If you know me, you know I'm obsessed with two things: running, and end of life care. 

What do you think of when you hear the word "Hospice"?

 When I heard that word, I used to get visions of IVs and catatonia and the faint smell of urine. It sounds awful, and sad. 

But When I met Hospice, she was nothing like that. I was planning on being an Occupational Therapist, and was working at my local Trader Joe's grocery store until classes started the following fall. One day my boss asked me to take the leftover flowers to donate them to a hospice facility that was opening up down the street. He said I could take a tour on the clock. It sounded WAY better than stocking fish in the freezer, so I did.

I was given a tour by a social worker who was joined by families whose loved ones had used the hospice for their last days. It changed my life. Because much to my surprise, hospice was ALL about life and living it well.

Wait what??? Isn’t hospice ya know, where you go to die??

Let me explain…

The families I met shared some of their love and grief for the person they lost, but they didn't only  talk about grief. They talked about joy and time together. They talked about holding a hand in the quiet darkness. About being able to make and feed someone their grandmother's famous cake just one more time. About calming an Alzheimer's patient with music from their childhood. About a family reading a favorite book all together at the bedside. About needing to say things, like "I love you, Please forgive me, I forgive you and Goodbye."

Everyone deserves to die with dignity and enjoy the best quality of life possible while they are here,  hopefully surrounded by love. Love makes this all possible, but so does money. I really need yours to help insure that all people and all families who need compassionate comforting care at the end of their lives can get it. If it is possible for you, please consider a donation of any amount to help support my run across the pond, and this worthy cause so close to my heart. 

On Mental Health and Hypocrisy

Real talk on mental health and hypocrisy 

Historically, I have hated running. I tried to pick it up several times during my dance career to lose weight and each time was torture. This time was different.

I started running in March of 2020, in Central Park. That spring I was working at a major NYC hospital in pediatric palliative care, and occasionally assisting the adult team as time went on, who were overwhelmed by patients as well. There were days I went to work at 5am and finished at 7pm. I did not work from home. Some days I would phone as many as 9 families to let them know that their loved one was dying. On my commute the subways were nearly empty and silent. 

On my way to the office, I passed multiple mobile morgues. Every day. I saw a lot of death, all of my colleagues did. Pediatric ICUs had patients in their 50s because there was no where else to put them. The adult patients were mostly alone and scared, the ones who were conscious. In an awkward, tight and sweaty mask/space suit combo, I held up iPhones and tablets so that loved ones could say goodbye, and clerics could pray. I held hands at bedside because no one from their family could be there, and nobody should die alone. I was asked by management to provide supportive counseling to my colleagues in multiple disciplines in the form of frequent support groups, 1:1 counseling and crisis intervention. I did, but I felt like a total hypocrite.

Inside I was drowning. Coming home I would lie on my floor and sob. I felt so much grief and anger interspersed with a terrible numbness. I meditated, did breath work, yoga, journaled, saw a therapist on zoom, commiserated with friends over zoom, got distance reiki on zoom, but in spite of all of that I felt broken, defeated and desperately sad. Every night I ate and drank my feelings and that only made everything worse. Death was a big part of my job so why was this so hard? I’m supposed to be good at this, a leader for colleagues who don’t see death so often on handling death with grace, generosity of spirit and compassion. But I had none for myself and didn’t know how to get it. I felt like a fraud every day and that hurt my heart. 

Out of absolute desperation, a need for something to change and a few minutes outside away from death, I decided to try running again. And this time I feel like it changed my life. I could get relief while getting healthy and be my best self again. I’d run in the dark early mornings and it brought me peace, time to process, and clarity. I love getting up early and getting in a hard run and some meditation or journaling time. Now I’m proud of myself before the workday even starts, and I walk the walk when I encourage my clients to tend to their physical selves to assist with mental health challenges. I’m so grateful for the benefits to me and undoubtably my patients and colleagues too. That is why I run, and why I’m running for HOSPICE UK. If it is possible for you, please consider a donation of any amount to support me and this worthy cause. Thank you for reading. 

What I’ve Learned from Hospice Part 1

What I’ve learned from hospice:

A “good death” is a thing, and it is possible

Talking about death can be hard and awkward at first but it doesn’t have to suck

A good death? Sounds like an oxymoron, but it isn’t. What does it mean? Well, that depends on you. It means death on your terms, as much as that is possible. Your family, your faith, your culture all play a part in what a good death looks like for you. Have you ever thought about that? We live in a culture that glorifies distraction, busyness, and toxic positivity so if you haven’t, you aren’t alone. Where can you start? 

