Bonnie Ruane Wheeler

Syllabus: Advanced Stage Vascular Ehlers-Danlos Syndrome Course

Professor: The professor position remains unfilled. While multiple candidates with impressive accolades may offer diagnosis, close calls, occasional knowledge, and support, students are expected to be independent learners and complete all course modules despite contradicting medical information, spotty hospital wifi, and unrequested dietary and supplement advice from sisters-in-law, Facebook contacts, and former coworkers.

Course Locations: The following is a nonexclusive list of locations where students will have the opportunity to experience Advanced Stage Vascular Ehlers-Danlos Syndrome:

  • Emergency Rooms (both local and while out of state visiting family).
  • Doctor’s Offices: the parking lot, the entryway, the elevator, the hallway, the waiting room, the receptionist desk, the patient restroom, the examining room, the checkout desk, and the blood drawing station.
  • Grocery Stores Aisles: Important Note: Students may or may not be with a family member capable of supporting them at this learning location. Therefore, students may have to rely on staff or other shoppers to help maintain their safety and dignity.
  • Fitting Rooms
  • In planes, trains, Ubers, taxis, buses, airport shuttles, ambulances, your car, your sister’s car, and your adult child’s car.
  • Award Ceremonies and Graduations: Important Note: Advanced Stage Vascular Ehlers-Danlos Syndrome students should keep in mind that this location applies to students serving as guests and award/degree recipients. Dress and pack accordingly.
  • Dream Vacations
  • Public Restrooms
  • MFA Residency on Enders Island. Important Note: Although this location may be anxiety-provoking regarding logistics and medical care, students with Advanced Stage Vascular Ehlers-Danlos Syndrome will discover where they left their words and how to recover them bravely.
  • Coffee Bars, Diner Booths, Food Courts, and Drive-Thrus.
  • Concerts
  • Park Benches (Street Curbs are an acceptable substitution if students cannot reach the bench safely.)
  • Students’ Primary Residence: Including sleepless nights in one’s assigned hospice bed, falling in each doorway and down each set of steps, time spent in the shower chair with inconsistent water temperatures, and the queen-sized bed that now has a bedrail and a bedside table with a collection of medical equipment to aid students at night.
  • Fantastic Celebrations and Once-in-a-Lifetime Events: Important Note: Despite excitement about attending these events, students must cancel due to uncontrollable rare disease complications.

Course Times:

  • ALL
  • THE
  • TIME

Course Dates: This class runs indefinitely.

Important Note: This course is available to anyone between zero and forty-eight years old. The institution would love to offer the course to people over forty-eight, but unfortunately, mortality seems to be an obstacle. Due to the nature of Vascular Ehlers-Danlos Syndrome, each additional day beyond the forty-eighth year will provide students with opportunities to feel a mixture of gratitude and hope while also providing timely episodes of survivor’s guilt when they learn about the death of their classmates—especially the children.

Technology Requirements: Computer, internet, and email access are not required for this course, but they are highly recommended. In addition to accessing medical reports and scheduling appointments, students can use their available technology to weave connections with the outside world. Even a single thread can be strong enough to keep Advanced Stage Vascular Ehlers-Danlos Syndrome students from falling through the floor. If technology isn’t available—students are encouraged to use a pen and notebook to explore the concepts in this course.

Important Note: If not available, writing with a stick in the sand, using a jackknife to carve words onto the surface of a picnic table, or using an easel and a set of paints on canvas can be substituted as long as students remember that writing is a form of breathing and is the best way to survive advanced-stage Vascular Ehlers-Danlos Syndrome without losing their minds.

Important Note: If technology is unavailable, the body alone will suffice. Vascular Ehlers-Danlos Syndrome is best experienced through your skin and bones.

Prerequisite Course Requirements: The following is a list of courses students must have completed before being ready for Advanced Stage Vascular Ehlers-Danlos Syndrome.

  • I’m A Little More Tired than Usual
  • Maybe It’s a Virus
  • Something Feels Really Wrong
  • But My Doctor Said I’m Fine
  • A Life-Threatening Medical Event
    A Life-Threatening Medical Event 2
  • The Six-Month Wait to See a Geneticist
  • Newly Diagnosed Rare Disease

Course Description: Building on the principles learned from the above-listed prerequisite courses, Advanced Stage Vascular Ehlers-Danlos Syndrome continues the exploration of what life is like with a complex, rare genetic disorder that is estimated to affect 1:50,000 people worldwide. Coming to terms with a VEDS diagnosis is an ever changing emotional journey that touches every corner of a student’s life—even memories of the past aren’t safe as clues of the disorder reveal themselves as far back as childhood. With more questions than answers, students of advanced-stage Vascular Ehlers-Danlos Syndrome will explore what they’ve lost, what they’ve gained, and all of the feelings that float somewhere in the middle.

