Here’s What Happened in Vegas

And we are hoping what happened doesn’t just stay in Vegas, as the slogan promises.

In the typical wild and crazy style of The Caregiver’s Survival Network, we attended a three day long crowdfunding conference, miles away from the Strip. During our stay we sought to answer two big questions: What is crowfunding? How can crowdfunding help The Caregiver’s Survival Network? We were fortunate enough to find answers to those questions in addition to a wealth of information on how to run a successful company.

One of the highlights of the conference was Alix Shaer’s talk on her passionate fundraising campaign for Making Strides Against Breast Cancer. Starting with only a telephone book and a telephone, Shaer has mastered the bare bones of philanthropic crowdfunding. She is a truly inspiring, remarkable woman. A fellow bootcamper Tweeted:

Alix Shaer has been #crowdfunding for American cancer society for 20 years to tune of $500m #crowdfundingbootcamp…

— Crowdfund Investing(@woodien) October 10, 2012

Although there were some big name speakers, Peter Shankman, Founder of HARO, and Jed Cohen of Rockethub, the star of the show was our smallest member of the Caregiver Survival team, Schatzie:

We have returned to NYC and the office with a new vigor. Crowdfunding is no doubt going to be an awesome tool to help us enact our dream, but the passion and energy shared at the conference was the real invigorating force. For one, almost every person we talked to about The Caregiver’s Survival Network mentioned their parent who was under their care. They we also incredibly excited to hear that we are building an online space for caregivers to meet, interact and support each other. Although the numbers show a dire need for caregiver support, it’s always reassuring to get a response like that from a real person.

As promised, the question of crowdfunding (and what it is exactly) was answered. But rather than overwhelm you with blocks of text, we found a clearly stated infographic:

Crowd Power: What Is Crowdfunding? [INFOGRAPHIC]
via: Crowd Power: What Is Crowdfunding? [INFOGRAPHIC]


The Chronic Pain Zine: When Language Runs Dry

While on vacation in Seattle, my friends brought me to Left Bank Books to browse the unique selection of literature. Having always had the dream to start my own, the first stop for me was the zine section. I happened upon the third issue of the zine, When Language Runs Dry: A Zine for People with Chronic Pain and their Allies. I’m ashamed to say that less than a year ago, the title would not have prompted any further interest. I wouldn’t see any reason to learn more about this group. Fortunately today I have a very different perspective. I thought about the (then) upcoming Invisible Illness Week and decided to buy the zine and see if it turned out to be of use at work.To say the least, it was. It was enormously beneficial to learn more about those facing chronic pain and invisible illnesses for my own personal growth and understanding.

Chronic pain is often invisible to the public eye because it is either seen as inherently part of someone’s identity or its legitimacy is doubted. In the interview, “A Conversation About Chronic Pain,” Shelby admits that when she was younger, she believed Cassandra’s chronic pain to be an “innate aspect of [her] being.” As Shelby got older, she was able to see Cassandra’s pain in a different light. No longer was her dad’s girlfriend a “sickly” person but someone who was suffering from a “real medical condition.”

Those fortunate enough to live without chronic pain have a hard time understanding why someone who does can’t just “snap out of it.” Anna Hamilton addresses this issue in her hand-written, hand-drawn comic strip, “Invisibly Ill: Notes Toward a Feminist Theory of Invisible Illness and Disability.” She illustrates several “invisible illness fallacies” and the suggestions others posit for explaining away her pain. Some include being more positive, reducing stress, and exercising a greater will power over the pain. These proposals might help treat acute pain or psychosomatic pain, but chronic pain is a real and persisting medical condition.

One of the many difficulties with chronic pain is its visibility in social settings. It can be easy for friends and family to forget that a loved one experiences symptoms that severely limit activity. In “Saying Yes,” Meredith Butner explains the fear she feels regarding social activities: An invitation from a friend leaves her “talking [herself] out of participation” because she is “afraid that saying yes will increase [her] pain.”

Those living with an invisible illness often are confronted by insensitive or unintentionally hurtful comments. If pain or illness is not directly visible, we tend to place the other in the “healthy” category. That unconscious categorization informs our beliefs and assumptions. In my life, I try to never assume I know anyone’s full story. There are sign vehicles that may help me guess as to what an individual does and what they to do, but I don’t let those details dictate my interaction. Because I never know if the person wearing a tailored suit and pearls cut me in line because she feels entitled, or because she is trying to get home faster to lay down and relieve the chronic pain she’s experiencing.

