Exploring Grief – The Stories Between

Turning to Others After Loss

By Val Walker

It can be difficult to break out of isolation after the loss of someone dear to us. It takes an enormous amount of courage, hope and energy to reach out and find the support we need. Typical self-help tips and quick fixes for getting “out there” and finding “your people” might not offer the best solutions for a grieving person. Indeed, we might not even want solutions at all—maybe we just want a little comfort.

As a former rehabilitation counselor for 18 years, supporting my clients as they braved through major life losses, I often reminded them to be patient with themselves. It takes time to “get back out there” and get to know people we can trust and count on. In vulnerable stages of grieving, feeling anxious, tentative and alone, it’s easy to give up quickly on new connections when they don’t seem genuine enough, or warm enough. Instead, staying home feels so much better with Netflix, a cat in our lap, and a nice warm drink. Eventually, however, bored with the emptiness of our isolation, we might muster up the wherewithal to get out again. Hopefully, each time we try a new meet-up or social event, it gets easier to make new friends.

Fortunately, even one solid relationship can make all the difference in making our lives feel normal again, and restoring our confidence. I’ve heard inspiring success stories of rebuilding support after loss, and learned that certain attributes in people tended to help grieving people more than others.

I’d like to offer practical wisdom from grief support group participants who shared reassuring stories of connections that helped them live with loss. Above all, they insisted, the key to choosing a supportive group or person is to feel safe, accepted and “heard.” It is a healing experience to be able to sit with a person or a group who listens, acknowledges and validates our experience. We each have a unique and personal way of grieving, and it is essential that no one pushes us to “get over it,” or go through our grief in any “right” way. According to the Hospice Foundation of America, we might never completely recover from a loss, but we can learn to live with loss in our own way. We know we are in the presence of a truly comforting person when we feel encouraged to be ourselves in times of uncertainty, doubt and transition.

Essential qualities of people who are comforting for others:

Attentive listeners: We feel heard.

Empathic: We sense they feel what we feel. They “get it” on a deeper level.

Patient: We don’t feel rushed to “get over” our loss.

Nonjudgmental, open-minded: We feel free to express what is true for us. They don’t tell us what to think or do.

Reliable: They keep their commitments (and don’t overpromise): We can count on them.

Warm, kind, compassionate: They smile and welcome us. They put us at ease, or show affection.

Genuine: They mean what they say, even when they say, “I don’t know what to say.”

Hopefully, we might turn to a friend or family member who has a few of these comforting qualities. But if we need to find more support, there are ways to meet comforting people in our communities.

Here are two of the most effective approaches for grieving people to rebuild social support:

Grief Support Groups and Individual Grief Counseling

Hospices, hospitals, behavioral health agencies, and other centers for loss offer support groups and counseling facilitated by a licensed social worker or trained grief counselor. (At the very least, these organizations can give referrals to support groups and counselors.) In a natural, unpressured way, grieving people in a support group can meet others who have much in common, and who understand and value their experience of loss. With a support group or an individual counselor, we feel accepted, and reassured that we are not alone. Once we break through our sense of isolation, it’s easier to take the next, brave steps to reaching out to others in our community for friendship and fellowship.

I’d like to add that for me, personally, even though I was a counselor, after my loss, I needed grief support groups to restore my confidence and courage to get out and socialize again. On top of that, as an introvert, I was highly sensitive to any group of people. As superficial and cold as the world could feel, it was just too easy to give up and give in to isolation unless I had a trusted support group helping me keep the faith. Facebook, social media, and typical social meet-ups were not enough for finding solid, reliable people to count on. Being well-connected didn’t mean being well-supported. Even though I had a hundred friends on Facebook, and a hundred more colleagues, building relationships I could count on was the most difficult task I’ve had to master in life. Yet to be honest, it’s also been the most rewarding.

Volunteering

We can meet like-minded and comforting people in organizations where people share their compassion, wisdom and generosity. We can join a group with a sense of purpose and fellowship, even for just a few hours a month. There are hundreds of causes, missions and projects that need us. If we are still grieving, it’s important to choose a volunteer opportunity that best reflects what is truly life-affirming for us as a person. Grieving people have shared with me that what is rewarding as a volunteer is what makes meaning in their lives. “Meaning-making” activities are key. In short, whatever we do as a volunteer, it’s best when it feels authentic, purposeful and right for us. It could involve music, nature, animals, history, serving others, deeper learning, or creating community. In volunteer settings where we are “in our element,” we can meet people who welcome and engage us. And eventually, over the weeks and months, new friendships can develop.

Other Popular Ways Grieving People Rebuild Support (in face-to-face interaction):

Religious and Spiritual Activities, Retreats: Ideally, there is comfort in gathering together to share a sacred experience.

Sports: Yes, bonding surely happens as part of a team or a group of fans!

