Family – The Stories Between

Ten Sparks: An Uplifting Journaling Exercise

By Val Walker

In times when we feel lonely, lost, or isolated we tend to block out the memories of the fulfilling moments of our lives. It just seems our mind is full of flat, grey images and our hearts feel empty.

When I’d like to give myself a boost of energy and brightness, I rely on a powerful, yet simple little journaling exercise called Ten Sparks. As a rehabilitation specialist for people with disabilities and mental illness for 24 years, I’ve used this helpful exercise with the individuals I’ve served and witnessed lovely memories springing back to life when they’ve shared their journals with me. I recommend doing this exercise once a month to reflect on the moments that leave a warm glow in our heart. It’s uplifting as well as revealing and can give us signs for the right path for us to take. (Some people have remarked that this exercise is similar to keeping a gratitude journal. The major difference with Ten Sparks is that we examine the patterns or themes after we have listed ten memories.)

In the following Ten Sparks exercise, we reflect and recall ten moments of warm experiences within the past few months—bursts of energy that felt fulfilling or meaningful. That moment may have been brief or fleeting but it left a lasting impression. The more specific the recollection, the better.

Ten Sparks

Over the past few months I remember these energizing moments—I felt a spark, a glow.

At the river, I saw a little boy running and singing while playing with his dog. His joy was contagious!
I helped my friend Doreen while we spoke on the phone about her granddaughter—felt so good to comfort her.
My supervisor told me that the safety curriculum I wrote was just approved and now ready to launch—he praised me for my persistence to get that damn thing finished!
When I donated my old books to the senior center, a woman shared she was a Ken Follett reader and was so happy to have my collection.
My father told me he loved his handmade birthday card.
I gave a simple little dinner party for two friends. We had a lot of laughs talking about how none of us could cook and chat at the same time without ruining the food.
Talking to my neighbor on the patio, we paused for a moment to marvel at two butterflies that landed near us. My neighbor chuckled and said, “They seem to like us.”
I took photos of daffodils on a lush, green hillside and posted them on Facebook.
My niece was wowed by all my African violets blooming with pink and lavender blossoms.
I love the poem “Wild Geese” by Mary Oliver. I read this out loud to my pastor when I was feeling depressed, but I got chills as the words resonated so strongly.

The most common themes (patterns) that these ten sparks reveal to me are:

My love of nature and natural beauty.

My love of service to others.

My love of nurturing others.

I like feeling a sense of accomplishment.

Given these themes, a good way to build more fulfilling activities in my life could be volunteering for a nature organization such as the Audubon Society. It also might be fun, just for starters, to go to their monthly potluck dinner where I can bring my ambrosia dish.

I hope readers of the Stories Between can enjoy this journaling practice, and that it may help you as much as it has helped me. May your warm recollections give you guidance!

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress(Penguin, 2010), and a Nautilus Book Award Gold Medalist in 2011. The Art of Comforting was listed as recommended reading by the Boston Public Health Commission’s Guide for Survivors of the Marathon Bombing. Val’s articles have appeared in Whole Living Magazine, AARP Bulletin, Coping with Cancer Magazine, and other national publications. Formerly a rehabilitation counselor, she now works as an activities specialist leading groups for seniors with Alzheimer’s, and other groups with disabilities. To learn more about Val you can visit her website, Comforting in Action.

When We Can’t “Get Over It”

I just saw the movie, Manchester by the Sea, and witnessed a man named Lee Chandler trapped in grief, guilt and utter hell. Movie-goers who only want to enjoy an uplifting grief recovery story are certainly disappointed. This is a heartbreaking story of being broken by the pain of devastating loss. As depressing as this story may appear to an audience who wants Lee to “get over it,” I found a message of compassion and acceptance for those who can never completely recover.

No matter how disappointed we are in Lee for not living up to our expectations, at least not everyone abandons him, and he can hold on to a few reliable relationships. There is a hero in this movie named George, Lee’s good friend, who is a rock of strength, acceptance and maturity. George is the one who gives me hope in the midst of so much tragedy because he steps up as Lee’s true friend, an older and wiser man he can count on when he cannot even count on himself. The takeaway for me is the importance of a long-lasting, solid friendship, especially when we are called to “wear the big boy pants” when our friend is too broken to cope.

In reaching out to people in times of grief and distress, I aspire to be like George, a good friend to count on. And even though I may not meet high expectations of “being there” the way I’d like to, at least I can check in with my friend on a regular basis, and offer a few things I can realistically provide. It is important for me to be honest about what I can truly deliver, not over-promise, and yet give my friend acceptance and love, even if I can only do or say very little. Empathy, good listening, patience is all I might be able to give, or maybe assisting with an errand or preparing a meal.

