ILL 101: INTRODUCTION TO ILLNESS ADJUSTMENT
Laraine Herring, MFA, MA
School of Social and Behavioral Sciences
Office Hours: Tues/Thurs 1:45-3:30
Other times by appointment
CRN 32948, Tues/Thurs 11-12:15, room 3-271
ILL 101: Introduction to chronic physical illness and its many facets—physical, emotional, psychological—and its impact on the individual and the family. Special consideration is paid to the cultural, social and psychological effects of illness and a variety of adjustment strategies. 3 credits, lecture. Prerequisites: A diagnosis.
Translation: What does it mean to be ill, and how does illness impact the individual and his/her/their family and friends? How do we adjust to illness and how do we integrate it into our lives? How is our illness reflected in our communities and how do those reflections shape our own potential for recovery?
Your professor’s premise for the course: Sometimes the illness is the healing. (Whaaaa….??)
Your professor’s challenge to you: What wound is your illness the balm for? (I hear the f-u from you now, beloved student. Shout it out, and then come back to me.)
Bonus challenge: If you’ve identified the wound, can you swallow the medicine?
1) Types of chronic illnesses and progressions (cancer, diabetes, heart disease, arthritis, lupus, etc.)
2) Impact of illness on the individual
3) Impact of illness on the family
4) Psychological impact of illness
5) Cultural responses to illness
6) Health Care System Navigation (capitalization intentional because…the health care system is a living breathing entity)
7) Illness narratives
8) Adjustment strategies
At the completion of the course, the learner will be able to:
1) Identify and classify a wide variety of common illnesses and their stages (1)
2) Assess the impact of illness on an individual (2)
3) Assess the impact of illness on a family system (3)
4) Assess how illness impacts the individual’s psychological health (4)
5) Identify cultural responses to illness (5)
6) Successfully navigate the American health care system (6)
7) Identify current Illness Narrative and evaluate its efficacy (7)
8) Revise Illness Narrative as required (7)
9) Incorporate a variety of adjustment strategies to illness adaptation (8)
Text: There is no text for this course. (You think I’m saving you money, but I’m not. You’re in the course because you’re ill, so you’ll be paying more money than you will ever be able to earn to labs, doctors, hospitals, and insurance companies. Also, you are the text. Your flesh. Your organs. Your skin. Your mind. You create the experience. And no, I’m not saying you caused your illness had that one bad thought in 5th grade or you ate (or eat) red meat, or you believe (or don’t) in a god. I’m saying, and if you’re in this class you’ll understand, that at 3 am when you are awake and the world is moving on, the only text available to you is you. I recommend you write a compelling story.)
This course is pass/fail only. The ultimate outcome is beyond anyone’s control.
Are you alive at the end of the course? Pass.
Are you dead at the end of the course? Pass. (Who am I to say that death is not a successful achievement of the learning outcomes?)
Attendance is mandatory. You will find that no matter how well you rationalize things, you will not be able to rationalize your illness away. You can deny that we’re having class, but it won’t change your diagnosis. You can show up late, but you’ll still be in your own flesh of text. You might as well join us on time. Compartmentalization is for others. It’s no longer useful for you. Integration of every aspect of your life is required for successful completion of course objectives. Any part of you that you’ve cut yourself off from must now be heard. You’ve got to show up to hear them all.
Plagiarism is not only unethical, but absurd. You can’t copy another person’s illness, even if the diagnosis is the same as yours. You can’t copy another person’s prognosis or plan. Those statistics the docs want to give you about your chances? They’re not about you. They’re about numbers and numbers care nothing for the individual—for the variant in the data. You’re not data. Tattoo that on your flesh-text. (Or, OK, if you like numbers then be the statistical anomaly.)
You’ll forget who you are sometimes when you’re naked in a lab or pushed from one specialist to another or rolled into an MRI like carnitas in a burrito. Remember your name. The questions you are facing now are only yours, and the answers you are needing are also only yours. Cheat if you want, but each day that passes is, well, another day that passes. Do you know how many you have left?
Late work is OK, but see above. Do you know how many days you have left?
There is no extra credit.
Assignments: Specific requirements for each assignment will be handed out in class and posted online.