Learning: Classes, Study Groups, Workshops, Continuing Education, Community Education. When we’re passionately interested in a topic, we’re breaking through our isolation and following our calling to new people, places and things.

Animal Companions and Therapy Animals: Shy or anxious people can connect better with humans when their animal companions are with them.

Exploring, Traveling, and Hosting other Travelers: A sense of wonder and adventure has a way of connecting us with others.

Social Activism, Advocacy: There is plenty of injustice, stigma and inequality we can face when we team up with fellow activists and advocates. We don’t feel alone when we come together for a cause.

Expression through the Arts or Arts Therapies: Joining in a song or dance, we lose ourselves in the magic of the moment. Before we know it, we’re feeling better.

The list above is not complete, but many grieving people I’ve known have transformed their lives by taking part in any one of these social experiences. Hopefully, we find the right, comforting kinds of people as we step into our new endeavors with an open mind and a willingness to explore and learn.

The most comforting people I’ve ever met have lived through great losses in their own lives. Those who have learned to live with loss are the ones we are fortunate to meet in our quest to rebuild our support networks. Whether we are singing in a choir, or volunteering at a food pantry, or watching a ball game with neighbors, comforting people are often there to help us break through our fear and awkwardness. They come from all cultures, backgrounds and ages. We might be surprised. They will welcome us with a radiant smile, and recognize us because they have been through grief and loneliness themselves.

Hopefully, we won’t shy away for too long.

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.

10 Myths about Comforting a Grieving Person

By Val Walker

Myth1: You shouldn’t try to offer comfort unless you know what to say.

We don’t have to know the right thing to say. Sometimes there is really nothing that can be said. We might at least say we are sorry to hear about their loss, and acknowledge their loss. We still offer to show up, even if we don’t know what to say, because there are many, many ways to connect and communicate, depending on what that person desires – listening to their favorite songs, bringing catnip for their cat, baking a meatloaf, dumping their trash, playing a game of cards, doing their nails, watching Netflix together. We offer our time and our presence, and see what happens. Even Tweeting our comfort in little ways helps, by saying, “I’m thinking about you now, and I hope you are getting through today.”

Myth 2: Offer your assistance by saying, “Call me if you need me.”

It’s always better to be proactive by letting them know what we can do for them. Reach out with something simple and concrete. “I can call you Monday night,” is better than saying, “Call me if you need me.” People in distress suffer more when they are “left in the dark” about when contact will be made. No one wants to appear needy by having to call out for help.

Myth 3: To be effective at comforting we need to have lots of time to provide enough comfort.

We can be comforting in a matter of minutes, even in seconds. Little acts of caring can make a big difference for someone in distress.

Myth 4: We should try to cheer the person up when they are down, and encourage them to be positive. It’s our job to make the person feel better.

Allow the person to honestly feel what they are feeling. It is important to acknowledge what the person is telling you and acknowledge their loss. Insisting on showing the person “the bright side” of their experience can make the person feel invalidated, unheard, or unaccepted.

Myth 5: People typically recover from the death of a loved one in a year or two. We should help the person move on with their lives.

Grieving is a unique process for every individual, and the grief might never end completely. The Hospice Foundation of America says it best: “Grief never ends. Over time we learn to live with loss.”

Myth 6: We should be able to see results after we have helped a grieving person—we aim to make a difference in their lives. If not, we haven’t really helped.

Offering comfort is much more like offering a gift with no strings attached. Our comfort is given freely. The grieving person is allowed to respond in their own way, and in their own time.^:

Myth 7: Once we have reached out once or twice with our condolence, that should be enough. We don’t want to bombard the person while they are going through such a hard time.

It is wise to gently check in with the grieving person, every couple of weeks or once a month. It can be a brief check-in, without any pressure for the person to respond. Just letting the person know you are thinking about them, and asking how they are doing is a way of showing you are there for the long haul. Also, you can check in by inviting the person to join you for a phone call, or for lunch, or a social gathering. The grieving person will not feel forgotten, even if they turn down an opportunity to join in an activity.

Myth 8: We are not doing a good job of comforting unless we offer a hug, and show our affection, our warmth and love.

We don’t have to be “touchy feely” to be effective at comforting. Just listening quietly, or showing that we care with a kind gift, or offering to do errands such as walking their dog, or sending a thoughtful card —all of these gestures of comforting are genuinely loving things we can do.

Myth 9: We should help the grieving person put things in perspective, by comparing their situation to what could be worse.

Comparing our experiences (“It could be worse…”) with each other is never helpful. No one has the last word on what is most painful for anyone else. It is best to just listen with an open mind and an open heart. Empathic listening and acceptance is a gift for a person devastated by a loss.

Myth 10: Comforting skills can’t really be taught. People either have that gift or not.