What grieving people fear is that they will be abandoned because they are not pulling their own weight to be a “good” friend/parent/uncle/brother/co-worker–afraid of letting people down. They worry that they cannot reciprocate, because the mental and physical exhaustion of grieving drains their energy for returning favors, helping others, or initiating acts of kindness. To comfort people who are too incapacitated by grief, distress or illness requires our patience, maturity, and strength. This is why it is a gift to be comforting for someone in pain. We offer our best comfort by not expecting that person to “get better” or pay us back in any way. Indeed, the Oxford dictionary definition of “to comfort” means to “be strong with” from the Latin, con forte, “with strength.”

But in giving comfort, being “strong with” the one we are serving, we must be clear with ourselves about our intentions and our expectations, as we might not see “improvement” in our loved one’s response to our comforting. We must accept that no matter what we say or do, we can’t make someone feel better. Most of us never completely “get over” our grief, according to the Hospice Foundation of America. In their guidance about grieving, they tell us we can only learn to live with grief, and that grieving is not simply a task that we “get over.”

I keep thinking of George in Manchester by Sea. When I hear people complain about the depressing story and how they are disappointed in Lee, the protagonist, I do my best to remind them about George, though he’s only a “supporting” character. Often the comforters in our own lives are “supporting” characters like George, not in the spotlight, standing by in the background, holding a place for us, a rock for us, a sanctuary for us.

Thankfully, in real life, I have a few comforters like George, reliable, trustworthy friends and colleagues who have given me the gift of comforting. I will never completely get over some losses, but I have wonderful people to count on. I’ve learned from them how to be there for others, and sometimes I’ve been a comfort to my comforters in their own times of need. Comforting comes around and goes around. We take turns restoring each other, each time freely giving our gift– love without strings attached. And when I am down, I try to think of all I’ve been given without strings attached.

Cancerversary

Editor’s Note: We are always amazed at the resilience and positive approach that so many families living with cancer are able to adopt. How a potentially fatal diagnosis can be turned into a Silver Lining in their life and one they end up being grateful to have endured. We feel these stories can serve as inspiration no matter what your struggle might be.

Today is the cancerversary. Four years ago today the doctors came to Sophia’s hospital room to check in with us. We were waiting for their visit. Sophia had been brought in the night before, the cause of her illness yet to be determined. We were prepared to hear that she’d had a reaction to medication she’d been taking a few weeks earlier. Nothing prepared us for what was said next, “Why don’t you come with us to the conference room.” We were told Sophia had acute lymphoblastic leukemia and that she would begin treatment right away. It was a lot to take in and honestly the first week was a bit of a blur. What I do remember very clearly was the love and support we received – it seemed as if each day brought a new blessing.

Our friends and family went into overdrive. My sister was by my side every day with soy lattes, bistro boxes and laughs. Sophia was showered with gifts from family, friends and people we didn’t even know. Her name was added to prayer lists in Catholic, Episcopal, Methodist, Lutheran, Jewish and non-denominational churches and synagogues. The support truly helped us get through the difficult times.

They say a family trauma has the potential to break a family apart. Sophia’s cancer had the opposite effect on us. The five of us became even closer. Our time together became incredibly important. We adopted mindfulness as a way of being in the moment and cherishing each other. Even today, we try to have dinner together every single night, working around sports schedules. Some nights it’s diner at 4:30, some nights it’s 7:30. But we sit together in gratitude and share the best or funniest thing that happened to us that day.

For a while, we would categorize our lives as BC (before cancer) and AD (after diagnosis) as if we had lived two very different lifetimes. The first being a time of innocence and joy, the second being reality. Remembering an event or date we’d say, “That was about one month BC” or “That must have been about 3 months AD judging by her hair.” We don’t do much of that anymore. The whole cancer diagnosis seems to have been woven into our family timeline so tightly that there no longer seems to be a before and after – only a continuing story.

I love our story and I’m fairly certain each one of us, even Sophia, would agree- we wouldn’t change a thing. On this fourth cancerversary, we will celebrate our many blessings, grateful for each other and all those that are a part of our lives. There may also be some ice cream involved.

Jane McCaul is an Area General Manager for Chesapeake Hospitality. She manages two Baltimore-area Hackerman-Patz Houses which accommodate patients and family members of patients undergoing treatment at local hospitals. Jane lives in Baltimore with her husband John, their 3 children Christina, Jack and Sophia and their dog Ginger. After 3 1/2 years of treatment Sophia will be entering middle school in the fall – happy and healthy. She is very active participating in sports year-round (field hockey, basketball and lacrosse) but her favorite activity of all is playing in the ocean. She recently got a new surf board that she can’t wait to try!