Some people know what they don’t want (being hooked up to machines, being in a hospital) and that can be a good place to start. When you are in your last days, how do you want that to look? Where would you want to be? With whom? What things or actions bring you comfort and how do you want those present when it is your time to go? Do you want more pain control and less lucidity or vice versa? How would you feel if you had to get nutrition from a tube? Would you want one? Because those things are your choice. There is no “Have To”. It has long been a dream of mine to write a book about What to Expect When You Are Expecting A Death, because we have so many resources and so much support for learning and thinking about how we come into this world, and I think we should take the same care, support and thoughtfulness when we are on the way out. 

It can be weird and awkward to talk about death. And in many cultures it is frowned upon as there is a feeling that thinking and talking about death calls it in to you. Many people carry with them a feeling that they are “tempting fate” by bringing up this topic, but in my experience, I have not found that to be true. Instead opening a dialogue within yourself or with the people you love often brings openness, connection, opportunity and even relief. If your family won’t hear it start with you. Ask yourself what you’d want, and make sure the people who love you know what those things are. Also, this can be an ongoing conversation, and you are allowed to change your mind.

But….how to bring it up? And when? Good questions. You can bring it up in relation to the death of someone in your community, death of a character in a show you watch together, a celebrity death, in reflecting on the pandemic, in the context of a health challenge, or the anniversary of the death of a loved one. The how is up to you. There is a great resource for help in having these conversations at www.fivewishes.org. If you need some ideas specific to you, your situation or family, hit me up. 

The when, well my answer to this is always now. “But we are getting along now/celebrating a holiday/having a great day, I don’t want to ruin it.” I get that. I do. But….what if this conversation was more than hard and awkward and scary, what if it was actually an invitation to know someone you love deeply even more intimately and ensure that you give them the kind of care they want when they need it? The thing is, when it’s too late, it will be too late and you don’t ever get time back. With the death of someone you love there are often regrets, that is a normal part of grief. Not knowing if you did the right thing for them does not need to be one of them. There is so much we cannot control in death, but here is something we can do. Now. It is infinitely easier to have these conversations while everyone is happy and healthy and crowding in a kitchen making thanksgiving dinner than crowded around the bedside at the end. It’s ok that it’s hard. We can do hard things (Thanks Glennon!!)

In facilitating these conversations in hospice I have had the great privilege of seeing the courage of a son asking his dad how he saw his last days, and helped to ensure that at the end they were able to watch one last game and have a beer together (did you know some hospices have bar carts? True story!). I helped a teenager create a visualization of a peaceful place to “go” when she died and facilitated sharing her vision with her family. I watched a husband cradle his wife and feed her one last bite of her favorite pastry. I helped a spitfire of a grandmother plan a bon voyage party for herself because she wanted to hear all the nice things people were going to say about her at her funeral before she died, and say goodbye. 

One of the gifts of hospice is the opportunity to have hard conversations that can lead to unexpected and unforgettable moments of connection. Those moments are what life and love are all about. I’m running the London Marathon to help more people have those moments. Can you help? As always, thanks for reading and please share if you wish. 

On Women, Body Image and Running

On women, body image and running. Inspired by Ashley Bouder

“One run can change your day, many runs can change your life.” -Anonymous

What do you see when you look in the mirror? And what do you say to yourself about what you see?

I used to be so vicious to myself.

The first time I understood that I was overweight, I was 7 years old, and in second grade. I remembered being teased for it and heard that I was “fat” and knew that “fat” was Very Very Bad. I could barely write in cursive, still slept with a blankie, and was embarrassed by my body.

The first time I went on a diet I was 10 years old, and it was sanctioned, even suggested by my pediatrician. I lost 20 pounds. I remember trying to force myself to see frozen orange slices as a delicious decadence, trying to convince myself that I loved plain chicken breast with steamed broccoli. I walked laps around my grandparents building to distract myself from hunger so that I wouldn’t eat. The ability to “win” over my hunger gave me an intoxicating sense of control.

I remember standing in line in our tiny town’s pharmacy on main street when a friend’s mother approached me, praising my new smaller appearance and asking, “what my secret was.” This praise made me feel proud and powerful, that an adult thought I had done something well and wanted My advice! What a thrill! I concluded that I was “good” at dieting and resolved to be “the best dieter.” 

The first time I remember being catcalled I was leaving a modeling shoot. I think I was 13. I had just spent an ungodly amount of time in hair and makeup and wardrobe listening to adults discuss my body as though I weren’t there. “Well, her legs look really big at that angle.” “Can she suck it in a little more?” “No honey, no craft services until we’re done shooting, you don’t want it to show do you? *pats my stomach* After a 12 hour day I left the shoot to get the train home. Two men followed me, talking about how nice my ass was, telling me to smile and making sexual innuendos I didn’t really understand yet. It made me feel dirty and guilty. 

