Carrying our Grief

I came across the story of an orca whale whose calf had died; she was photographed carrying her baby’s body across the sea, holding it with her nose as if it would miraculously, in time, come back to life. She carried that baby for seventeen days and 1,000 miles on a “tour of grief”, until finally, the mother whale let it go. It was heartbreaking to watch or think about, and yet many of us can relate to this feeling of loss and deep desperation.

You never know how strong you are, until being strong is your only choice (Bob Marley)

Losing someone that you love is hard; devastating really. I thought about this mama whale because a dear friend recently lost her child; he was a very bright and successful young man, and he fell into a dark place that he could not escape. He took his own life and I doubt that he knew, or even imagined, the ripple effect that his act of despair would have on the world around him… how could he know… he was in unspeakable pain that he hid from everyone, and he felt alone. While we all pray that he has found eternal peace, his family and friends are in mourning; their world has forever changed, and there is a hole that cannot be filled; it remains empty with the ghost of a lifetime of memories; the only thing they can hold onto. 

We all experience grief differently; some fall into a deep sadness, and want to push through the pain alone, while others prefer to tell their story… over and over…sharing memories to keep their lost person alive in some way. While there is not much that we can do or say to lighten this burden of grief, we can try to just “be” with them…be there, be gentle, be kind, and be a good listener.

Going GOLD

September is Pediatric Cancer Awareness month; we encourage everyone to “Go Gold” with the goal to shed some light, and increase awareness, for those affected by this terrible disease. Here are some facts about pediatric cancer: according to the American Childhood Cancer Organization (2019), each year there is an estimated 15,780 children aged 0-19 diagnosed with cancer in the U.S; approximately 1:285 children will be diagnosed before their 20thbirthday… that’s a pretty scary statistic. It becomes even scarier when you receive that diagnosis for your own child.

I’ve worked as a staff nurse and nurse leader in Pediatric Oncology, and although kids are surprisingly (and extraordinarily) resilient, sadly some do not survive, even with the best doctors, and most up-to-date protocols… but we never stop fighting, and we never, ever give up! And the kids and their parents…well, they become superheroes and fight like champions against this heartless, evil “villain” living inside them. 

Taylor Swift performed her song Ronan on the Stand Up For Cancer fundraiser event several years ago; she wrote the song in memory of a 4 year-old boy (Ronan) who passed away from cancer after reading a blog written by the boy’s mother, Maya Thompson. The following is a link to her performance:

References:

American Childhood Cancer Organization. (2019). About ACCO. Retrieved from https://acco.org

Swift, T. (2012). Ronan. Retrieved from https://youtu.be/tvN7BOAQn9I

Sacred Ground

When I was young, I remember that my Dad used to joke every time we passed a cemetery, “ya know, people are dyin’ to get in there” … he thought it was so funny, and we would give him a courtesy half-laugh over the predictable double entendre. I realize that cemeteries may seem like a morbid subject to some, but I find them so interesting. I’m drawn to the history and the peaceful solemnness of the permanent resting place of so many; it is sacred ground. Every grave holds a story, and I think about the people who have walked this Earth, lived a life, and are now memorialized six feet underground by a tombstone, marking the ultimate ending to their story; the inevitable great escape to the unknown. Who were they; what did they do with the time that they were given; did they have a life well-lived; how did they die; how will they be remembered? I think about these things. That “dash” between your years from birth to death represents a lifetime; “only those who loved them know what that little line is worth” (Ellis, 1996).

Gravestones are an everlasting memorial to a life lost, but they tell very little about the person… some show a long life, and tragically, some are quite short. The picture below shows actual gravestones in the cemetery where my Dad, grandparents, and other family members, rest:

These lost souls are only to be remembered as Father, Mother, and Annie; no last name; no dates; seemingly anonymous to all who come across them.

One can only guess that these modest memorials are due to the immodest cost of a burial and gravestone… or, perhaps, those who buried them cared little about a name, or some dates… they chose to remember them simply. We will never know, and perhaps that is the way it was intended.

Do you believe in ghosts? As nurses we often witness the passing of a life; ask any nurse who works in an ICU or Oncology unit whether they have seen, or felt, something unusual, like a “presence” on their unit, and I would guess that many will say that they have. When I worked in pediatric oncology, one nurse told me that after a young boy passed away, his young cousin told his mom not to worry, she saw her cousin walking away, holding his father’s hand (his father had passed away a few years prior). Some may find it hard to comprehend such stories, but I find it comforting to think that we will be reunited with loved ones when we pass.

Reference

Ellis, L. (1996) The Dash Poem. Retrieved from https://thedashpoem.com

Being brave

I reconnected with an old friend recently, and as we were catching-up on this crazy thing called life, he gently reminded me that we all have stories. While some stories are harder to tell than others, most of us are fortunate enough to have a surplus of great memories that we carry as a reminder of who we are, and where we’ve been.