Back From Vacation, Back To Work

Below is a reprinted blog post penned by Kylee Webster in July of 2013 on her blog, The Dancing Queen. Over the next few weeks we will be reprinting her posts to highlight the resilience and positive spirit of those facing even the most devastating of life’s challenges.

We all know that feeling that we get when we return home from a LONG, RELAXING, and fun-filled vacation and we realize that the vacation is over and the next day we have to go back to work. For most of us, this is never a good feeling. Well today I myself return to work after my own four month, fun-filled vacation. Type of work: cancer patient. Place of employment: infusion center at a hospital.

I last finished cancer treatment in the beginning of February 2013. Shortly after, I met with my medical oncologist in the beginning of March 2013 for a CT scan to check and see if the operation and treatment had worked. Well it did! On March 1, 2013 I was told that there was No Evidence of Disease in my body and my oncologist told me that he would not have to see me again for three months for a repeat CT scan. Three months?! What was I supposed to do with myself for three whole months with no treatment, no surgeries, and no doctors appointments to go too.

It took a few days for the good news to settle in. I was in shock. After all of these months, I was finally cancer free and I was going to get a vacation from cancer. After the initial shock began to wear off, I began planning. Planning trips with my family and friends. Making up for the time lost when the cancer was controlling my life.

And traveling I did!! I lived life like a gypsy and I loved every second of it. I will be honest. My cancer was always in the back of my mind. I thought about it everyday. But I only allowed it for just a short second or minute. And then I would stop myself before it consumed me. Because if I didn’t stop the thoughts, that meant the cancer was still winning and ain’t nobody got time for that!

After many weeks of living life to its fullest, my three month appointment check-up seemed to be here in the blink of an eye. On June 7, 2013, four words changed everything…”The cancer is back.” Back in my lungs. And back with a vengeance. After a few expressed profanities and a few tears shed from myself, I then looked at my oncologist and said, “Ok. What’s the plan?” Which brings me to today. I will be starting a clinical trial that will hopefully include the miracle cocktail that stabilizes, shrinks, or kills this cancer. So today I rejoin my battle against sarcoma cancer.

But let me be clear. Cancer does not define me. I am a daughter, a sister, an aunt/godmother, a granddaughter, a niece, a cousin, and a friend. These are the roles that most importantly define me. But if I am going to be honest with both myself and with all of you, I must include another role in my life…cancer survivor.

Yes I am a cancer fighter, but I am also a cancer survivor. I remember when I was first diagnosed with cancer I met a fellow cancer survivor and she told me that you are a considered a cancer survivor on the day that you are
diagnosed. So today I will fight, but I will also survive!

Kylee Webster was born on May 15, 1979. Passionate about helping others, Kylee earned both bachelor and master’s degrees in psychology from Towson University, and went on to pursue a career as a drug addiction counselor in Harford County, with focus on adolescent therapies.

Kylee was diagnosed with sarcoma in September 2011. She underwent more than 15 rounds of chemotherapy, more than 30 rounds of radiation and several major surgeries. Throughout her treatment, she amazed every person who knew her or met her. She was brave. She was courageous. She kept a smile on her face and never let her fighting spirit and attitude waver. She began documenting her journey with a blog titled “My Dance Through Cancer” and showed the world that in addition to all of her other talents, she was a fine writer too.

After battling her disease for over two years, Kylee earned her angel wings in October 2013. Kylee’s Dancing Angels was established to give something special to sarcoma patients, while keeping Kylee’s memory and spirit alive.

For more information on Kylee’s life and her Foundation and to donate to their upcoming Fundraiser: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page.

Keep Calm and Stop Worrying

Many people know that my daughter, Juliana, has been fighting cancer since 2007. She beat it then the cancer came back in March 2011 and, again, in June 2012. She has been on two kinds of maintenance chemotherapy for months. She had some pain in her chest and leg. Just recently, we noticed her right eye began to droop. We knew something was wrong.

On Monday March 17, 2014 we took her to Sinai Hospital. The following day we found out that a cancerous tumor was wrapped around two muscles in her right eye. Surgery was scheduled for the following day.

I couldn’t believe it. The cancer attacked my baby girl for the fourth time. For days, I felt like I couldn’t move. I felt like I had a five hundred pound weight holding me down. I couldn’t even do my daily radio show. I sobbed. Once Juliana was released from the hospital my wife and I came up to our bedroom to talk and I held her as she sobbed in my arms. Not again…not cancer…again?!?!