When I was 22 I was cornered and groped by the father of a friend of mine at a black tie event as he whispered in my ear “You are the most beautiful full-figured girl I’ve ever seen.” I think he honestly meant it as a complement. 

At 30 I was interviewed on camera by a major news organization after an audition for a big job, having made it down to the last cut. The (male) director/choreographer, On Camera, Live, patted my ass and told the viewers at home that I was really beautiful and a great dancer but that it would require “further consideration” because I was “just a little too fat here.” I am 5’9” and weighed 141 lbs at the time. Did I slap his hand away? Tell him he and his company could fuck off? Nope. I felt the impact of his words like a gut punch, then I pushed down the tears of humiliation and smiled for the camera.

For most of my life, I swallowed it. The lie that my weight determined my worth, that smaller was better and that if I shamed or starved myself just a little more I would one day be able to beat my body into skinny submission. And Then I would be happy. 

Spoiler Alert: It didn’t work. My own words, my own mind, taking cues from the media, coaches, teachers, agents, casting directors, peers, friends and family. I was fully Indoctrinated in body shaming myself. Battering away at my looks, my weight, my character. For years I lived in this muck of body-based self-loathing thinking I was right where I was supposed to be, that I deserved my own vitriol and shame.

Geneen Roth writes in her book Women, Food and God “If we are harsh, we believe we will end up being kind. If we shame ourselves, we believe we end up loving ourselves. It has never been true, not for a moment, that shame leads to love. Only love leads to love.” 

This quote has resonated with me since I first read it years ago. And I thought, well yes, Other people shouldn’t shame themselves but for me I Must keep talking to myself this way. If I do it long enough, or harsh enough, maybe one day I will finally be…. enough. But I wasn’t. 

Until I started running. Running changed the way I see and relate to myself, and the world. I never expected such a shift. Slowly, oh so slowly, I started to value my body for being strong, my legs for their power, my lungs for their ability to fill me up, my heart for pumping steadily in my chest and ears, keeping time with the rhythm of my feet. I ran until I couldn’t hear the negativity in my head anymore, and then I changed the script.

I came up with better mantras for myself. I would do gratitude runs, itemizing things including my body that I was well and truly grateful for. I saw my muscles get bigger, sinewy, and strong, and viewed them with wonder, and genuine affection. This new space of noticing my physical self with curiosity, with love, helped me to explore my inner landscape the same way. I could hear myself say something mean, recognize I did it, and choose to say something different. Something kind. And mean it. I saw my pace get faster. And I saw, for the first time, how beautiful I am. We all are. Running helps me to know and remember that. When I race, I run for me, but I also run for everyone who doesn’t yet see the beauty in themselves hoping that one day, they will too.

What do I say to someone who is grieving? 

Nothing you will say, even if the words don’t come out perfectly, will be worse than the fact that they have lost someone they love.

Often there is nothing you CAN say, but your presence might be all a grieving person needs in that moment. 

Ask permission first. Would you like some company?  If they say yes, sit down and listen.  Do you want to talk about it?  If they don’t know where to start give a gentle prompt like, “Would you like to talk about (name of person who died)? If they require further prompting, it may help to ask about a favorite memory with the deceased. If they say yes to company but no to talking, simply sitting in that space with them silently can be very powerful too. Bring Kleenex and water. Often the space and permission to be silent with a witness may prompt conversation and feelings talk. 

Don’t be afraid of silence. Sitting with someone as they cry and neither of you says a word IS doing something. It is ok if that feels awkward. Being human can be awkward sometimes.

Don’t ask How are you? Instead try How are you doing today? How are you coping? If you want to offer supportive actions, be specific about what you can do and offer choices, it takes the pressure off them to come up with stuff to tell you which can be too much work when they are in grief. So instead of saying Can I get you anything? Or Let me know if there is anything I can do….Instead Say Can I get you a snack or some water or a blanket? Would you like to go for a walk? Do you need any groceries I’m going to the store and I’m happy to swing by with whatever you need. Some people feel like it helps to make a list of stuff to do, would you like some help making one? Once they have one, explore their to do list and see if you can help to coordinate something specific like transportation for other family members to the funeral, food delivery, child care, laundry etc or connect them to someone who can.