Owning our story can be hard, but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky, but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” (Brené Brown)

Being brave can mean different things to each of us… it all depends on your ability to face your fears. Overcoming such an intense emotion isn’t easy; in fact, it can make us extremely uncomfortable, and is often the result of an act of love or necessity. My challenges with trying to be brave have changed as I have gotten older. As a child, being brave meant getting a “shot” from the doctor; as a teenager, it meant trying to overcome self-esteem issues; as an adult, it has been more about being honest when the truth was hard to hear; it was letting go after losing trust; it was starting over as a single mom. Being brave is stepping-up to a new challenge and trying again (and again) after failure. It is saying “yes” when every fiber of your being is feeling afraid and anxious and wants to (safely and comfortably) say “no”. Being brave is facing your fears and fighting a battle that you know you may not win, but will never give up trying.


Hope

“While there’s life, there’s hope“- Tolkien

Hope is exciting; it makes you feel that anything is possible. It is powerful and profound. The feeling of having hope can make even the tiniest spark of light seem like a sunrise in the making. Hope can make one walk a little lighter and feel a little happier. It can make you forget everything bad and painful, even if only for a short time. It is wise to be cautious with expectations, but I have found that even the slightest chance of something awesome happening, can make all the difference in the world between giving up or getting up.

Nevertheless, she persisted

This is not a political post; rather, it is quite personal to me, as I can’t help but deeply relate to the slogan, “nevertheless, she persisted“, which became popular in 2017 after Mitch McConnell condescendingly uttered it while trying to silence Senator Elizabeth Warren during the U.S. Senate vote to confirm (recently fired/resigned) Jeff Sessions as Attorney General. He did not know at the time that those words would resonate with so many women; me included… and yes, I bought the T-shirt. If you have been following my blog, you know that I was recently diagnosed with a rare spinal cord condition called Arachnoiditis. It is something that I had never heard of (even as a nurse), but it has come to be my fate after complications from my last spinal fusion in 2016. I am presently coming to terms with trying to advocate for my own healthcare needs and navigate through hours of online research to educate myself and practice patient-centered care; this time with me starring in the role of impatient “patient”.

I consider myself a (mostly) private, independent person, but I must confess that I feel so helpless… it is scary to consider how this diagnosis will affect my future, both personally and professionally. This little blog that began as a way to express myself during a time of loss, continued on with my writing from a personal perspective about my love of Nursing, has now entered into a new challenging phase of my life. Please bear with me as I stumble through this unknown territory, one day at a time.


Change

Change can be hard; we become comfortable with habit and familiarity. The longer you stay in one place, the harder it is to leave. I feel strongly that in order to grow, one must be open to, and adapt to, the challenges of change. I (especially) advocate for trying new things in one’s career, such as earning professional certifications, or going back to school to pursue a higher degree. I have written many letters of recommendation endorsing fellow nurse friends and colleagues whom I truly believed had the potential for great things in the field of nursing for other positions, promotions, or awards… even if that meant that they would be leaving my own unit/organization for bigger and better opportunities. I applaud them for being brave to try something new. As a nurse leader, it is my responsibility to raise others “up”, and I am proud to do so, just as it was done for me by my mentor, Nicole; she taught me many things about leadership and change, and led by example. Nicole also re-introduced me to the rare genius and leadership lessons from Abraham Lincoln in Lincoln on Leadership (Phillips, 1992).

“I have simply tried to do what seemed best each day, as each day came.” –Lincoln

Some of Lincoln’s greatest quotes have held the test of time and have proven to be especially true and powerful in our current political climate.

A house divided cannot stand“- Lincoln

Yes, change can be difficult, but believe in yourself and your ability to overcome obstacles and take control of your future. Confidence comes from stepping out of your comfort zone and expanding one’s experience, expertise, and perspective in other areas. In my 30-year nursing career I have worked in many sub-specialty areas in the world of Pediatrics. I was never afraid of change; it actually sustained my love of nursing. I was challenged with each and every opportunity. These different experiences have proven to be invaluable to a nursing career well-lived and loved; I wish the same for you!


Reference:

Phillips, D.T. (1992). Lincoln on leadership: executive strategies for tough times. New York: Warner Books

Smiling through the Pain

Nurses are caretakers; it is our job and natural instinct to be the provider of care, and not be at the receiving end. I’ve been on the other side of the bed (as a patient) a few times… each experience was pure torture for me; I cringe when I think about the compromising positions that I have had to endure. I am a terrible patient. I have severe trust issues; when one has worked very hard to be fiercly independent, it is an uncomfortable feeling to be vulnerable. I have been living with back pain for years; after two spinal fusions, I have (almost) gotten used to it. I megadose on Ibuprofen and Acetaminophen two- three times a day, and I try to smile through it and not complain. I carry on with my day and know that others have it far worse than I do. I joke that it’s “tough to get old”, and I am fully aware that I am at the age where it is natural to feel aches and pains; but the reality is, pain can be exhausting. It affects everything that you do, or want to do; a simple trip to the Mall to go Christmas shopping becomes less fun and festive by the minute, and you eventually rationalize that gift cards will be a win-win this year, and head for the comfort of your car… and if you are being honest with yourself, you know that this is not normal.

The MRI showed arachnoiditis. I do not know what the future will bring, but I got through today, and tomorrow I will do the same.

