Mom: Do you know that NASA is?
7-year-old: Yeah. They sponsored the eclipse.
– New Paltz
Erica’s cancer journey:
“What are you afraid of?”
My friend asks, “So, my question to you is about fear. If you are afraid, what you are afraid of? What comforts you? Do you stay comforted? I have known a few people – one, actually – whose religious faith allayed pretty much all his fear. I imagine that such a depth of faith would be a huge blessing, but is not something that I have. And, as I age and stuff happens in my body, I am experiencing fear that is not connected to something that can be fixed; it just is. This is why I ask you about fear. I would have liked to have asked my sister the same question, but didn’t.”
Jerry Seinfeld suggests, “According to most studies, people’s Number One fear is public speaking. Number Two is death. Death is Number Two. Does that sound right? This means to the average person, if you go to a funeral, you’re better off in the casket than doing the eulogy.” Do you relate?
Questions about my fears around death are the most popular topic I get, and I feel the heaviness and sadness in your words. But one of the biggest gifts for me in receiving a terminal diagnosis right out of the gate is having a name for my death. Sure, any of us could die at any time. Many people rationalize the seeming randomness of death – “I could get hit by a bus at any time” – dismissive of my experience in planning for my passing (and which I now grieve having said myself over the years). Before my friend, Karen Walsh Marhold, died of breast cancer, she would reply, “Sure, but my bus is running up and down my driveway.”
My Stage IV breast cancer diagnosis is a terminal disease. I will die of this, once it colonizes enough in my brain (brainssssssss…), lung or liver. Or even just a simple infection. But it is happening. I am actually dying, for real. And many of my friends who may not have a serious illness themselves seem to be grappling with similar fears around their elderly loved ones. When my friend tries talking about end-of-life wishes for her aging mother, her mother refuses to answer and will not discuss it. My friend doesn’t want to create a fight during an already-challenging time with her mom’s health, and the conversation uncomfortably, and abruptly, ends. Understandably, no one really wants to pursue it again.
Here’s the thing: We are all going to die. But dying didn’t feel real to me until my diagnosis. I’m not sure how real it feels to me even now. But here are three ways I dance with it that have strengthened and energized me, while eclipsing my fears:
1. I purchased my burial plot. (Did you know that you can actually resell your plot if you want?) As I visited various local cemeteries, I learned about local Green Natural Burial options in Rosendale and Rhinebeck. I had no idea how much of a burden this fear was for me until I signed my check. I immediately felt lighter. And now, whenever I think about my eventual passing and picture those beautiful woods, I feel like I’m being welcomed back “home” to the Earth. There’s no fear looming over me about that now. And besides, why should someone else have to do this for me? I’m leaving behind a husband and two children. Why should he have to shoulder the burden of choosing my burial plot while managing grieving kids and his own sadness after I die? I was quite moved as we walked back to the car, and he thanked me for doing it.
2. I met with my local funeral director to learn about logistics and details, whether I die at home or in the hospital. Planning and prepaying for my choices now, while I’m still upright, means another burden lifted from my family. The whole thing took around one to two hours, and it wasn’t a sad experience at all (except perhaps for the person we worked with, because we were quite thrifty with our choices).
3. I completed a MOLST form, which turns out to have nothing to do with moles or mold. MOLST stands for Medical Orders for Life-Sustaining Treatment; and, unlike all of the living wills and other paperwork I’ve done, once my doctor signed it, the MOLST is legally and medically binding in New York State. It’s a series of questions about pursuing, or not: CPR, intubation, feeding tubes et cetera.
There is no way anyone could get me to care about another boring form (although the bright neon-pink does jazz it up a little). And then I met Brenda Relyea, RN, along with Elise Lark, PhD, LCSW, at the special sauce that is the Reuner Cancer Support House in Kingston, at an end-of-life paperwork presentation. My indignant question was, “What? If I had a heart attack right here, right now, of course I would want CPR! What, are you trying to kill me even sooner?” Brenda, who has been-there-done-that and seen it all unfold at her nursing station for decades, patiently walked me through an honest scenario about my recovery. Sure, I might live through an emergency rescue. But then what? And it was the “then what” that got me. I am medically compromised. I’m not even the same “Erica” now as I was a few years ago. Full recovery is not going to happen. Yes, a healthy person could recover, but that is not my story anymore.
