The What and the How of Mindfulness

There are six core skills in the Dialectical Behavior Therapy (DBT) Mindfulness module, separated into two groups of three. The “what” skills describe what mindfulness is and the “how” skills describe how to do it.

“What” Skills

Observe: Notice what is happening around you. Notice the environment and the people. Notice what you can experience with your five senses. Observing is not putting words on the experience, just being aware.

Describe: Now is when you put words on the experience. Tell yourself what you are observing.

Participate: Throw yourself completely into the moment. Don’t hold anything back.

The “what” skills build upon one another. You cannot describe without first observing. You cannot participate without first observing and describing.

It can be difficult to separate the three skills. My therapist gives the example of being in a room. You observe when you notice that the walls are painted. You describe when you tell yourself that the paint color is beige. You participate when you remember the paint color after leaving the room.

“How” Skills

One-Mindfully: Focus on only one task or thought. If your mind drifts, bring it back. If there is an interruption, such as a phone call, switch your attention fully to the call and then return to the original task. Do not multitask. Multitasking leads to errors, and actually takes longer than completing one task before starting the next.

Effectively: Do what works in the situation. Let go of stubbornness. I am reminded of a work situation where I needed someone’s help to complete a task. There were steps I could have taken to make progress while waiting, but I behaved ineffectively and stopped all work during my long wait for a response.

Non-Judgmentally: Let go of right and wrong. Do not label things as good or bad. If you must label, use phrasing such as healthy vs. unhealthy. If you find yourself judging, don’t judge yourself for judging. It is virtually impossible not to have some judgmental thoughts. This does not mean you have failed at being non-judgmental. Reinterpret the situation in a non-judgmental way.

Applying for SSDI and SSI

This history of my application, appeal, hearing, and approval process for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) is intended to give readers a glimpse into the steps in the process and some tips for their own application. It is not a definitive guide to SSDI/SSI.

My first of three initial applications for SSDI/SSI was submitted in April 2015. I had been out of work since the beginning of December 2014, having quit my full-time warehouse job due to significant work stress leading to multiple hospitalizations. I was promptly rejected, because I did not have enough work credits for my age. The number of credits required goes up as you get older, based on the assumption that you had more opportunity for work. Unfortunately, I had spent a total of five years housebound due to severe anxiety, but had not received any sort of diagnosis or treatment, so I could not deduct that time from my eligible work years.

I needed about 6 more months of work to be eligible, so I applied for a job at a local hospital. It was less than part-time, and even if the hours had been available I could not have worked full-time. However, I assumed that working would make it impossible to get approved.

I applied again in June 2016. I was still working, but I believe my therapist at the time encouraged me to re-apply. I was scheduled for an assessment by a psychologist I had never met, which mostly consisted of him testing my memory and subtraction skills – nothing to do with the actual limitations caused by my disability! Another unfortunate event here, as I was told to bring someone with me to the appointment. My mother and I drove there separately and in the middle of my assessment she knocked at the psychologist’s office door. When he opened the door, she said, “Hospital. Now. Love you.” I freaked and was like, “What hospital? Why?” She said, “Christ. Transplant,” and rushed off.

Mom had a kidney transplant when I was 16, and after 17 years it failed. She’d been on dialysis for about 3 years at this point, and got the call that a kidney was available during my assessment. Needless to say, I was excited for her, which conveyed to the psychologist that I was not actually depressed, and distracted by my desire to get to the hospital, which prevented me from expressing how my disability affects my capacity for work. I received a rejection letter a couple of days later.

TIP: Appeal your rejection.

I did not appeal my rejection, as I had received an acceptance letter to return to college the same day as mom’s transplant and my ill-fated psychologist appointment. Again, I made the assumption that this would prevent my approval, so I dropped it.

I started college part-time. I continued my work at the hospital. In January I was hired to work at a mental health organization, and turned in my 2 weeks’ notice at the hospital. My new job lasted for 5 months before I was so desperately ill that I had to quit. I was still making the assumption that my “success” in college would prevent approval. I was maintaining a 4.0 GPA, but at great cost to my mental health. I only attended part-time and still experienced numerous hospitalizations. It was only through the grace of a very dedicated advisor that I managed to stick with it.