Journal: (Learning Outcomes 1-7) You’ll be asked to keep a daily journal throughout the semester. This is for your eyes only. No, there are no points assigned to it. Why do it then?
(I hear you. I know you’ve been conditioned through our great educational system to only do something if you’ll have a tangible reward. But come on, now that you’ve found yourself enrolled in this class, don’t you see how that’s not a system that ever applies in real life?)
The only thing that matters now are what your own eyes see. Train them to see what is in front of you, what is behind you, and what you imagine is in front of you. Anything goes in this journal—poems, notes, found articles, drawings and doodles, medical notes, fears, middle of the night terrors, dreams—the sole purpose here is for you to meet you.
(Hi there! I see you! Do you see you? It’s super-important now that you do.)
Research Project: (Learning Outcome 1) This is your chance to analyze what’s going on with you! Google-away at your peril. You won’t be able to resist the Google. It’s our modern Siren-song. But after you’ve fallen down the Google-hole-of-hell in which: Every. Single. Medical. Issue. You. Want. To. Research. Ends. In. Death…
perhaps consider other sources.
This project can be designed qualitatively or quantitatively, but must follow the scientific method discussed in class. Design your research question carefully and then design your study. What do you want to understand about your illness? Don’t forget to do a literature review prior to starting your research project. You don’t want to ask a question that someone else has already researched. Why does it matter if someone else has researched it? Well, what I think you’ll find is that any question that someone else has asked has only tangential bearing on your own situation. You might even find at the end of this research project that the research project was really about identifying a good question. That’s a success. Questions are signposts and illness requires you to create your own map. The only way to make your own map is to know what signposts need to be there. Handouts and examples will be provided.
Oral Presentation: (Learning Outcome 1) You’ll be presenting your research project’s findings to the class. Please use at least one visual aid (Powerpoint, YouTube, poster board, etc. Your own body may also be a visual aid.) Be prepared to field questions and defend your conclusions.
Medical Chart Map: (Learning Outcomes 1-2) Don’t skip this step. You can use charts, graphs, 3-D illustrations or printing, index cards, napkins—whatever medium you’ve gravitated to while adjusting to your diagnosis works. But do not skip this step. There is one ground rule for this activity. Only use the cold, hard, uninterested words. Don’t include your feelings about the words or your confusion about the words. Don’t include your stories about the words. We want to look at these words with detachment and with a critical eye. This is important so that we don’t identify with the diagnosis. A diagnosis is just a word. It is not a life.
Please include your DSM-V diagnos(es) if applicable.
Illness Family Tree: (Learning Outcomes 2-4) Here’s what you’ve been waiting for! A chance to blame your parents for your illness! Sorry. We’re not going to do that here because that’s not valuable.
First, fill in the relevant members of your family in the tree just like you did in kindergarten. If you don’t know who your biological family is, you can fill it in with the people who raised you. Biology is not as important here as belief. You can begin by filling in the physical diseases the members of your family have had if you like, but that’s not the stopping point. What matters is not what physical diseases may have been in your family’s history, but what beliefs and patterns you’ve taken on from each member of your family. “Oh finally!” you’re shouting. “Here’s where I can blame my parents!” Bzzzz! Still wrong answer. This is not about blame. This is about awareness of the ways you’ve integrated messaging—intentional or unintentional—and how those messages are impacting you today.
Things to consider:
* Is there a particular parent or family member you identify most closely with?
* What messaging did you receive from this person (useful and not useful)?
* Which messages are still operating in your own worldview?
A family is not strings of DNA. A family is a constellation of stories. Understanding the stories you’ve inherited is every bit as valuable as the genetic markers.
Just like in all our assignments, use any form that works: an actual tree, finger painting, a collage, a chart, a Play-doh sculpture—you pick! It’s your tree.
Cultural Traps Crazy Quilt: (Learning Outcome 5) Our intention here is to gather “squares” that represent cultural messaging you’ve heard around not just your illness, but also your gender or gender identity, your sexuality, your intelligence, your worth—the list is endless. Your illness is not you. You are multi-faceted and you must examine holistically the impacts of all your life’s encounters and how the whole of you can approach your illness.