The MOLST empowers me to make real choices; and believe me, this all took a while to sort through. And then I did it again with my doctor, who helped me to adjust some responses that I thought I had intended, and we signed off on the form. Yes, it can always be updated.
Brenda helped me see the truth in my dying, all without influencing my personal choices. She gave me information I had no idea I didn’t know that I didn’t know, and that I very much needed. Each check box is more like a Pandora’s box, with each choice on the page playing out in ways that inexperienced lay people like myself can’t possibly predict. Sure, a feeding or breathing tube might keep me alive; but at what cost, if my body doesn’t support a full recovery?
For me, exploring and reflecting on these choices is about really owning my body and my disease. Without the MOLST, I am forcing my family’s hand to make, and live with, impossible decisions that no one else should have to take on. Why would I put that on someone else? It’s my body. Examining end-of-life questions is simply about knowledge and planning. It’s not about “giving up” or “inviting death in.” From what I’m told, faith leaders tend to be supportive of exploring these questions, too. I am learning solid information about a reality I have never encountered before.
I am so grateful for this knowledge now, but I’ll be honest, it took a while for it to really sink in, because the MOLST is about my body, while I’m still alive, with choices that I alone decide. The MOLST protects my decisions, and my family can rest more easily, knowing, “This Is What Erica Wanted.” I very, very highly recommend Brenda’s and Elise’s workshops, whether for yourself or a loved one: Herbert H. and Sofia P. Reuner Cancer Support House, 80 Mary’s Avenue, Kingston; (845) 339-2071, www.hahv.org/hahv/cancer-support-house.aspx.
How have these words landed for you? I consider these three points profound acts of love for myself and my family. I will continue to write about fear around death, and in the meantime, please keep your questions coming.
Woodstock Film Festival: Teen Shorts
A story about a tween alien on the run in a small town in upstate New York? Created by teens? Yes, please! I’m excited to see this new work in the Teen Shorts lineup at the 2017 Woodstock Film Festival (WFF): a terrific opportunity to see the artistry and creativity of some next-generation talent.
So, who are the teens behind this alien flick, Sister? You may recall Archie Lewis-Harris from Woodstock and Benny Rendell from New Paltz, both 14 years old, who screened two teen films at WFF last year, Listen and Cracked. I asked Benny about this year’s submission: “The movie stars Fae Leonard-Mann (12, High Falls) and a bunch of our friends, all from the Hudson Valley. Myself, Archie, Fae and all our friends in the movie met through New Genesis Productions, a youth Shakespeare company in West Shokan. I wrote, directed and edited the movie, and Archie composed the amazing original score. We were lucky enough to get into the Teens Panel last year, and the experience of the Festival was so inspiring, with all the amazing films and filmmaker panels, it made us want to make another film to submit again. So we did!” Please join me at the Teen Shorts films, all produced by 12-to-18-year-olds, on Friday, October 13 at 5 p.m. at the Bearsville Theater: The Candidate, Fishing, It Takes a Village, Lyric, Metamorphosis, Pigeonhood, Santa Woman, Sister and The Raven. Tickets cost $10, and the event is followed by a question-and-answer panel of the young directors.
The Bearsville Theater is located at 291 Tinker Street in Woodstock. The 18th annual Woodstock Film Festival takes place from October 11 through 15. For tickets or more information, call (845) 810-0131 or visit http://woodstockfilmfestival.org; the teen lineup is at www.woodstockfilmfestival.com/festival2017/films.php?p_id=609. To learn more about Benny, visit www.mirroruptonaturefilms.com and http://theworldaccordingtobenny.blogspot.com. And check out the offerings of New Genesis Productions at www.newgenesisproductions.org.