A few days later, Juliana emailed me a little poster that said, “Keep calm and Stop Worrying.” What? Keep calm and stop worrying? Certainly, Juliana doesn’t know the severity of her situation as the doctors said there is no long term cure for her. Still, this little champion was encouraging her panic-stricken father who doesn’t want to lose his little girl to this horrible disease.

What do you do when you don’t know what to do? The easy answer is to take control over your thoughts. Is that easy? No way is it easy! By March 21, 2014 I was able to pick myself up but not until I did something that has worked in the past. I started contacting thousands of people to pray for Juliana and our family. There are some struggles that you cannot afford to carry alone. This is one of them for our family.

When you leverage what you cannot do alone with the power and strength of others the load that you’re under gets a little lighter. Too often, I have found, people do not want to reach out and say, “I need help!” This is a huge mistake! I don’t know of anyone who is wired to handle all of life’s struggles. Allowing other people to help gives people a chance to make a difference in your life.

Thousands of years ago the Biblical character Moses was in charge of a great battle. He was so tired. He was losing strength very quickly. Two of his friends, Aaron and Hur, stood beside him to encourage him and to strengthen him. Everybody needs “Aarons and Hurs” in their life.

Author Mary E. DeMuth writes, “We grow when the walls press in. We grow when life steals our control. We grow in darkness.” There are some people who have a “calling” to be such encouragers. Statistics tell me that about thirty to forty percent of the public are encouragers. They are everywhere but you will never know it until you have the courage to open up your heart to people worthy of your trust.

Author Jon Walden said, “Struggle is proof that you haven’t been conquered, that you refuse to surrender, that victory is still possible, and that you’re growing.”
You don’t have to carry your struggles alone. Please pray for Juliana Carver.
“I Believe in you!” ®

John Carver was born in Baltimore Maryland and now lives in Carroll County Maryland. John married Tammy in 1988 and after nine years of infertility began adopting children from Russia and Belarus. Today, they have six children. Their youngest daughter, Juliana, has been fighting cancer since 2007. John inspires several thousand people each week using several online tools. To sign up for his weekly email, email him at johncarver@wildblue.net or check out his website, www.johnwcarver.com

Golden Honey, Silver Lining

In 2008, my garden was decimated by a small twister that took out over 30 trees. One of the trees, a stately black walnut, was home to a colony of feral bees. The trunk had been ripped in to several pieces, and the intricately constructed combs were in disarray. A beekeeping friend, Jon, attempted to rescue the colony, with the intention of hiving it somewhere on the property. His best efforts to find the queen and move her with her courtiers were thwarted: it appears she died on impact leaving the colony to dwindle and, already weakened, to die. Unable to save the colony, Jon removed big clumps of comb and our children sat around the increasingly sticky kitchen table squeezing pounds of oozing honey into a bowl. We bottled the honey and it is the best I have ever tasted.

This brush with bees inspired me to become a beekeeper myself. It was not a straightforward path: first, the night course I was to take was cancelled, another to be offered in the spring. When spring came I could not take the course as I was a little preoccupied with a very sick son, Gregory, being treated at Johns Hopkins for Stage IV Lymphoma. Eventually, however, Gregory made a recovery and returned to school.

Another spring came round, and the bee keeping course was offered again: I signed up immediately. Coincidentally, my children’s third grade teacher, Rosie, took the course too. She had been Gregory’s teacher when he became sick, and took a particular interest in his sister, Alessandra, when she joined her class a couple of years later. She has an excitement and enthusiasm that is almost childlike, certainly infectious and, on April 19th, 2015 Rosie and I successfully hived our very own colony of bees, and have tended our “girls” this year with increasing fascination and affection for these extraordinary creatures. In addition to co-parenting several thousand 6 legged delights, we have become fast friends, working together more and more smoothly as we open up the bee hive, examine each frame of comb for eggs, pollen and honey.

Rosie’s family has health challenges of its own, and we can speak to each other about our experiences in a kind of shorthand, a waggle dance of sorts. Having that implicit understanding of each others day to day difficulties, the exhaustion of continuing to function with as much grace and gratitude as can be mustered, having that inner knowledge, it takes the weight off our shoulders, if only for an hour or so. Having borne witness to how painful, frightening and fragile life can be ensures that Rosie and I are not great dwellers on the unhappy and we both tend to look for the joy in life, even on days when it is particularly elusive.

This beekeeping business helps us in that endeavor, watching these industrious, collaborative insects drawing out their beautiful comb, hexagon by hexagon, filling it with pink, yellow, even blue-ish pollen, storing honey to nourish the tribe in the depths of winter, keeping house, spic and span, each with a defined job to do, carried out efficiently, coherently, elegantly. I find myself talking to my bees when I am near their hive, or if they are working next to me in the garden foraging for nectar and pollen, their legs and abdomens liberally dusted with the good stuff. When we break open the hive and disturb their good offices, they fly up and around us and it is not fearful, but provokes a feeling of great warmth as we are enveloped in their thrumming cloud.