Do acknowledge that the person is dealing with an overwhelming and painful situation. Wow, this is so much to handle.  Give them a verbal pat on the back for handling hard and often unfair situations without giving up. I really admire the way you fought for your child every day/took such great care of your mom/were with your sister every step of the way, especially with so many other things on your plate. Do NOT say “I don’t know how you do it” (they don’t know how they do it either and many people have told me they don’t want be reminded of how hard they have it, they already know) or “I could never do what you are doing (This is putting distance between their grief and you. It's about you and your fears, not about them. Don’t do that, they need you close, and the truth is that if you Had to, like your griever now has to, you’d figure it out because you have no choice.) Your (person) is so lucky to have you. You have been such an incredible advocate for your (person who died). Something just that simple, having another person acknowledge their struggle, can help people weather a terrible storm. 

2. Don't simply ignore or minimize what someone is going through. People often know when their situation or emotions make others uncomfortable and your avoidance may add to their distress. Saying nothing may be easier for you, but it's not helpful to someone who desperately needs a word or two of support. It is perfectly ok to say I have no idea what to say. Would you like me to sit with you for a minute? I’m so sorry this is happening right now.

3. Do sympathize and/or empathize. If what someone else is going through is completely out of your realm of experience, you don't have to pretend that you have been in their shoes. A sincere expression of sympathy is perfectly appropriate. I’m sorry you are going through this. If it feels genuine to you adding It's not fair and it really sucks is ok too! The most important thing is that the words come from your heart and are without pity (None of this: poor you, I don’t know how you do it I could never do it) or judgement/advice (you should have…/what you need to do is…/when my (dog/parent/grandparent died I….)

Don’t share personal experiences of similar circumstances. This takes the focus away from what the person is experiencing, expressing and processing and switches the focus to you. Let them be the focus and just hold space for them to do that.

Do NOT resort to Platitudes. While some popular sayings may have meaning and truth for you, now is not the time to tell someone “Everything happens for a reason,” or “This is God’s will,” or “At least their suffering will be over.” Be careful with God, avoid religion altogether unless the griever brings it up and then use their words/language and concept of God, not yours. If you are not sure, best to stay away from this topic.

It’s Alright to Cry. Crying is a normal and appropriate reaction to grief and loss. It may be helpful to educate the family that crying actually releases stress hormones and reduces tension and, in that way, can be a helpful and smart way to cope. * (DM for associated articles) Some psychologists believe it can reduce pain and improve sleep! Other normal reactions to grief include anger, irritability, insomnia, hypersomnia, appetite changes, somatic complaints, labile emotions, guilt, regret, helplessness, anxiety, struggling with unanswered questions, difficulty concentrating or remembering things, feelings of loneliness, looking to place blame and isolation in grief. If you found this helpful please feel free to share and consider a donation to support me and HospiceUK in the London Marathon!

More Grief School:

Did you know that
there are different types of grief?

One type of grief I  love to talk about is disenfranchised grief. This term was coined by a man named Ken Doka who codified this idea in 1989 that “Disenfranchised Grief refers to loss that is not openly acknowledged, socially mourned or publicly supported.”

Some examples are

same sex partners, death of a pet, death of an ex-partner, death of a patient, pregnancy termination for any reason, 
or the experience of a loved one in active addiction or suffering from
dementia. One classic example is that of “the mistress.” When the person dies
their legal family is socially supported in their grief, sitting in front at
the funeral and receiving condolences whereas the mistress may sneak into the
back, feel the need to hide their grief and does not get any social support as
the relationship was taboo and hidden.

One way I see
disenfranchised grief show up often is in issues of infertility or perinatal
loss which encompasses miscarriage, stillbirths and neonatal loss. We don’t
offer the same support to parents who struggle with these issues as we would to
parents who lost a child, but these losses are earth shatteringly devastating
to the people who experience them. Talking about infertility and miscarriage is
just not normalized and so very many people suffer these losses in silence and
shame. Some pregnancy loss estimates are as high as 40% of pregnancies end in
miscarriage.  If this is you or has been you, you are not alone. I see you
I hear you and your grief is real, and you are allowed to feel it.

Many women feel
this type of loss as a personal failing, a betrayal of their womanhood by their
bodies, and a shame, a dysfunction of their gender. Silently they suffer from
the relentless demons in their mind that desperately want a child and wonder if
that dream will ever come true. Beating themselves up over a cigarette they had
while backpacking in Europe or kombucha before they knew they were pregnant,
walking themselves daily through a mental self-flagellation that compounds
their grief. Right now, you know someone who is suffering with this type of loss
alone. And it isn’t just women. Where do our male partners put their grief? Are
they allowed to grieve the dream of being a father? When their partner’s lose a
child, they are often not given their own space to feel and to mourn but rather
directed to “be strong” for their wives and partners. But their grief is real
and deserves time and space too.

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Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.