more reluctant to share their dissenting opinion, so this speaks volumes about him, IMO) If it isn't a joke about rape, then I guess it could be called an allusion to rape, a trivialization of rape, the objectification of women by literally comparing them to an object to be empties and broken or a misogynistic joke -  none of which are ok by me.)  However, someone sensitive to such things would -- and I can clearly see how it could/is [SIC] interpretted that way. Which is also why I removed my [SIC] life from it.  (He meant "like") However, I have had a number of issues when trying to moderate things from my phone, (Another excuse, still no apology) therefore I chose to wait until I was able to do so from my laptop. Which I've been on for all of about 30 minutes now -- and have been tied up with non facebook related admin stuff. (If he understood PTSD, I think this would have been more of a priority for him to at the very least send me a message or give me a call - he has my phone number because I offered to listen when he was going through a difficult time. I don't have his or I would have been happy to have a telephonic discourse . Even a message saying that he will address it even if he couldn't feasibly do so at the moment would have gone a looooong way.)  So I do apologize  (Oooh - finally an apology?!)  for not dealing with an issue you are obviously sensitive about in a timely fashion or a manner you saw fit. (When an apology includes that many qualifications, it negates any meaning the apology may have intended. Basically - I'm sorry YOU have an issue, but it is YOUR FAULT for being sensitive about it. Blaming me for being too sensitive in the guise of an apology - disgusting - that is not an apology. An apology is " a regretful acknowledgment of an offense or failure. ". 
That doesn't mean I wasn't going to address it. (Back to defensive.)  I appreciate your feedback, however. So thank you. (Every statement of his  preceding this one indicates my feedback counts for absolutely nothing since it is all because I am "super sensitive".

ME: The assumption that most people don't see the description of assaulting a clearly female and clearly resistant ("I couldn't make him stop, I couldn't yell or scream") victim (which only in the last line is discovered not to be human as the prose suggests) as a problem IS a problem and the wording seems very clear that it is implying rape.

ZD: I've refunded your 2 last payments. That's as far back as I can go. (Money is the last thing I wanted out of this emotional transaction, a refund hadn't occurred to me, I just stopped the future donations because I do my best to "put my money where my mouth is".)  And I am aware that is IS a problem. (ALL evidence to the contrary - if you are aware there is a problem then why are you perpetuating it?)   No need to lecture me. (Lecture, Really? Just a minute ago you valued my feedback and now that I have disagreed with your perception of rape culture, I'm lecturing? FFS.)

ME: Being "super sensitive" is a valuable quality depending on your point of view. Starting out with blaming language towards me for being super [SIC] senstive doesn't seem like you are aware 


ZD: I take issue with the fact that you think that it is something I am "OK" with. (That is generally what it means when someone clicks that Facebook "Like" button) And rather than open up a discourse with me to address it,  (I addressed the person who posted the image on a thread YOU posted on a page YOU operate in social media -wouldn't that be considered opening up a discourse? ) you chose to make it personal (Maybe if you went home from what was supposed to be a date with your ass bleeding from being forcibly sodomized you would take people laughing about it a tad personally, too) and disconnect from me as a means to deal with it. (Removing myself from places and situations that trigger me is a HEALTHY thing to do. For you to expect me to stay in a community that posts such harmful material further indicates your lack of empathy and understanding of the situation. ) All you had to do was talk to me. (So you could tell me that I'm being "super sensitive"? Yeah, that was not helpful.)
 ZD: You really took a leap of bad logic there.  (Not according to professionals who are actually familiar PTSD)

"In regard to external triggers, we can take some steps to manage our environment (for example, not going to certain places that we know will trigger us)"

ZD: And gave me not a shred of the benefit of the doubt. (When you clicked "Like" on such an offensive image, didn't click Like on my response to it or acknowledge my issue in any way but took the time to reply to someone else on the thread after my post, you -quite reasonably in my opinion - lost the benefit of the doubt. )  ZD: Again, I apologize that I didn't deal with matters as you saw fit. (For anyone looking to issue a meaningless and insincere apology, that line conveys that message perfectly. )
ZD: Good luck to you. (Again, with everything else that he said in this message prior, this reeks of insincerity.)