As Rosie and I continue our journey of care for family members with a chronic illness, on an often bumpy and rocky road with unexpected twists and turns, we have found a happy place, one we occupy together in empathetic companionship, striving to find the good, the pure, and the joy in life with our girls, our bees.

Laura Leach was born in England but currently lives in Baltimore. She is a horticulturist, a fundraiser, and freelance writer. She is married to Paul and is blessed with two children, Gregory, now 13, and Alessandra who is 10.

Circling Back: Revisiting People and Places from the Past

Some of the most fascinating stories spring from revisiting our past, rediscovering the people and places that influenced us when we were young. I am keenly interested in listening to stories from people who have recently traveled back to a special, beloved place that has reawakened and heartened their spirits. For my column, Circling Back, I’m looking forward to hearing the wondrous adventures of people who took precious time out to return to important parts of their lives, even decades later. What did you learn? Were there surprises and changes you had no idea would appear? What were the resolutions or lessons of your visit? These are the meaningful messages I would love to learn and to share with readers.

I aim to interview people about their circling back stories. Sometimes I will present their experiences as a Q&A, and other times, it might be conveyed as a story or article. One thing for sure, they are all true and heartfelt accounts of taking brave journeys, sometimes amid great uncertainty and fear, and finding how revisiting people or places in person on can heal our lives. When we travel back to see a person or a place, we step into a realm of possibilities that didn’t even exist in our first two or three decades of life. Stepping back to the landmarks of our lives that call us for closure or rediscovery, we willingly open our hearts and minds to learning and growing, a courageous and beautiful human experience. Hopefully those of us who have made the effort to travel back on a personal quest to a reunion, or to beloved place, or a resolution of a mystery, or simply an adventure in rediscovery, have all enjoyed worthwhile and valuable experiences. And even for those who embarked on a less enjoyable adventure, I hope at least, wisdom and insight were gained.

For starters, I’d like to share my circling back story about going to Maine every spring. I moved to Boston recently after 13 years of working, writing and hiking in Maine as a nature-loving, quiet, mystic of sorts. For all those years, following my passion for great blue herons, I wandered to their watery sanctuaries in marshy, mossy coves where I disappeared behind birch trees, enthralled, sitting on rocks, reflecting on their heron ways. Amazed at their patience, their stillness, their waiting, their elegance, never chasing anything, just watching until the perfect opportunity arose, I learned from herons the fine art of timing. They darted for their catch so effortlessly. I lost myself in the world of herons, egrets, ospreys, ducks, geese, and ocean waves, until the spray of a rogue wave splashed me out of my trance, calling me back to the present moment.

Every May, once the herons and ospreys have returned to Maine, I drive northwards to witness their arrival. I marvel at the long migrations these birds have endured, and how they land at exactly the same tree or rock after thousands of miles of travel. Everyone has a landing place, a nest, a community.

And after my long ocean hikes, filled with the joy of witnessing my beloved birds returning to their northern homes, I meet up with my human friends, returning to our annual gathering at a favorite spot called Gritties Pub in Freeport. We indulge in fried haddock and chips, lobster rolls, sweet potato fries, or cheese-smothered chili, along with delightful golden beer. We catch up with a year’s worth of stories of perseverance, mostly concerning money, hardship, and our righteous accomplishments. We talk late into the night, even after leaving Gritties, landing at a table in a friend’s kitchen eating re-heated leftovers, gleaning from our stories our discoveries, victories, and takeaways. It feels so good to be a regular returning visitor, all ears, all ready to learn and engage in a year’s worth of each other’s struggles, to help make sense out of our lives. Friendship just doesn’t get any better than this.

I’m so happy that I can live and work in Boston, and go to Maine seasonally for my circling back adventures. As much as I’d love to afford to go to foreign places, just the two or three hours driving north makes a world of difference in how I look at life.

Still, I dream of the day I return to Denmark to see my dear friend Claus from my first magical visit to Copenhagen at age 19, or back to Scotland to see my old friend and roommate Morna from my two years working in Edinburgh at age 21-22. The return visits with them are on my bucket list. I am so hopeful.

Don’t Let Their Beliefs Hold You Down

Like many women, my mom has been the biggest influence in shaping me to be who I am today. However, I can trace back a defining moment in my life to one particular piece of advice she gave me during a pivotal time of my childhood.

Nicole Mom and Ty — Emme Sherry with her grandson, Tyson.