Student Outcomes: Upon successful completion of this course, students should be able to:

  • Describe…your life now and how it has changed. Are there even words for such a challenge? Find them and write them down—for you, for others going through it, for your children who will carry on after you’re gone and feed on your truths like they’re ambrosia from Mount Olympus.
  • Recognize…that no matter how hard you try, some loved ones will not understand you, your diagnosis, and your journey. Your sister will still ask if you caught your genetic disorder from the asbestos siding on your childhood home. Your brother will still refuse to get tested or have his children tested because he finds denial easier than ending up like you. Your mother-in-law will still tell you that you need to give yourself to Jesus if you want to be healed.
  • Compare…your symptoms to those who suffer something similar. Empathy and solidarity bring you together. They understand your tears. They feel the ache in your chest. They, too, have called on the Fates to beg for a different destiny.
  • Summarize…your medical history to those who have the guts to listen. It’s a surprisingly small number, but a few will go the distance with you. Some may be medical professionals, but definitely not all. They may be strangers at Target—you spot each other because of your matching canes. She has MS, but you both have children that need you to be as strong as tree trunks. Another you meet on Enders Island; your roommate’s smiling face instantly relaxes you. You begin to apologize for all of the medical equipment in the room when her eyes meet yours, and you recognize her soul. You were meant to cross paths, and just knowing she is a text away makes hard days bearable.
  • Explain…how you don’t have regrets. Your journey has been physical, mental, and spiritual, and you have welcomed the changes. You’ve grown more in the last ten years than all of the days you’ve lived before combined. Not only did you endure excruciating pain that your physicians described as “worse than open heart surgery,” you died on the operating room table three times and still came back. While you were in hospice care, you had a Near Death Experience that allowed you to strip away your ego and all attachments to a religion that wasn’t serving you. When your spirit guides gave you the choice to stay with them or return to your life on Earth, you chose to live for your family and embrace a new calling as a mentor to young people who need to be believed in and as a writer whose words will someday help others heal from their pain.

Course Materials:

  • Basket of Medications
  • Medical Specialist Referrals
  • Map of Surgical Scars
  • IV Lines
  • A Good Cry Behind Closed Doors
  • Wheelchair, Four Wheel Walker with Seat, Cane, Stair Lift, Wheelchair Ramp
  • Favorite Nurses
  • Collected Moments of Trauma
  • Ready Packed Hospital Bag with Nonslip Slippers
  • A Former Career that Hurt to Leave
  • Self-Help Podcasts
  • Binge Watching Netflix
  • Physical Therapy Exercises
  • Sunrises After Long Nights

Additional readings:

  • Surgical Notes
  • Ultrasound, CT Scan, and MRI Reports
  • 3 a.m. Facebook Rants
  • A Gluten-Free Menu from the Cafeteria
  • A What-Ifs List
  • Elizabeth Kubler Ross’s On Life After Death
    Letters of Forgiveness, Acceptance, and Love

Course Format: Advanced Stage Vascular Ehlers-Danlos Syndrome consists of the following ten learning modules:

  • Thinking and Talking About VEDS
  • Thinking and Talking About My New Body (with the bonus section: How to Still Dress Cute When Your Legs Don’t Work)
  • Thinking and Talking About Good Days
  • Thinking and Talking About Disability (with the bonus sections: Your Love-Hate Relationship with Your Cane and This is What Ableism Feels Like)
  • Thinking and Talking About Bucket Lists (with the bonus section: How to Communicate End-of-Life Matters Without Triggering Your Family)
  • Thinking and Not Talking About Isolation
  • Thinking and Not Talking About Friends Who Vanished (with the bonus section: It Isn’t Your Fault…No, Really, It Isn’t)
  • Thinking and Not Talking About Medical Debt (with the bonus section: Surprise! Stay-at-Home Moms Do Not Qualify For Social Security Disability)
  • Thinking and Not Talking About the Pain of Sexual Intimacy
  • Thinking and Not Talking About Death (with the bonus section: What If You Write About It Instead?)

Each module is available immediately, and students may work through them at their own pace; however, repeating one or all of the modules will be required.