When I tried to reply i got the notification that he had blocked me. He has removed the picture although I'm not sure why since he didn't see the problem with it, and didn't think " most naturally would. " 

The entire conversation was so contrary to the public image he presents of himself and what I have seen of him online over the last few years and the inspirational quotes and images he posts. He takes the time to graphically enhance wonderful quotes, many of which I agree with. I have learned, however, that people show you who they are by their ACTIONS not their empty words.  If he had taken his own advice or lived by the content he was posting I think the conversation would have been very different. Maybe he would understand that I was coming from a place very similar to this: 

Or if he had actually been coming from this point of view:

“It’s not that bad.”

This is a wonderful piece by Aaron Paquette who also has a free PDF book available here.

“It’s not that bad.”

Said in compassion, these are still four words that nullify another person’s experience.

It takes away their right to mourn, to grieve, to experience defeat or loss. It says, “YOU don’t know how you feel, but I do.”

I used to be guilty of this, and probably will be again at some point if I am not present. It’s natural for us to want to minimize someone’s suffering or to offer a different perspective (especially if WE are the problem!) and so we say:

“It’s not that bad.”

If you really want to connect with someone and help them, you have to be willing to take a risk, to open yourself up, to be okay with pain.

Instead of taking away someone’s right to their experience, help them understand it on their own terms, in their own way.

Ask, “How bad is it?”

And allow the reply.

It might be uncomfortable to hear the truth, but it’s the only way to get through something, really process it and grow.

“How bad is it?”

Now you can have a healing conversation.

Because sometimes it’s really bad, and a burden too hard to carry.

And sometimes it’s not so bad after all, once someone is allowed to look at the situation without constraints or conditions.

A lot of people feel that you must NEVER focus on the bad or bad things will happen. Just keep your mind exclusively positive ALL the time.

That is denying the very purpose and path of experience and growth. That philosophy can be unhealthy when taken to extremes.

If you don’t freely acknowledge where the struggles are and what they are, you simply steal your opportunity to learn!

This also works for the state of the world.

And it’s a very good way to diagnose something honestly and then to work toward making it better.

After all, once you know how deep it goes, you have the map for getting back out again.

And so, “How bad is it” can eventually become, “So what’s left that’s good?” And “How much more amazing can it get?”

There is hope for you, for me, for All Our Relations.

And it starts by allowing the truth of the moment, of a struggle, of a feeling, to be expressed.

It starts with that level of gentle kindness and humility.

Hiy hiy

"Letting the words fall out..."

The sun is coming up, the birds are tweeting and my body starts to release the tension that is keeping me from sleeping at night. And then, on what I considered to be a "safe" page on facebook - I saw this image:

I have only been able to sleep during the night once -last night- over the last 3-4 weeks because of the PTSD flashbacks and this topic enrages me on a good day. Performing in comedy for a few years (stand up and improv) this is something I encountered a lot and for many years I just sat silently, swallowing my rage.

I finally spoke up after a joke about rape was made in an improv show billed as "family friendly", but it still took me awhile. I sobbed all the way home after the show and then gave myself a very short hair cut that night, which is a pattern I have of trying to make myself less attractive when I feel threatened) I spoke up about it in the discussion forum for the group; I was belittled, criticized and ignored, as was everyone else who disagreed with the co-director.

I joined the troupe in 2004, performed actively for years, supported from the audience when I wasn't performing and yet when I raised my concern the co-director (who joined the troupe after I did,  FWIW) told me that if I had an issue with the way they did comedy that I shouldn't be there. Oh! I remembered I actually have the file since this was a conversation on a forum so I can quote him directly. Keep in mind, this troupe is an actual business with donors and paying customers - it has taken all of my will power not to review them honestly and accurately on their facebook page, yelp, etc. (Which wasn't helped whenI saw an entire album  on their page of photos I took of the players that they didn't bother to give proper photo credit for, but, I digress...)