Broken Branches (the sequel)

I’ve had a complicated relationship with my sister most of our lives; one could describe it as a roller-coaster of highs and lows. It has come very close to a verbal agreement to terminate the biological bond several times (in anger), and always as a direct threat from her ….“We are done”; “Never speak to me again”; “You are severed from the whole family” “Consider yourself uninvited to Christmas dinner”. I believe we are there now, and like all relationships, others have been affected from the broken branch off the family tree; and for that, I am heartbroken, because no matter what issues there are between us, it is not something that calls for others to jump on the bandwagon and take an official “side”. We are both “right” in our own minds… but we own it as individuals.

Perhaps I could have waited a day or so to consider the permanent damage that was caused by disclosing some of the personal texts that I received… perhaps I could have just remained silent, and allowed the storm to eventually pass like it always does. But that’s how life is sometimes…we act, or re-act, according to how we are feeling … pain, sorrow, anger, or joy… this is life, and life is sometimes messy. I am always honest about who I am, and what I stand for, and I will continue to do so, because if nothing else, I have earned the right to have an opinion, regardless of what others may think of it.

Anger is like a strong wind; it calms down after a while, but some of the branches are already broken”– Rumi

Pain and disappointment are heavy burdens, and can come from a very deep place in one’s heart, even if you have built strong walls to protect it. It is the feeling that no matter what you do, even if you tried your best, it is not enough…it can even make you feel that “you” are not enough. (Don’t believe it for a second!) Ironically, some of the people who are supposed to be the closest to us, and most trusted, can be the ones who can cause the deepest heartache; they can be one’s harshest, most unforgiving critic; they carry expectations that can become twisted in reality or perception… and sometimes, anger can make one deaf to reason, and blind to the truth.

As I sit here today I am thinking about how words matter, and how you treat others matters. Kindness matters, and so does forgiveness (with, or without, a proper apology). It’s not ok to use your words as a means to intentionally inflict pain or shame… I know this feeling well, and I don’t want to use my own words to cause harm to others. I will continue to stand up for what I believe in, and for what is right… even if I stand alone, as an army of one.

Our Unforgettable Patients

If you want to find out what motivates nurses to do what they do every single day, ask them about some of the patients who made a difference in their lives…the stories that they tell will move you; they will make you laugh and cry, and they just may help you to understand the power of purposeful service to others. Every now and then, completely out of the blue, I am given a gentle reminder of the unexpected gifts that this amazing profession has given to me. Yesterday, while I was cleaning out my glass cabinet looking for my red Christmas wine glass that reads “He sees you when you’re drinking”, I came across my rather impressive collection of shot glasses, and I found myself thinking about a patient whom I had the privilege of caring for several years ago. Let me explain…

This young man was diagnosed with Acute Myelocytic Leukemia (AML) in his late teens; he had spent several years in and out of the hospital for chemotherapy treatments and subsequent admissions for fever/neutropenia, blood products, etc. He had been doing well; he was working hard and attending college on a full scholarship when he found out that his cancer had relapsed and he was going to need a bone marrow transplant (BMT). He stayed strong and optimistic; he had big goals and cancer wasn’t going to get in his way. He was turning 21 just before his scheduled BMT and he had plans to take a trip to Las Vegas with his friends because that was how he wanted to spend his birthday “sipping Patrón tequila and partying”. He knew that each birthday was a gift, but “21” was a milestone that he wanted to experience the most; he wanted to be like every other 21-year-old who got drunk on his birthday as a “right of passage”. This was amusing to all who knew him because this young man was the very last person you could imagine drinking tequila in Vegas! Unfortunately, due to an infection, he ended up having to spend his 21st  birthday in the hospital (in the very un-exciting state of NJ). Yes, he was disappointed, but he rolled with the punches that kept coming his way (as always).

I was working nights at the time, and at the stroke of midnight, on his 21st birthday, all available staff on duty that we could muster up for a few minutes, entered his room singing “Happy Birthday to you…”; we all had shot glasses (aka 30 ml clear plastic medicine cups) of apple juice in hand to toast the now “legal” birthday boy. I had a “real” shot glass from my one and only trip to Las Vegas and presented it to him for his “shot” of AJ, which he happily kept as a souvenir. As corny as this little make-shift party was, he loved it, and he talked about his plans for next year to (really) celebrate…I am certain that he never doubted for a minute that he would get to Vegas one day.

I would try to visit with him regularly to check-in and see how he was doing, and each time that I was there, he talked about his “Vegas” birthday party and smile. I didn’t fully comprehend until then how much this small gesture meant to him and that he would always carry that memory with him. Sadly, that would be his last birthday; he had fought so hard, and he never gave up. He taught me about courage and resilience, and accepting defeat gracefully. At his wake, his sister thanked me for taking the time to help him celebrate his last birthday. It meant the world to me that I could make a difference… showing someone just one small act of kindness could be that one thing that they need to get through a difficult time.

I cleaned out one of my glasses and drank a shot of apple juice in your memory today. Cheers my friend!

When you are a nurse, you know that everyday you will touch a life, or a life will touch yours.” – anonymous

enjoy the little things