I have two older brothers with one being just 18 months older so naturally I wanted to do everything that he was doing. When he would play baseball I would tag along and the boys let me play but really I was more of the person who would fetch their bat or a ball that went out of bounds. He would say, “You’re too little to do that or you’re not allowed to play on that team yet, or you’re a girl you need to play softball not baseball.”

Because I kept being told that I could not do something I was determined to not only do everything he did but set my goals to do it better. I learned how to ride a bike quicker than he did and I excelled in sports faster as well. I didn’t fully understand the little league aspect of it all and girls having to play softball. After all, up to that year boys and girls played on the same t-ball team but then the next season the boys move on and play baseball and the girls have to wait another full year until the girls’ softball league begins for them.

Fortunately, my dad didn’t want me to sit out a year so he somehow finagled a way to get me in the boy’s league when I was 8 years old. In hindsight, playing in the boy’s league made me even more determined. I remember having the grit about me to tell myself that I can beat these boys, that I was better than them, that I could compete just as well as they did.

It became clear that other parents had more of an issue with a girl on the boy’s team than my peers did. I never knew there was a gender situation until that year. I could not understand why the adults in the stands and friends on opposing teams were now mean to me and laughing at and taunting me.

I finally confided in my mom and she replied, “Nicole, some people are always going to find a way to hold you down by words or by actions. Just know that you can do anything a boy can do and sometimes you will do it better.” And in my life, that single sentence became the foundation for my future career and life path.

Because of my mom’s encouragement, I went on to study agriculture, more specifically Turfgrass management, a clearly male dominant field. Throughout my years I have come across most of the same mentalities of people as those parents in the stands or the boys in my neighborhood. I heard, “you can’t do that, that’s a job for a man or maybe you should try another line of work because you’re too pretty to do that job. Or how about you work with flowers or landscaping.”

But with my mom’s words always in my mind, I stayed the course of my passion and am now currently one of ten women with the title of head groundskeeper and one of only two women with the title in Major League Baseball. And I owe all of that to my mom.

Nicole Sherry McFadyen has been the Head Groundskeeper for the Baltimore Orioles for 10 years. She graduated from the University of Delaware with a degree in Agriculture. Before the Orioles she worked as Head Groundskeeper for the Trenton Thunder. She lives in Baltimore with her husband Dan and their son Tyson.

I Need You To Know That You Never Stop Grieving

My sister Kylee passed away on October 11, 2013, after a two year battle with a rare form of cancer called Sarcoma. I am reminded of my loss every day through simple things such as a photo or going to a place Kylee liked or when my son, Aiden, randomly asks about her, which he often does.

Kylee and Allan — Kylee Webster with her brother, Allan, in September 2013, a month before she earned her Angel Wings.

I have learned to accept that I am grieving but I won’t let it put me in a hole that I cannot get out of. I’ve learned to embrace the sadness when I can and to get a good cry out when I need it but I also make sure to build off of the loss I have experienced and the things Kylee went through during her journey to help others in whatever way I can.

One of my best friends lost his older and only brother to a heart attack in his early 40’s. It came out of nowhere. He passed just prior to my sister Kylee being diagnosed. When he passed, I told my friend, “I understand what you’re going through.” But then I lost my sister and realized I really had no idea. I think this is the tough part for people when they talk to someone who has gone through a loss.

If you haven’t been through it, there is no true way to understand. You can be there for the person but the reality is that you almost become a member of a special club. It’s a sad club that you don’t sign up for but instead just suddenly find yourself in. Nothing makes you feel better as much as talking to someone who has also gone through it. You have this automatic bond that just feels right. They understand you and you understand them.

What has become so important to me in grieving is that I try to help people understand that nothing truly matters except your health and your day to day happiness. Losing my sister has taught me that. I try to explain to my close friends that I have been given the gift of this bizarre “wisdom” about really understanding what is important. Kylee, through her passing, has taught me this.

And people admit all the time they don’t know what to do or say to someone who has lost a loved one, especially due to a disease or sudden, tragic event. Losing your only sibling at such a young, vibrant age was and is a tragedy. It’s really the simple things a person can say that matter. Simply, “I’m so sorry, I cannot imagine what you are going through nor do I understand but I am here for you if you need anything.” Reach out to them randomly and let them know you are thinking about them. So simple but it all helps so much.

Me personally, I like to talk about Kylee. Some people don’t like to talk because it is just too much to handle emotionally. It helps me when friends want to talk about Kylee and share funny stories because that helps her live on through me. I always like when people say, “Remember that time…” and we laugh while remembering. A good belly laugh really is the best medicine.