"If you have a filter that may get agitated, be warned. Those lines are crossed all the time.... ALL THE TIME..... If you can not handle that, then improv may not be the form for you. " 

Which is complete and utter bullshit. Comedy can be done in a number of ways, some prefer to work "blue" and that's their choice, but it is not in anyway indicative of improv as a whole. Jezebel had a great article about this:

the best comics use their art to call bullshit on those terrible parts of life and make them better, not worse.

This taught me that some people value defending their actions more than examining the motivations for them and that my loyalty to the troupe wasn't valued - by the co-director who told me to leave or the Executive director who demonstrated how little my loyalty meant by failing to address it at all. Ever. It happened  last summer and still not even an apology. I have already lost some friendships over the issue and I have learned that if someone doesn't understand how harmful words -especially words that trivialize rape- can be then they don't belong in my life.  I am actively working to overcome the traumas of my past and keeping company with those that trivialize my pain just doesn't make sense. That lesson enabled me to speak my truth in today's situation immediately (and not shove it down like I used to) and with less fear of losing "friends".

So this was my response to the "funny" beer picture:
I understand that in American culture making fun of rape has become popular and that critics of such "jokes" are usually criticized for being too sensitive and not being able to take a joke. That is a risk I am compelled to take in this case. The image you posted describes a violent rape in detail (not to mention comparing women to a beer bottle to be used & broken). I have always considered (name redacted)'s page to be a safe place but to me (and likely to the 1/4 women who have been sexually assaulted) reading that image was a huge trigger. I implore you to consider re-reading those words from the point of view of a rape survivor with PTSD and keep in mind that an American is sexually assaulted every two minutes. (http://www.rainn.org/statistics)
"He grabbed me around my slender neck
I could not call or scream
He dragged me to his dingy room,
Where we could not be seen.
He tore away my flimsy wrap,
and took upon my form.
I was so cold, damp and scared,
While he was hot and warm.
His fervent lips he pressed to mine.
I gave him every drop.
He drained me of my very self,
I couldn't make him stop.
He made me what I am today. "

Out of suffering...

There have only been a few books that when I encountered them I was simply compelled to buy, without any prior knowledge of the author.  The Prophet, by Kahil Gibran is one of those books. I saw it in a thrift store in Virginia in the 90's and although I couldn't tell what it was about at first glance, it immediately resonated with my soul.

Books have been one of my favorite escapes for as long as I can remember. I've been told that my mother read to me often when I was very little and I was reading by the time I turned four. When they were loading my mother in the ambulance I was calmly perusing my bookshelf to decide which books to bring. During childhood summers I  remember reading about a book a day.  Lovely fantasy worlds that I needed to visit frequently to survive the reality of mine. One of my favorites that I read over and over again was about a teenage American girl who found out that she was switched at birth with a princess. By the time I was in junior high I had turned to Stephen King and RL Stine. Even when I was grounded from everything else (which was often)  my mother still allowed me to read; she recognized it's importance and I am grateful for that. Not all of my memories of reading are happy ones...

We were on a long road trip, I was about 7 or 8, my parents were arguing in the front seat. I was reading in the back seat. It was approaching dusk and my dad told me to stop reading because it was bad for my eyes to read in low light. I closed the book and looked out the window for awhile. When the arguing got too much for me, I picked up my book again; escaping to another world in my mind was my only coping technique at the time. I tried to be sneaky about it and no one noticed for awhile, but eventually my dad realized it. He pulled the car over on the side of the freeway and told me to get out as he took off his belt. I wasn't really surprised, I knew this was a risk I was taking by disobeying. He had me walk around to the back of the car and put my hands on the hood; the familiar sound of the belt sounded different in the open air than it did inside the house. I looked around as the belt hit me again and again, we were almost to the overpass, but I couldn't quite see if there was water or another road beneath it. One car passed, he kept hitting, the rest of my family sat silently in the car. Another car passed. I stared at the back of their heads through the rear window; they didn't even turn around. Another car, and another.

Further astonishment at the failure of our healthcare system

And other rants...