The center of your quilt is a representation of your essence. The squares surrounding your essence representation are comprised of the messages that have been sent to you. Examples: Did you eat sugar? or If you’d have had children, you wouldn’t have gotten uterine cancer. or I didn’t think you could get that if you weren’t gay. or Wow. I didn’t know you were gay. Here’s a prayer for that. or What makes you think you can ______? or You should have exercised more. or What were you wearing that made ____ do _____? or No one else in our family has that… You get the picture.
Don’t freak out if you can’t sew. I failed home ec, so I won’t be monitoring the precision of your stitches. If you don’t want to make an actual quilt, you can make a digital one, or an image board on Pinterest, or a Powerpoint cluster, or a mixed-media collage. Don’t let the form limit your experience.
(Are you noticing how that last sentence pertains to so much more than class? Don’t get it yet? Carry on.)
Insurance Company Puzzle Box: (Learning Outcome 6) I know you want to skip this one, but you can’t because the bills will keep coming. First the Explanation of Benefits forms (EOBs) will come if you are fortunate enough to have any sort of health insurance. Then the bills for the portion the insurance company didn’t cover will come. Sometimes they come within days. Sometimes within years of the service provided. Sometimes they’ll match up with the EOB form. Sometimes they won’t and you’ll have to…CALL THE INSURANCE COMPANY. Or worse. CALL THE SERVICE PROVIDER.
Construct your own puzzle box of the paths your billings have taken since your diagnosis. Of course the puzzle box can be digital, but it would be really cool if it were made of knotty pine just like … oh shit … a coffin.
Illness Narrative Project: (Learning Outcome 7) The Illness Narrative comprises an integration of all the messaging you’ve heard about your illness and (and don’t skip this step) your methodical acceptance, dismissal and applicable revisions to those messages. This is the culminating project of the semester. You might choose to do an oral history presentation, something akin to Story Corps. Or you might write your own book and have it professionally bound. Or you might make an e-zine or a blog or an Instagram feed or a podcast. These are your stories. Claim the ones that serve you and present them to the world.
(Dramatic stomping on, setting fire to, and/or castrating the stories that no longer serve you is encouraged. But, after you’ve stomped and burned and castrated, take a breath and say thank you because those stories delivered you to your revised and updated edition. They’re now the mulch in which your new words will bloom. Don’t skip that step.)
Adjustment Portfolio: (Learning Outcome 8) What tools and tips have you uncovered to help you navigate the various limbs of an illness diagnosis? Create a portfolio that showcases what you’ve learned. Make it accessible to others.
This can take any form that suits your temperament. Go old school with a Rolodex or digital with an Excel sheet or make a RolodExcel (you make it—I made the word up!)
A Welcome Note from Your Professor:
Hey, you. You’ll notice there’s no assignment calendar or outline. I’ve learned there’s not much point to that when addressing illness adjustment. We’ll be working through all the activities together and each class period will be both surprising and expected. Perhaps you’re noticing this about your days now. As you gain more understanding of your illness, you’re feeling more familiar with it, more comfort around it. But still, it can surprise. It can manifest in an unusual way. It can wake you from sleep.* And I don’t mean the REM-kind.
I can’t actually tell you how to do this thing. Does that bug you? You can drop now and still get your money back. But honestly, don’t you wish your professors had told you something like that from the beginning? That’s one of our earliest mistakes in education. We lead students to believe that we can tell them how to do the thing they’re trying to learn to do, but all we can do is share the ways that we’ve learned to do the thing. Students must find their own path. The “thing” isn’t even the same thing from person to person.
I redirect you to my Bonus Challenge: If you’ve identified the wound, can you swallow the medicine?
See you Tuesday!
All my love,
*Note to self: Make waking up a learning outcome.
Laraine Herring is a full time psychology and creative writing professor. Her work has recently appeared in The Manifest-Station, K'in, Tiferet, and Vice Versa. Her most recent book, On Being Stuck: Tapping into the Creative Power of Writers Block, was published in 2016 from Shambhala. Other books include Writing Begins with the Breath (Shambhala), Lost Fathers: How Women Can Heal from Adolescent Father Loss (Hazelden) and the novel Gathering Lights: A Novel of San Francisco (Concentrium). Her fiction has won the Barbara Deming Award for Women and her nonfiction has been nominated for a Pushcart Prize.