The biggest fear for a person grieving is that people will “forget.” I never want anyone to forget who and what Kylee was and still is. An example of happiness and strength. So never be afraid to “check in” with the grieving person. Everyone knows that holidays and birthdays are tough, but sometimes just the random day is hardest. Those are the days that I love when I get a call just to chat about whatever and know that people are thinking about me and Kylee.

The worst thing people can say is “she is in a better place.” Seeing Kylee struggle we knew her physical body could do no more but she still would have preferred to be “Here” no matter how difficult her days were. She took oral chemo up until the last day even when the doctors told her it was doing more harm than good. She wanted to be here and we wanted that too. People mean well but words like that sting. The same with “I can’t believe she is gone.” To all of us, her physical form may not be present but we know she is still here.

kylee and aiden — Kylee and her nephew, Aiden, just before diagnosis in 2011.

It is also hard for grieving people to hear others complain. I know it’s human nature and I certainly catch myself doing it, but it’s hard to hear someone say, “I just don’t want to go to work,” or “Ugh, I don’t feel like doing this or that.” It reminds me that Kylee would have done anything to stay here and she endured so many terrible things and still never complained. She always smiled and was in her “happy place” every day. I still draw so much from the strength and happiness she gave to others even when sick. I’ve learned to tune out the complaining and feel this is another gift Kylee has given me.

To honor Kylee, I try to teach people to just enjoy every day, in whatever small way you can. Life is precious, try not to let small things bog you down. I like nice things like everyone else, but I try to put the attention on helping people in Kylee’s name and relishing in little things like playing with my son. You can always make money but you cannot always make memories. Creating her foundation, Kylee’s Dancing Angels, helps me and my Mom and Dad keep Kylee here with us by assisting other with Sarcoma and I know it makes her proud. I truly believe she is here with me daily and at times she even shows me.

Last year, I was invited by Johns Hopkins Hospital to speak at their Night of Remembrance to other families who had lost someone to cancer. It was one of the toughest things I have ever done but when I finished talking about Kylee I felt so good inside. And people came up to me and said Kylee sounded like such a wonderful person, or she reminds them of their loved one, etc. It was wonderful.
I will always grieve my loss but I will continue to honor Kylee through my actions and remembering and celebrating her strong and happy spirit.

For more information on Kylee’s life and her Foundation: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page

Allan Webster is an Assistant’s State Attorney for Baltimore County, MD. He writes, “Kylee Brooke Webster is my only sibling. She passed away at age 34 and was 7 years younger than me. To say Kylee and I were close is the understatement of the year. We were not only brother and sister but best friends. Our family created Kylee’s Dancing Angels in her honor to help other Sarcoma fighters get to their “happy place” just as Kylee strived to do every day during her journey with Sarcoma. I am so blessed to have a sister that was loved by so many. She was one of a kind.”

But I’m Not Ready Yet…

It began with some unanswered emails. My 82-year-old uncle, Peter, was moving to a new apartment in a senior living facility. We were the only family members living on the West Coast and we kept in touch at least monthly. We had spoken of meeting for lunch that month and it was my turn to treat him at his favorite downtown restaurant, Southpark. I emailed and followed up with email, but didn’t call because I didn’t have his new number. All I could figure was he didn’t have his computer set up at his new place. I should have known that this was not like him but it really never occurred to me that he was having trouble getting settled – he was so capable, among the smartest people I’ve ever known: educated at MIT and owner of a Manhattan architectural firm.

When I finally did get in touch with him another month later, Peter didn’t want to go to Southpark. He wanted to stay close to his new apartment, to eat in the senior living facility restaurant and show me the layout of the whole building. Okay, this seemed reasonable but left me feeling a little uneasy. He seemed so tired – he needed to rest as he walked me around the facility. He was a little disheveled, too. Still, I chalked it up to the move – obviously exhausting to someone in his 80’s.

It’s amazing the allowances we will make in our mind when we don’t want to face reality or the inevitable.

Throughout January I didn’t hear from my uncle. Somewhat unusual but I knew there were so many activities at the senior living facility that he could be getting involved in. It wasn’t until early February when my father and cousin started raising alarms and asking around if anyone else noticed how much Peter was repeating himself during phone conversations. I went to visit him immediately.

peter wedding day — Peter and Patricia Paul on their wedding day, December 3, 1955.