At some point, someone (possibly my current therapist) persuaded me to apply again. I submitted that application, again at the initial step of the process, in December 2017. I was rejected quickly. I submitted the appeal form immediately, adding any new developments since my application. I was again rejected, although a little more time passed.

In May 2018, I hired a local disability attorney. From there, the only work I had to do was to answer questions when he asked. In our initial meeting I brought him any paperwork I already had on hand, and provided him with a list of all doctors I’d seen and hospitals I’d stayed in. He requested any missing files, and submitted it all to the Social Security Administration (SSA). The lawyer stated that it was a ridiculous case, and given the paperwork I had submitted it should have been approved on the initial application.

The estimated time frame for a hearing before the judge was 18 months. I had mine almost exactly 12 months after hiring the lawyer, in May 2019. Three days after my much-awaited graduation from college. My therapist drove me to the nearest major city for the hearing. She was not allowed in the room, because my lawyer did not think it was necessary for her to testify.

In the room, aside from myself and my lawyer, were the judge, an employment expert, and a court reporter. The hearing was also audio recorded. My lawyer made a statement, I made a statement. We made sure to emphasize two factors: the difficulty with which my college degree had been obtained, and the fact that even when I was externally appearing to function at a job, I was self-harming in secret.

Tip: Talk about your worst symptoms on your worst days. It’s humiliating and degrading, but you will not win the case by sugarcoating how bad your symptoms can be.

The employment expert requested clarification on some issues pertaining to my past employment. Then the judge gave her a scenario full of legal mumbo-jumbo based on how she had interpreted my situation, and asked if there were any jobs I could do. The employment specialist stated that I could be a floor waxer or industrial cleaner. My lawyer and I managed not to laugh at the fact that those would both be a fast-track to suicide due to boredom and lack of purpose. The judge then gave her the same scenario, with the added detail of missing two days of work per month. The employment specialist stated that this would be completely incompatible with work.

The judge thanked us and stated that I would receive her decision in the mail within six weeks. I expected it to be the full six weeks and come back unfavorable. My lawyer had warned me that this judge was very careful to review all the information, and that she denied a larger percentage of his cases than he thought appropriate.

I was utterly shocked – and terrified – when her decision arrived in a mere two weeks. I was utterly shocked – and delighted – when it stated “fully favorable”. My disability date was set at the date I had left my last job in July 2017.

Back pay is calculated starting five months after the disability date, so I had accumulated back pay from the beginning of December 2017 to sometime in July 2019 when I started receiving payments. I do not recall the exact amount I had signed over to my lawyer in the contract. I believe it was 25-30%. I was okay with this, as it was still a decent chunk of money, plus the monthly payments, which I would never have received without his help.

So began a series of very confusing letters. It is now April 2020 and everything has just recently settled into predictability. So here’s the sort of things to expect after being approved:

  • Back Pay: Back pay depends on the disability date the judge sets and is subject to the lawyer’s fee.
  • Monthly SSDI Payment Amount: This will be set based on your work credits, and increases annually for a cost-of-living adjustment.
  • SSI Approval: If approved, you will receive a separate payment monthly. I was approved, but initially given no payment as I was living with my mother and they deducted estimated housing expenses. When I purchased a home, I had to go back to the SSA office and provide documentation of all my new expenses in order to start receiving SSI.
  • Loss/Reduction of Public Benefits: My monthly SNAP amount fell drastically once I was approved for SSDI.
  • Transition to Medicaid: I lost my special state health insurance plan in October 2019 and it was replaced with traditional Medicaid, which has much greater restrictions on which providers I can use.
  • Addition of Medicare: My Medicare coverage began in January 2020. I now have it as my primary insurance, and the 20% it does not cover then gets submitted to Medicaid as secondary insurance. Medicare is a NIGHTMARE. I was automatically enrolled in Part A (hospitalization) and Part B (doctor’s visits), with the option to decline Part B. I also had the option to sign up for Part D (prescriptions). Part A is free. Part B and D are deducted from the monthly SSDI payment, but in most cases these premiums can be covered by the state if the recipient also has Medicaid.
  • Part D NIGHTMARES: The plan I chose was supposed to be paid by the state, and even if it wasn’t, I had a letter from SSA saying it was being deducted from my monthly SSDI payment. It was, and the Part D provider repeatedly tried to double-bill me for the premium and gave me incorrect information in a really nasty tone when I called multiple times to straighten it out. Also, with Medicaid I never had to pay for prescriptions, but now I have a co-pay. There is an Extra Help program that reduced the cost of the copay to no more than $3.60 per prescription, but I have repeatedly been billed more and then received a refund check in the mail.