In many ways, caregiving manifests as an invisible “illness.” The symptoms of caregiving have little visibility and can develop into chronic conditions. Migraines, depression, fatigue, and severe stress are persistent and they are real.  Although Invisible Illness Awareness Week has come to a close, I will not forget those living with chronic pain.

Labor day weekend

This past weekend my partner and I stayed in a lovely hotel on the Northfork of Long Island. The layout of the building fostered a sense of community: close-set rooms, a wraparound porch, a lawn in the center of the development. While we were not on top of our neighbors, we were certainly very close to them.

The family next door had a boy of 11 with Autism who suffered from painful gastrointestinal problems. It seemed that the boy could only vocally communicate through yelling but for the majority of the stay he was relatively quiet and looked like he was having the time of his life. On the last day, my partner, my friend and I were sitting out on the porch, when the boy started screaming. He was trying to hit himself, to hit his head on anything he could, pulling his mom’s hair… His dad got him onto the grass so the boy could have a softer surface to hit in case he wriggled free and tried to hurt himself again.

The father tried to calm his son with gentle words and a strong hug, interrupted by cursing when his son would accidentally land a blow or kick. His mother was frantically trying to whip up something to soothe the boy’s stomach. And the child was screaming in agony, perhaps unable to communicate his pain any other way.

A curtain had been involuntarily drawn back to reveal a family struggling to be constant caregivers for their son while the rest of the world looked on and judged their performance.

After the father calmed down his son, both parents came up to us and apologized for their son. Of course they had no reason to apologize– we felt nothing but compassion towards them. However, I got the sense that the couple often feels obligated to apologize to those who don’t understand the difficulties of being a caregiver for a child with special needs. In fact, I felt the guests of the motel casting disapproving looks down towards our neighbors. Or maybe I was imagining it.

I wanted to explain to them that we felt nothing but love and compassion towards their family; I wanted to apologize for any shame anyone had made them feel for their child’s unintentional disruption; I wanted to offer a hand to help; an ear to listen. I wanted to communicate so much to them but I felt myself completely blocked off from the words. Because how do you say to a family what a society refuses to say?

Your son is represented, supported, loved, and celebrated.

Life is Life

Life is an opportunity, benefit from it. Life is beauty, admire it. Life is bliss, taste it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is costly, care for it. Life is wealth, keep it. Life is love, enjoy it. Life is mystery, know it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it. -Mother Theresa

When I first heard this quote, I was struck by its sincerity. Often, when we sum up life in 140 characters or less, we compromise the sometimes ugly and sometimes beautiful purpose of existence in favor of a more romanticized notion. But Mother Teresa’s words don’t prioritize positivity. She’s not asking the listener to ignore the scary parts of life. She weighs life on a scale and finds over a dozen components of equal parts. In so many words, Mother Teresa is asking us to show up for life. Every bit of life that comes barreling towards us (tragedy, hope, joy, struggle), she asks us to face it and to match it. We won’t be pushed over by life nor will we conquer it. “Life is life.” That it is.

The Value of Health and Age

Yesterday Adrienne participated as a panelist in WEGO Health Network‘s Health Advocate chat and I had the opportunity to listen in. Three other advocates joined Adrienne to discuss the unique challenges of caregiving. I was already familiar with (and a fan of) Donna Thompson, of The Caregivers’ Living Room, because I read her blog every day. Wendy Kruse and Laurie Wallin also participated, two amazing women that I had not yet heard of. All four women were well-spoken, thoughtful, and passionate. It was really inspiring to listen to such powerful women talk about the ceaseless desire they have to help the people around them.

Donna brought up many interesting points on the way our society values the aging and sick. Caregivers and their loved ones know the burden of medical costs too well and federal programs are at lowering these costs. But why should tax payers care about the health of citizens who might never be able to repay their “debt” to society? An uncomfortable, tricky ethical dilemma when taken at face value. But for most the answer is clear– there isn’t a choice of caring or not caring. The sick and the aging are our parents, siblings, spouses, children and friends. We don’t choose whether to love them unconditionally or not. And while the aging and sick in my life might be gone, my heart is not. Herman Melville once said that “a thousand fibers connect us with our fellow men.” I care about the health of my fellow citizens, with or without a perceptible relation to them. From the extraordinary work these for women are doing for not just their own families, but others, I am sure they feel the same.