SATURDAY, OCTOBER 7
Quill Pen Writing Workshop at Washington’s HQ
Don’t throw away your shot to learn how to write like it’s the 1700s! This Saturday and Sunday, October 7 and 8 at 2 p.m., the Washington’s Headquarters State Historic Site presents “Your Humble Servant: A Quill Pen Writing Workshop.” Learn how to write like Washington and Hamilton did, and keep your quill to take home. Space is limited, so reserve your spot. Please note that permanent ink is used, so plan your outfits accordingly.
I highly encourage you to add on a tour of the Headquarters and museum while you are there, available Saturday from 11 a.m. to 5 p.m., and Sunday from 1 to 5 p.m. The cost for the quill workshop is $3 per person; tours cost $4 for adults, $3 for seniors and students and are free for children 12 and under.
The Washington’s Headquarters State Historic Site is located at 84 Liberty Street in Newburgh. For more information or to make your quill workshop reservation, call (845) 562-1195 or visit www.facebook.com/events/485421068490344.
World Hoop Day Jam in Beacon
Mark your calendars, because the first Saturday of October is annual World Hoop Day, and Beacon is on it! This Saturday, October 7 from 11 a.m. to 1 p.m. at the Beacon Recreation Center, Small Tribe Hoops and High Falls Hoopers for Humanity present a World Hoop Day Jam. The entire event is free, in the name of hooping for health, peace, love and joy, including free hoops and lessons for kids (bring your cameras for this one!). Here’s the schedule: 11 a.m., Welcome, Games and Lessons; 11:30 a.m., Performances; 11:45 a.m., Moment of Silence for World Peace and Unity; 12 noon, Hoop Giveaways and Raffle Drawing; and 12:30 to 1 p.m., Free Dance.
The Beacon Recreation Center is located at 23 West Center Street in Beacon. For more information, call (845) 765-8440 or visit https://worldhoopdaybeaconny.blogspot.com. For some background about World Hoop Day, visit www.worldhoopday.org.
Center for Performing Arts at Rhinebeck hosts magic show
The Saturday Morning Family Series is back with a bang at the Center for Performing Arts at Rhinebeck! Come this Saturday, October 7 at 11 a.m. and get your abracadabra on with Steven Johnson’s Magic & Variety Show! See dazzling illusions, comedy, humor and audience participation. Tickets cost $7 for children, $9 for adults and seniors.
The Center for Performing Arts at Rhinebeck is located at 661 Route 308 in Rhinebeck. For tickets or more information, call (845) 876-3080 or visit http://centerforperformingarts.org/saturday-morning-family-series/item/steve-johnson-s-magic-variety-show.
Mario the “Maker” Magician at Gardiner Library
Mario’s coming to town! No, not the videogame character; I’m talking Mario the “Maker” Magician. This Mario performer and inventor is dedicated to the Maker Movement and STEAM/STEM and creates his own props with do-it-yourself electronics and robotics – but that’s not all! His style and delivery are classic slapstick. Free, fun and fantastically educational for all ages: What a way to experience the first event on the Gardiner Library’s new outdoor stage!
Mario the “Maker” Magician takes place this Saturday, October 7 at the Gardiner Library from 2 to 3 p.m. The Gardiner Library is located at 133 Farmers’ Turnpike in Gardiner. For more information, call (845) 255-1255 or visit http://gardinerlibrary.org. To learn more about the performer, visit www.mariothemagician.com.
Open House at John Burroughs’ Slabsides
You can literally walk along a Path through History at the John Burroughs Slabsides Day Open House because of the acres of terrific trails around the renowned naturalist’s iconic cabin. At the Slabsides Open House on Saturday, October 7 from 11 a.m. to 4 p.m., take in the contrast between the modern world and the tranquility of this historic spot just minutes away. Tours take place all day; hiking is yours to explore; and at 12 noon, hear the program “How the Tanning Industry Changed Our Mountains” with Paul Misko, Woodland Valley historian and founder of the Catskill 400 Club.
This spot is always free to visit (donations are welcomed) and you can hike from dawn to dusk, but the Open Houses mean that the hand-hewn cabin (“slab-sides”) is open! Slabsides and the John Burroughs Nature Sanctuary are located at 261 Floyd Ackert Road in West Park. For more information, as well as announcements about other events like the essay contest, visit www.johnburroughsassociation.org/component/zoo/item/october-7th-slabsides-day-open-house-and-path-through-history-event.