Important Note: Studying Advanced Stage Vascular Ehlers-Danlos Syndrome can sometimes lead to unexpected thoughts, memories, and emotions. Mental Health Resources are encouraged but not easily attained due to lack of providers and financial barriers. Despite such obstacles, students are encouraged to find a sense of community, even if it is through the use of social media. This course is harrowing and difficult to travel alone.

Course Requirements:

  • Self-inventory: Is this a new pain, or have I had it before? Is the pain signaling a new problem?
  • Field Research: Is it time to go to the emergency room, or can I call my vascular surgeon to schedule an imaging study?
  • Quizzes: Which artery or hollow organ is in this region of my body? Is it possible that I am having a rupture or dissection?
  • Assignments: Stay calm and get your shoes on. Grab the small suitcase kept in the front closet that contains everything you’ll need in the hospital. Try to assure your children that you are probably okay and that you need to be checked to make sure everything internally is stable. Try to hold back your tears when you see the terror in their eyes because they have been in this position many times, and their hardest days were when you were in ICU fighting for your life. They’re reliving that right now, and you are, too.
  • Extra Credit: For each comorbidity, students can earn an extra 100 points. (Example: Hemiplegic Migraines, Gastroparesis, Pulmonary Embolisms, POTS, Cerebral Lacerations, Varicose Veins, and Peripheral Neuropathy.)
  • Extra Extra Credit: Students can earn an extra 200 points for each organ or tissue lost. (Examples: spleen, splenic artery, tip of pancreas, section of intestine, uterus, gallbladder, corneas, portion of the abdominal aorta, right iliac artery, right outer thigh.)
  • Extra Extra Extra Credit: For each Christmas celebrated with families, students can earn an extra 1000 points. (Example: decorating the house inside and out, singing carols in the kitchen while baking cookies, and buying an abundance of gifts and stocking stuffers for the husband and children—all while knowing that another Christmas is not guaranteed.)

Grading Scheme:

The following grading standards will be used in this class:

Although there are a large number of assignments and quizzes worth points—this course is self-graded.

Important Note: Some days, students will give themselves an A. Their doctors and hospice nurses call them a miracle. They take their medications regularly and always try to smile and help others learn to be comfortable with them despite their grim prognosis. They plan vacations. They try new supplements promising health. They dream of watching their children get married and wonder what it will be like when they become grandparents. They write novels they hope to see at their local bookstore, and they pursue college degrees that they secretly feared they no longer had the intellectual capacity to conquer. They celebrate each new gray hair and wrinkle around their eyes because it reminds them that despite their battle, they are indeed still alive and experiencing the joy of aging. They add to their gratitude lists and cite their mantras while feeling a spiritual connection to the energy all around them.

Important Note: Students will believe they’ve failed everything on other days. They don’t have the strength to continue. Constant pain is relentless, and although they know logically that the pain isn’t their fault, it leaves them demoralized. They attach their sense of self-worth to their productivity. Dishes remain in the sink. The laundry is unfolded. When they go out with their husband, strangers stare—a few even mock how students walk. Folding in on themselves like wilting flowers, students find the future uncertain, and they know that no matter what they do, their bodies will continue to create faulty collagen that will eventually cause their arteries to fail. They remember their mother and how she had died from a ruptured brain aneurysm at age 52, only one year older than where they are now. They’ll then think of their son, who has had two strokes and three artery dissections in the last year, and remember that they had passed on the genetic mutation to him.

Important Note: Although the grade may change from day to day, hour to hour, or minute to minute—students are advised to take a deep breath and hold on. The sun always rises, and with it, the dawning of new insights, meaningful connections, and quiet moments of peace. If the students have not reached a level of health necessary to pass the course with flying colors, a remedial course is available. It mainly consists of going back to the basics: close your eyes, feel the sun warm your skin, and run your fingers through the grass. When you’re ready, find your words and begin writing. Remember, you are not alone.

Read other Creative Nonfiction by Bonnie Ruane Wheeler, “My Legs,” in this issue of Wordgathering.

Back to Top of Page | Back to Creative Nonfiction | Back to Volume 18, Issue 1 – Summer 2024

About the Author

As a disabled author with a chronic illness, writing became Bonnie Ruane Wheeler’s full-time passion after graduating from hospice six years ago. Bonnie believes that their experience with disability gives their writing texture and authenticity. With an undergraduate degree in social sciences, Bonnie is currently pursuing an MFA degree from Fairfield University. When not obsessing over books and what to cook for dinner, Bonnie hangs out with their Chiweenie and volunteers to raise awareness of Bonnie’s rare medical condition, Vascular Ehlers-Danlos Syndrome.