I started paying taxes when I was 14 at a summer job and worked throughout the rest of my high school years, in my senior year working two part time  jobs. I've worked consistently and hard ever since - the longest time without a job before I became disabled was after being laid off when the company I was working for went bankrupt & I collected unemployment for 5 months. I didn't linger on public assistance and the only thing I feel entitled to is receiving the benefits that I paid into the social security system - it is social security INSURANCE  after all.

in·sur·ance noun
1. a practice or arrangement by which a company or government agency provides a guarantee of compensation for specified loss, damage, illness, or death in return for payment of a premium.

But instead, the government took  5 long years to finally approve my disability claim, denying it again and again despite multiple doctors disagreeing with them. How many people can afford to pay their bills for 5 years without an income? I couldn't. This resulted in multiple evictions and a credit rating that was so bad I couldn't even open a credit union account. I sold everything I could, including, eventually, my car.  When I was finally approved for disability benefits, every penny that I received from food stamps over the years I spent waiting was paid back - and I am ok with that.  Although, that money (About $6,000 I think)  would have been enough to get a car again and become more independent from the government but instead it was given back to the system - and there are countless examples of  how wasteful the government is with funds  (according to this source nearly $30 billion was wasted in 2013 - that's billion with a B!) Yet, so many people complain than the needy & "entitled" people are draining the system and the cause of our deficit. *sigh*

When my monthly disability check kicked in, I no longer qualified to receive AHCCCS, despite there being a 24 month waiting period from the governments "date of disability" (which doesn't start until 6 months after the date the Doctors declare permanent disability)  for medicare to kick in. So, for 30 months, someone who the government acknowledges is disabled (and therefore, logically, in need of ongoing and expensive medical services) is left to fend for themselves - and more than likely with horrible credit.  My situation is far from unique, the SSA says it takes an average of about 2 years for a claim to be approved - that is if they approve it the first time, which basically only happens any faster when you are on your death bed.

Lack of affordable health care is still preventing me from getting the treatment I need and I am far from the only one.  In 1998 this woman was charged more than $50,000 for one of the procedures recommended for me by the neurosurgeon- a laminectomy, and in 2008 this guy avoided the $75,000-$100,000 it would have cost to get the multi-level lumbar disc replacement surgery that the  the orthopedic surgeon recommended for me - by being part of a medical study for the experimental discs. Those are just two handiest examples of countless others going through this or worse.

 I finally (with much assistance from Kendra at Representative Ron Barber's office) got medicaid pushed through and back dated to January 1st, 2014 (which has little impact considering the surgeons wouldn't even schedule an appointment until I had Insurance). I finally got in to see the spinal surgeon on February 24 and on March 1st my medicare kicked in.  Apparently this happens automatically (and they deduct the premium automatically) if you don't mail them back the card saying you don't want it. The fact that I can not get to the mailbox in my wheelchair makes that difficult and now if I cancel it there is a penalty. I don't know what the penalty would be yet because the number that is supposed to answer these questions has had a message for the last 2 days stating they are unable to take calls due to technical difficulties and the day before that they hung up on me several times after waiting on hold.  There is  program that if I can work they will let me keep both insurances and pay the premium. They're main # is also unavailable due to technical difficulties. I called their non-toll free number & left a message.*

Having medicare makes receiving health care much LESS attainable in my circumstances - the math of someone on a fixed income (not just me, but true for so many marginalized populations, your parents and grandparents, disabled veterans) paying 20% of their surgeries and hospitalizations, not to mention monthly prescription costs and specialist co-pays....granted, math isn't my strong suit, but because the premium is 10% of my income , my rent is 50%  of my income,  and since I'm not medically cleared to lift more than 5 pounds I have to pay to have groceries delivered - not cheap, plus utilities and I do choose to spend on internet, but no cable. As it is, I was living paycheck to paycheck and now that the premium has been deducted automatically, this means calls to the utility company to request an extension and that the groceries I bought at the beginning of the month have  to last until my April check comes in.