His tiny studio apartment was in desperate need of cleaning and tidying – though this was not especially different from his other apartments. He always had lots of projects in progress and spread out as he worked on them. But he still seemed so tired as if he would not have the energy to clean if he wanted to. I was far more alarmed by the idea that he might also not be cooking for himself. If he didn’t have the energy to clean he probably didn’t have the energy to fix meals either.
He said he couldn’t get his email to work, or his TV or his garbage disposal. When I told him I would contact facility maintenance, he said he didn’t want to bother them and that they had already tried and some other confusing statements that when I look back I realize were his efforts to hide his own confusion and failing capacity. Looking back I should have seen how much the dementia was already setting in. But I just couldn’t imagine that this brilliant man couldn’t suddenly figure out how to turn on a garbage disposal. I simply took the situation as a very proud man who did not want to have to ask for or receive help.

The next time I went to visit him two weeks later, I got to his apartment and the front desk informed me he had been taken that morning to the hospital – he had fallen and he was “confused.”

I rushed to the hospital and spent four hours there as he waited for and was seen by doctors. Even though he knew who I was, it was about the only thing he knew that was correct. He couldn’t tell me how he had fallen or how he had gotten to the hospital or how long he’d been there. When the doctors examined him he told them the year was 1932. As they asked him other questions about his life and basic facts – all answers he got wrong – I felt an inner panic rising. A disbelief that this could be happening. I had to bite my tongue to not help him answer simple questions about how many children he had. The doctor had to rely on me to verify the truth of his answers about our family. I felt like such a traitor when I had to tell the doctors when he was incorrect about something – as if I was being disrespectful to my uncle.

This played out several more times over the next two months as new doctors saw Peter and each time he was admitted to the hospital. Each time I silently coached his answers in my head. Each time I cringed at every wrong answer – the year, the city we lived in, the names of his children. Each time I felt compelled to defend my uncle with each doctor, telling them how educated and accomplished he was. More than one doctor assured me that they could tell that he must have been very intelligent because he was very good at trying to hide his rapidly progressing dementia – and he probably had been hiding it for a while.

This is when I looked back and realized how many signs I should have seen but just couldn’t make that leap from brilliant man to elderly uncle in need of help as he grew more and more confused. There was only so much the doctors could explain; much was not known about the whys and how longs and especially the how much longer. But his failing mental capacities and inability to take care of himself (for how long??) definitely impacted his physical health – further complicated by a long-standing heart problem that required medication.

Peter Paul photographed in 2003 by his daughter, Suzanne Sease.

Once hospice nursing care had been established at a new room in the medical wing of the senior living facility, all that was left for me to do was visit my uncle as often as I could, to make sure he was receiving care, to bring him my familiar face, to talk to him and to bring him the love of all the family. His children had all visited but had gone back to their homes – of course because we didn’t know how long he had. His heart issue was stabilized and he was receiving excellent nursing care. I settled in to a schedule of visiting during my lunch hour at work and often on Sundays. I got to know the nurses. They also called me if anything happened – like a fall – just to report in. I didn’t realize until later how much this stage of waiting and watching kept me on edge. There was never good news, only a progressively worse status to get used to.

Those two and half months went so fast – and yet in slow motion. I barely got the chance to acknowledge to myself that this was a reality I was going to have to accept. I never got a chance to get used to the fact that we wouldn’t be meeting up for lunch ever again. (It was still my turn to treat him at Southpark.) We wouldn’t be discussing books and politics any more. (And this upcoming election would have been hours of entertaining discussions). He and I would never go to the ballet again. I never had the chance to go to the symphony with him like he had wanted.

He grew more tired and less interested and less there with each visit. On the last day I saw him, he was more alert than he had been. We had one last meaningful conversation that I will always hold precious in my memories.

I was going to visit him just a few days later on that Sunday. Saturday morning I had such a strong urge to somehow find childcare so I could visit him that day. But I didn’t. By that afternoon hospice called to tell me he had passed away suddenly. And there it was – the end.

Suddenly, slowly over many months, trying to prepare for the inevitable, totally shocked by the news. A blur of well-wishers and sympathy. And paperwork and protocol. And sitting with his body as we waited for the young men from the mortuary. The young night nurse who asked for a moment to say good-bye, genuine grief. Everyone so courteous and professional. One last visit to the senior center’s chapel (on the altar a cross, a menorah, a Buddha statue – and my favorite – a Gerbera daisy in a coffee cup). One last look out at the night-time view from the seventh floor of the senior center of our shared West Coast city. I am still missing my uncle, my friend.

To read more about Peter Paul you can visit his Stories Between tribute page here.

Amy Paul is a West Coast transplant who grew up in Baltimore but settled in Portland, Oregon, after a cross-country adventure with her now husband, Jason. She earned her Master’s Degree in English and is a marketing manager for a large commercial contractor – a career that keeps her connected to the “built environment” community to which her Uncle Peter introduced her. Amy and Jason have two sons, Gus and Rex.