Advocacy: Measuring authenticity?

This has been a recurring theme in the last two weeks on the blog- and twitter-sphere. While researching the Top Ten Caregiver Advocates and developing measurable variables to test for successful advocacy, I have been thinking a lot about what makes an “authentic” advocate. I was prompted to revisit the subject during WeGoHealth‘s Health Advocate TweetChat.

So how do we define a caregiver advocate? To start, the OED defines an advocate as a person who publicly supports or recommends a particular cause or policy or a person who puts a case on someone else’s behalf. Caregivers are “built in” advocates for their care-recipients because they have their loved one’s health needs in mind all of the time. Caregiver self-awareness often paves the way for self-advocacy.

The Caregiver’s Survival Network is advocating that the proper resources, support and connections to be available at no cost to caregivers internationally. Yes, we’re attempting to resolve a huge problem in our health care system. But it starts with the smallest of actions. At least that’s how I see it. All of my friends who were previously unaware of the 65.7 million caregivers in the U.S. now have their ears to the ground and eyes on the lookout for the “invisible patient.” It starts with a friendly exchange: “What have you been up to?” and the following explanation of my work at The Caregiver’s Survival Network. Good old fashioned word of mouth.

Compiling the data on the Top Ten Online Caregiver Advocates gave me such incredible insight into the tangible results of online advocacy. It stimulates word-of-mouth to move faster and further. While there may be “legal and professional” definitions of advocacy, I believe anyone can be an advocate. Any Tweeter, Facebook poster, Pinner, Blogger, talker, writer, speaker… If we had to limit our definition of advocate to someone with a degree or certification, think of all of the causes we would smother before they caught fire, all of the advocates we would silence before they even found their voice. I choose to measure advocate “authenticity” by the passion in their voice and the dedication in their hearts.

Top Ten Online Caregiver Advocates

Upon my introduction to the world of caregiving, I felt (and still feel) a pressing need to thoroughly research the history, statistical movements, and demographics of caregivers. As I’ve noted before, the Internet has the power to connect an individual user to millions of caregivers but it often feels like following a trail of poorly laid breadcrumbs. There are certain hubs of activity but mostly narrow pathways to the many blogs and articles written for/by caregivers. For someone as new and inexperienced as I was to caregiving, I turned to the thought-leaders in the community to connect the dots and make sense of this entire world previously unknown to me. These were the names I saw consistently popping up in Google searches, on my Twitter feed, on Facebook. After further investigating these leader’s stories and their caregiver followings, they became some of my personal heroes. I appreciate the time they have spent online, devoted to informing and supporting caregivers and advocating on their behalf.

See the list here:

The Hail-Mary Post

Sometimes I forget what 65.7 million looks like. I’ve been combing the web for months looking for caregiver’s stories– blogs, forums, Twitter, Facebook, Pinterest. I’ve turned up many but few command a web-presence. For a couple minutes I can delude myself into thinking I’ve seen them all. In college, resources were finite: to my frustration, there were only so many papers on how speaking in one’s mother tongue affects a colonized people’s identity. I became used to finding all of the information I need from a couple of well-worded Google searches. But 65.7 million is practically infinity when you’re reading caregivers’ stories. If I were to read about one caregiver a day, it would take me 180,000 years. Longer, even, because the caregiving population is growing rapidly. And that would only be for caregivers in the United States. Caregivers all over the world should have their story told.

Of course, the problem of connecting to all 65.7 million caregivers depends on how “connected” each caregiver is to the online community. Does he or she regularly blog or update social media sites? Does he or she know someone who does? As I expand our presence in virtual social networks, I am continually surprised by the number of caregivers I find on every platform. If only half of all U.S. caregivers were “plugged in,” that would still be an enormous presence. But where are they?

Heavily sprinkled across every social media platform available. Twitter gives a megaphone to caregiver advocates. Facebook gives caregivers a timeline. Pinterest gives them boards to post their inspirations and aspirations. Recently, I discovered that caregivers are Tumbling too.