For a very long time, I felt like the approval wasn’t worth it. I was drowning in all this new and confusing paperwork, and feeling very down on myself about being ill enough to qualify. I promise it gets better once the kinks are worked out. I hardly ever tell my therapist I’m worthless anymore (at least not for the reason of receiving SSDI).

The best part is, there are a ton of resources out there after approval. I will talk more about Vocational Rehabilitation (VR) in the future, but my VR counselor referred me for benefits counseling, where I learned a ton about my options for trying to go back to work, special savings accounts I could open (some with matching programs), and applying to have my student loans forgiven. All these steps are very much a work-in-progress, but I will happily share information as I learn more.

DBT: A Primer

Dialectical Behavior Therapy (DBT) is a therapeutic program created by Dr. Marsha Linehan. The first edition of her skills training manual and client handouts was published in 1993, with a revised edition published in 2014. DBT is based on a blend of Cognitive Behavioral Therapy (CBT) and Buddhist principles. The program was originally designed to treat Borderline Personality Disorder (BPD), but has since been expanded for a number of mental health issues. As one of my former therapists said, “Everyone needs these skills. Some people just didn’t learn them from their parents.”

In addition to Dr. Linehan’s manuals, there are many other materials available about DBT, including workbooks, skills for children, and decks of skills cards. The one I have used most is from Moonshine Consulting. It has simplified versions of some skills, as well as a few new skills not discussed by Dr. Linehan.

DBT is made up of four modules: Mindfulness, Distress Tolerance, Emotion Regulation, and Interpersonal Effectiveness. This is not the order they are presented in the material, but I placed them in this order because it seems like the most logical progression for building upon earlier skills. I will be elaborating on specific skills in future posts, so here I present a brief description of each module.

Mindfulness

Mindfulness is the act of staying focused on one task in the present moment. Not multitasking, not living in the past or future. Mindfulness primarily consists of the three “what” skills and the three “how” skills.

Distress Tolerance

The purpose of Distress Tolerance is “to tolerate distress”, as I sarcastically say each time my therapist asks. Of course, I follow up with the serious answer. Distress Tolerance is a set of skills to be used to cope in difficult, painful, intense situations without making the situation worse. This module is not about fixing. It’s about damage control.

Emotion Regulation

Emotion Regulation picks up after distress has been tolerated. This module is for understanding the source and function of our emotions and learning not to let them control our actions.

Interpersonal Effectiveness

Interpersonal Effectiveness does what it says on the tin. It teaches us how to interact with others in ways that meet our needs. How to ask for help and set boundaries. How to do these things in ways that show respect for both ourselves and the other party.

That, in a tiny nutshell, is DBT. There are two main components to a DBT program: group and individual therapy. In group therapy, we learn the skills. In individual, we can have focused guidance on applying the skills and working through our trouble spots.

A feature of DBT that can bring some frustration and resistance is diary cards. Both group and individual diary cards ask the client to note which DBT skills are used throughout the week. An individual diary card also asks for information on emotions and impulses that were experienced and/or acted upon. Ideally the client would fill this in daily, but in my experience most (including me!) are going to wait until right before the appointment and frantically scribble it in to the best of their memory.

Top Reads of 2019

I know I’ve kind of vanished from blogging.  Still here, just super busy.  I did manage my GoodReads goal of 24 books this year and am bumping it up to 36 for 2020.  Here are my top reads from the past year, in no particular order:

IMG_20200101_173326009.jpg[Not pictured: Bird Box by Josh Malerman.  Read the Kindle edition on my phone.]