With a lot of effort I can shower twice a week now - up from once a week. Still can't do laundry. I have 4 pair of pants that fit enough not to fall down too much and they haven't been clean in awhile. Since I got out of the hospital on January 27th to be exact. A friend and neighbor went out of her way to insure that I came home to clean dishes & laundry in addition to taking care of my dear Charly & Glitch while I was in the hospital.

My doctor referred me to a home health care place which can provide medical equipment to make maneuvering in a wheel chair easier, but also a portable ramp that would allow me to traverse the steps and go for a "roll". The other important thing that has been Doctor recommended since last April - shower bars. I managed to spend my savings on a shower chair, cane and grabber, but that in addition to my chiropractic bills & the veterinarian bills for Charly  have left me without the option to pay for those things out of pocket anymore. If it hadn't been for a friend giving me a wheelchair then I would be much worse off.  But the bottom line is,  had it been handled appropriately, I would have had my insurance on January 1st and would have made some actual progress - I think I could have at least gotten the recommended epidural shot before it switched to Medicare since it took about a month to schedule through Indian Health (after many, many calls - they originally set it for August and even though I would have to go to a medical center 2 hours away for the procedure, they could set it up 6 weeks sooner than through the Orthopedic Institute.  There is a fair chance that the epidural shot would relieve enough of the symptoms to delay having surgery, although it wouldn't solve any of the structural damage to the discs, it would reduce the nerve inflammation enough that it wouldn't be compressing the nerve that limits my ability to stand and I could regain a decent amount of function.

The spinal surgeon confirmed what my PCP told me, that the feeling I have already lost in my left leg is gone forever and there is nothing they can do to get it back. Eventually the compression of the L4 sciatic nerve  would cause the same permanent damage to the nerve that allows me to stand (which is already shaky & my leg drops like a ton a bricks with no warning). Hmmm, permanent nerve damage that prevents standing or feeling -what's that called again? Oh, yeah, permanent paralysis!  

According to ALTCS (a program for long term health care issues designed to help people who fall off of medicaid but still have medical needs)  I don't qualify for help from them either because , although I can not safely reach or stand things in the kitchen to prepare  food the representative sat in my living room and said "It doesn't matter if you can't reach food to prepare it, as long as you can lift a spoon from the plate to your mouth" they can't cover me.

(Luckily?) I rarely have visitors and of the handful (well, I think 5 would be a handful and I've had four regular visitors, so handful-ish) that I have had over the last 6 weeks , I've known two for a decade and two for more than 6 years. Thankfully, they care enough *not* to care how dirty and smelly my clothes are.

I've lost one visitor for good - the one who called me "Love Bug" and as hard as it is to further diminish  my social circle, (and my ego boosts) he had been lying about a pretty important thing - the state of his marriage. When I figured that important detail out everything changed. As of yesterday I told him not to contact me anymore and go to counseling with his wife. I am SO ready to break the pattern of falling for unavailable men and I look forward to the day when I can easily go out in the world, which I'm convinced will drastically increase my chances of meeting one versus not being stuck in my apartment.

One of my neighbors has been walking my dog for the last week which is great, Charly needs to get out and I certainly can't take her. The challenge has been that the time she can walk her is about 10am and I'm still not getting to sleep before dawn-ish.

*Got a call back and I spoke to a representative about the "Freedom to Work" (FTW) program  - which would allow me to keep both AHCCCS (our state version of medicaid) AND medicare. It would also cover my premium & whatever my co-insurance would be. However, she wouldn't give me a minimum amount of hours I need to work to qualify, and it took several minutes of asking the same question - how do I know how much tax to pay- to get an answer. She kept talking around my questions and told me I would have to estimate it, finally she said that I had to pay 10% of whatever income I earned to the IRS in quarterly taxes - submit the ledger of my hours, money order for paying 3 months of taxes and the month after I began paying taxes on this income then the FTW benefits would kick in. She did confirm that the book contract I signed doesn't count as employment and said there was no assistance/guidance to help people become self-employed (which I had heard there was).

TL;DR:
If I could get the treatment I need then I would be able to work enough to qualify to get the medical treatment I need to be able to work.  Quite the catch-22 the system has in place.