The prominent caregivers on Tumblr are young, usually caring for a parent or grandparent. I think the reason young caregivers have found their niche on Tumblr is that only a very young brain could process all of the text, .gifs, photos, videos, and quotes posted on the site! However. I came across many caregivers with clear posts about their guilt, confusion, and anger, using their Tumblr as a Hail-Mary. Many professional caregivers have also found a space on Tumblr to talk about the stress caused by their job. Unfortunately, it’s common to think that professional caregivers don’t need emotional support because their care is paid. But professional caregivers can easily develop strong, familial feelings for their caree– the emotional and physical toll can be great. It’s wonderful to see that professional caregivers have found a space to voice their stories. Adrienne has always stressed that The Caregiver’s Survival Network be foranyone who needs it. This includes paid-caregivers. All caregivers, regardless of context, should have a place to connect, to learn, and to heal.

Introducing The Caregiver’s Survival Network’s Tumblr.

Breathing Fully and Freely

It’s funny– as I made our latest CareCard (see below), I found myself taking deeper breaths, closing my eyes and feeling my lungs swell. Maybe it’s the reminder that blue skies and white clouds exist (how often I forget to look up), maybe it’s the fullness of the font, or perhaps it’s just that reading a simple direction in how to breathe actually directs my breathing.

Forgetting to breathe is easier than we think. As humans, our first reaction to pain is to hold our breath. When we are humiliated, angry, stressed, we keep the breath in. When life becomes dizzying and overwhelming, take a deep, full breath. Let it out freely. Feel the oxygen rushing to your head, clearing away all of the negative thoughts. Take another. Take another. As many as you need until your head feels a little clearer and your muscles have eased some.

Tell me, is there anything better than breathing in salty beach air on a summer evening? Or the first, sweet inhalation of spring? Or gulping down winter’s crisp breath? Our bodies are waiting to relive of those memorable breaths, all we have to do is pause, inhale, and experience ourselves letting go.

Use the affirmation below to remind yourself to breathe in those stressful moments.


It shames me a little to admit this, but I first read this quote on the tag of Yogi tea bag. You know those moments when a coincidence is eerily on point? Well, this was one of those times. Earlier that day I had begun to pack up my things to move to my new apartment. I figured it would take–what, like an hour? O-ho no. Two hours later, my books alone took up all of the boxes I had set aside for the job. Before I started packing, I had this crazy perception of my stuff– that it wasn’t a lot. In my mind I could fit it into a suitcase and a couple bins. But the more I packed, the more stuff there seemed to be. And how to pack it all neatly? And make it all fit? That would require more patience and time than I was willing to devote.

I sat down on a suitcase full of sweaters (just sweaters), feeling completely overwhelmed. As I looked around at my stuff, I felt resentful that I was emotionally attached to all of it. The knitted scarf my friend made me six years ago, the diaries from when I was a kid, the lone earring I’ve been meaning to turn into a necklace, piles of cards given to me throughout the years. I felt the physical weight of my stuff pressing on my chest. Getting rid of it would bring me to tears but holding on to it would surely make me collapse. So I did what any sane person would do when faced with a tough decision– I walked away from it. Not to abandon it, but to remind myself of what a “light” life feels like. I didn’t even bring my bag, no cellphone, wallet, book, etc. I walked around the block and soaked in the lightness I felt without the burden of physical (and emotional) baggage.

When I returned I was ready to divide and conquer. Looking around at my room I figured maybe half of it would fit into my new apartment, some could stay with my parents and the rest would have to go. So I got to it.

When I was able to finally unwind with a cup of tea, I read the Yogi’s quote. I come from a mother who packs for an army when traveling overnight. I grew up with a room full of memories and memorabilia. I live in a city packed with restaurants, cultures, and people. Let’s just say I’m not inclined to living light. Save for when I backpacked across Mali with two friends, I lived light. I traveled light. I had to. But how to continue that light living in an environment that is overstimulating and overbearing?

In moments of desperation I want to throw away everything and start new. But I know myself– in a couple of decades I will sorely miss the journals I have kept since I could write. I will miss those cards that said such special things. I will miss the sweater my grandma gave my mother who gave it to me. These are physical representations of my past and they are harder to let go than the memories that sometimes just slip away. My relationships are my emotional grounding. And I would never dream of cutting myself free of them to chase “lightness.” No. I don’t believe living light requires us to purge our lives of anything unnecessary to survival.

“Travel light, live light, spread the light, be the light.” If we read this quote backwards, we’ll find where to begin. The “lightness” starts in your heart. From there, it will spread throughout your life.


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