  1. Bird Box by Josh Malerman: I had seen exactly 5 seconds of previews for the movie and accidentally stumbled on a list of “scariest books we’ve ever read”.  This was on the list and it said it was way scarier than the movie.  Of course I would read the book first anyway, but that intrigued me, because movies have the advantage of visual effects and sounds for scare factor.  Read straight through this and was totally freaked out in a very enjoyable way.
  2. All the Bright Places by Jennifer Niven: I had some Barnes & Noble gift cards and was browsing the website’s section of YA books because they are easy reads and usually pretty good.  I’d never heard of this one, but it starts out with two teens in a clock tower, potentially ready to jump, so I was curious.  This book saved my life.  I can’t go into detail without spoilers, but trust me that it was so good I ended up buying the pocket version and the Spanish version as well (reading it in Spanish is a goal for next year).  There’s also a movie coming to Netflix in February so read it now to be prepared!
  3. Five Feet Apart by Rachael Lippincott: Another book from my YA kick, this one was already out as a movie when I read it.  I didn’t really know what I’d think, but I had a friend whose son has cystic fibrosis and she wasn’t sure if she could handle reading it, so I read it to give her my advice on whether to try or not.  It would have been intense for her, I think, but worth it, in the same way that I push my way through books about suicide and self-harm.
  4. Girl in Pieces by Kathleen Glasgow: Aaaaaaand….here’s the book on self-harm.  I wish I could get everyone I know to read this.  There are a number of really bad books out there that include characters who self-harm and they just don’t get the motivations right.  This one does.  It should…I knew within the first chapter that the author was writing from personal experience.
  5. The Mindful Mom-to-Be by Lori Bregman: I went through a long span of baby fever this year and was reading everything I could on pregnancy and childbirth.  This book had a lot of great information for those who want to get through pregnancy and childbirth using natural remedies, birthing methods, etc.
  6. Miss Peregrine’s Home for Peculiar Children by Ransom Riggs: I actually saw the movie first, something I rarely do, and was terribly confused reading the book due to the movie covering the whole trilogy.  So putting that out here: if you’ve seen the movie and want to read about that, you’re committing to a trilogy.  I totally loved the inclusion of pictures of the peculiars throughout the book.
  7. To Kill a Mockingbird by Harper Lee: Yes, I made it to 39-years-old without reading what is typically a high school English assignment.  You see, my school had remedial English, English, and college prep English.  Instead of reading the same material but processing it at different levels, we were assigned completely different material, so basically anything that was considered a universally assigned book by the world of my teen years?  Not assigned to me.  I really was just tired of not getting the references made in pop culture, and someone gave me this book, so I went ahead and read it and was shocked to find out it was actually GOOD unlike so many of the “classics”.

Top Reads of 2018

As usual, I’m writing a little about my favorite books that I’ve read this year.  I know the year isn’t quite over, but I’m not in a place where I can really sit down and read more.  I wanted to get an update onto the blog, because it’s been 6 months and I swear I haven’t vanished.

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(Not pictured: Luckiest Girl Alive by Jessica Knoll)

In order by date read:

1. How to Be Interesting: An Instruction Manual by Jessica Hagy: A book of diagrams explaining, well, how to be interesting.  An example, not from the book:

Image result for jessica hagy

I loved it because it was simple advice in a simple format, that really made me think about how I was living.

2. Luckiest Girl Alive by Jessica Knoll: I ran out of Gillian Flynn books to read and this had praise from Gillian Flynn.  It’s a similar style with the story unraveling slowly through present and flashbacks, and you will absolutely not expect what is coming.

3. Every Day by David Levithan: I saw a preview for the movie and whenever I get excited about a preview I go read the book instead.  Absolutely read this book.  It is simply impossible for the movie to have captured what goes on inside the character’s mind while traveling from body to body.  While the premise sounds weird (well, it is pretty weird), the author took it seriously with good results.