Wallkill River Festival debuts in New Paltz
The Wallkill River Festival seems so cool and feels like it has been around for years, but it makes its debut this Saturday, October 7 from 2 to 6:30 p.m. at the New Paltz Gardens for Nutrition. The celebration begins with a blessing of the river by Turtle Clan chief Vincent Mann of the Ramapough Lunaape Nation and includes children’s activities about water conservation, such as live stream critters and fun demos about reducing river pollution with Mad Science of the Mid-Hudson; a riparian tree walk; river conservation information for citizens, farms and communities; a silent auction of river landscape art with the Wallkill River School; great food and live music, including the fabulous band, Yard Sale, at 5 p.m. Admission is free, the rain date is October 8, and you can boast that you attended the inaugural event!
The New Paltz Gardens for Nutrition are located at 51 Huguenot Street in New Paltz. For more information, to volunteer or to donate goods or services, e-mail firstname.lastname@example.org or visit www.wallkillalliance.org or www.facebook.com/wallkillriver. To be a part of the silent art auction, contact the Wallkill River School of Art at (845) 457-2787 or visit www.wallkillriverschool.com.
SUNDAY, OCTOBER 8
Forsyth Nature Center Fall Festival returns
One of my absolute favorite events in our area, it’s time for the 15th annual Forsyth Nature Center Fall Festival! This family-friendly bash takes place on Sunday, October 8 from 10 a.m. to 4 p.m. at Forsyth Park and includes fantastic live music; a huge array of children’s crafts and activities, like pumpkin-painting, hayrides and bouncy houses; a bake sale and savories; a terrific collection of raffles; and, of course, the animals, including the brand-new Reptile House! Admission is free, with free parking at Dietz Stadium and nominal fees for some of the children’s games.
Forsyth Park is located at 157 Lucas Avenue in Kingston. For more information or to volunteer for a shift to help with games, crafts or parking (free tee-shirts for volunteers!), call (845) 339-3053, e-mail email@example.com or visit www.facebook.com/forsythnaturecenter.
MONDAY, OCTOBER 9
Kids’ Day at Kevin McCurdy’s Haunted Mansion
You can help your kids get more mileage from their Halloween costumes by celebrating all month long! This Monday, October 9 from 12 noon to 3 p.m., bring your crew to Kids’ Day at Kevin McCurdy’s Haunted Mansion. This non-scary afternoon includes pumpkin-painting, magic shows, trick-or-treating with friendly monsters and more. Admission costs $11 for kids 12 and under and $13 for adults. No reservations or advanced tickets are needed for Kids’ Day. Kevin McCurdy’s Haunted Mansion is located at Bowdoin Park at 35 Sheafe Road in Wappingers Falls. For more information, call (845) 297-2288 or visit http://thehauntedmansion.com.
THURSDAY, OCTOBER 12
“Pathways to Graduation” for special needs kids at Taconic Resources in Poughkeepsie
For families with youth with special needs looking for information about diploma choices in New York State, you might want to reserve your spot now for “Pathways to Graduation.” On Thursday, October 12 from 6 to 8 p.m. at Taconic Resources for Independence, this free workshop offers families answers to your questions. For example, credits, assessments and test scores for Regents or local diplomas can be made more accessible by going through the pathway of the Career Development and Occupational Studies (CDOS) Commencement Credential. Additional scoring options and requests for review of graduation-level proficiency for students with an IEP will also be covered.
This session is free and open to the public, but registration is required by Tuesday, October 12. Taconic Resources for Independence is located at 82 Washington Street, Suite 214, in Poughkeepsie. To register or for more information, call (845) 331-0541, extension 18, e-mail firstname.lastname@example.org or visit https://goo.gl/forms/de2DpWNTldcDuFkz1.
Erica Chase-Salerno is so moved by your sharing and questions about your personal experiences with cancer. Thank you. She can be reached at email@example.com.