4. Constructive Wallowing: How to Beat Bad Feelings By Letting Yourself Have Them by Tina Gilbertson: My list is actually a little light on the self-help books this year.  This one was my favorite, because it acknowledged that emotions serve a purpose in our lives and we need to experience them in order to overcome being bound by them.  It was advice people can actually follow without feeling that they are in some way inferior.

5. The Time Traveler’s Wife by Audrey Niffenegger:  This premise may be even weirder than that in Every Day, but it is absolutely beautifully executed.  It’s a love story with real meat to it, and I promise you will be impressed just trying to wrap your mind around how the author planned out all the details in this book.

Top Reads of 2017

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2017 was a light year for reading.  I had to make my way through several lengthy textbooks and that plus the struggles I had with my mental health led to not reading nearly as many books as in recent years.  Thus, I only found three to be highly recommended.

  1. The Buddha and the Borderline by Kiera Van Gelder – A memoir about recovering from Borderline Personality Disorder, this book artfully describes the reality of living with the disorder and how Dialectical Behavior Therapy (and its roots in Buddhism) led the author to a more manageable life.
  2. Turtles All the Way Down by John Green – This is a mystery in the vein of the author’s past book, Paper Towns, only the main character spends much of the time caught up in “invasives” – the obsessive thoughts that Obsessive Compulsive Disorder is named for.  The descriptions of her thought processes are very poetic and insightful.
  3. No Mud, No Lotus by Thich Nhat Hanh – Inspired by The Buddha and the Borderline, I began reading books on Buddhism.  Among several books I read in a short span, this one on relieving suffering helped me the most.  In DBT group we often discuss how rumination turns pain into suffering, and I have a strong tendency toward rumination.

Top Reads of 2016

Last year I failed to complete my Goodreads challenge.  In 2015, my goal was 48 books, or 4 per month.  I bumped it up to 52 books for 2016, thinking I could manage a book per week.  Perhaps this would have worked out, but I returned to college and some of the books I read were lengthy textbooks, which took time away from that last 4 books I needed.

I’ve set my goal back at 48 books for 2017.  There will still be lengthy textbooks, but maybe I’ve better learned how to juggle the necessary reading with the fun reading.

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[Not pictured: Mr. Penumbra’s 24-Hour Bookstore and Spark Joy: An Illustrated Master Class On the Art of Organizing and Tidying Up.]

  1. Mr. Penumbra’s 24-Hour Bookstore by Robin Sloan – I read my first book of 2016 in one day, during my last stay in the inpatient psych unit.  I was admitted late on January 2nd, and January 3rd was a Sunday so there were no groups to attend that day.  I pulled this, the only decent-sounding book, off the bookshelf and curled up in bed and read all day.  I’d recommend it for anyone who was able to look past historical inaccuracies and enjoy The DaVinci Code for the fun story it is.  It also evoked images of the TV show Warehouse 13.  I wouldn’t say it is directly comparable to either of these things, but I feel those are reasons I enjoyed it.
  2. The Happiness Trap: How to Stop Struggling and Start Living: A Guide to ACT by Russ Harris – Sadie printed an article by Russ Harris out for me, which was a brief introduction to the content of this book.  I use some of his techniques frequently.  If you have trouble with getting stuck on negative thoughts, read this for ideas on how to accept them as just thoughts and let them go.
  3. The Sherlockian by Graham Moore – If you enjoyed any of the Sherlock Holmes books, you must read this.  It weaves a continuation of Sherlock’s story with a modern story about a Sherlock fan trying to solve a crime.
  4. The Tortilla Curtain by T.C. Boyle – You will probably cry more than once during this book about immigrants from Mexico and residents of gated communities who want to keep the Mexicans away, but it’s wonderfully written with rich details and interconnected storylines.
  5. Spark Joy: An Illustrated Master Class On the Art of Organizing and Tidying Up by Marie Kondo – This is definitely a love-or-hate book.  Obviously I loved it.  I haven’t exactly finished the tidying up, but I did get through all my clothes and donated a bunch of stuff that didn’t “spark joy”.  I also learned better ways to fold clothes that are stored in drawers.  If you are the type of person to care about decluttering, I’m sure you’ll find at least a couple of helpful ideas.