Most of us learn to comfort others and ourselves throughout our entire lives. Opportunities for comforting arise every day. It is an art that we can always practice–and the more practice, the more wisdom we gain.

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!

What I Learned from Alice: Myths and Misconceptions about the Five Stages of Grieving

Over the past 30 years, the work of Elizabeth Kubler Ross and the Five Stages of Grief have been widely misunderstood and misapplied. Her five stages outlined as denial, anger, bargaining, depression and acceptance are often interpreted as benchmarks we need to “work through,” hurdles to clear, or goals to accomplish. Sadly this goal-oriented approach has caused many people to believe they can measure their “progress” through grief while undergoing the painful ups and downs of raw emotions. But too often, these expectations lead to guilt and shame if that “progress” fails us somehow.

As if grief itself wasn’t difficult enough, many people have actually judged themselves for not going through their grief the “right” way. And worse, many people have mistakenly believed that if they successfully” worked through” all five stages, then they should have “gotten over” their grief. But the truth is, we never completely “get over” grief, even though we do somehow learn to live with loss.

In short, grief is a very unique and individual experience. Some of us might stay in denial for 10 years as we plow through one crisis after another, and find out later that we are going through the “old” anger or depression from a loss decades ago. And this is okay—the way it has worked best for our life’s circumstances. Should we judge ourselves for not being able to grieve the “right” way just because we aren’t ready to face the powerful emotions of this process?

In my work as a rehabilitation counselor for 20 years, I particularly remember one person, Alice, in 1994 who taught me a profound lesson about grief and death. Oddly enough, I learned the most about grief from a 65 year old dying woman who had no time left for grieving. Indeed, Alice was given two months to live after a huge fast-growing tumor was found right next to her heart. I was her counselor at a hospital, and it was my job to somehow (according to the request of her physicians) help her with her “anticipatory grief.” Her daughter was already grieving, and welcomed my offers of comfort and acknowledgement of her mother’s horrific situation. But Alice’s daughter warned me, “She’s not facing it, she is totally refusing to face it.”

When I stepped into Alice’s room to say hello and introduce my services as a counselor, Alice snapped, “Don’t you dare talk to me about (she hissed sarcastically) my feelings—I just want to have a few good weeks—so don’t spoil it. In fact, you can just forget about me unless you can make me laugh or keep me entertained! That’s all I want.”

I was blown away, but I wore my professional smile and empathically nodded. Of course, inside my calculating brain I was “diagnosing” her stage of grief as denial bordering on anger. Yes, sure, I could just humor her and play the game, so she could get to trust me, but hopefully, at some point, I could help her “grief process.”

Over the next few days, with the help of a chaplain who played a guitar and sang folk songs, I joined in the singing and clapping and observed Alice fully engaged and “entertained.” Her daughter hovered around the bed, pretending to be happy with the chaplain, looking back at me for signs of “Now it’s time for you to talk to my mother…” But I never did that “talk” with her. Instead, we laughed, sang, got goofy, watched stupid reality shows, swooned over David Duchovny on the X-Files, ate ice cream, painted toe nails, read Peanuts comics. Alice died just one hour after her last X-Files episode.

I was shocked, but I marveled at Alice’s amazing sense of what she needed before she died. I believe Alice knew, deep down in her bones, and in her soul, that her time left on earth was utterly too short to do any “grieving.” I was amazed at Alice’s strength and certainty that she must “entertain” herself right up to her last breath. I am so glad I listened to her, and followed her lead to do the “right” thing by her standards! Fortunately, her daughter was also heartened that her mother was comfortable, and had a voice in her care for her final weeks. And to be honest, to this day, when I am with any other person facing grief or destruction, devastation, or death, I let them show me how to join them in their own way of coping.

We all have a unique, personal wisdom that guides us, often coming from our body sense, our gut, our instincts. The five stages of grief might not apply to someone with just a few weeks left to live. The five stages of grief might not apply to a 10 year old who lost his father after losing his friend a month before that. Or to a 30 year old woman raising two kids on her own with three jobs. We all go through the stages unevenly, and not even in the “right” order. It might be denial, then depression, then anger and not reaching acceptance for three decades. But all the while, every day we are handling each curve ball of unpredictable life events coming our way, in our own way.

Thank you, Alice, for teaching me to step into the present moment, out of my expectations of your grieving process, to the realities of your grief without time to grieve. Yes, Alice, you “worked through” your denial stage very brilliantly. Denial is a beautiful thing, I’ve discovered, and if I ever have to leave my life as quickly as you did, I hope I can enjoy it as much.

February: The Month I Love to Hate.

February sits smack dab in the middle of winter, when the skies are grey, the trees are bare and it’s cold outside. You go to work when it’s dark and come home when it’s dark. No neighbors are outside to chat with, the kids are bored inside and although the days are short, they seem to drag on and on….

Every year for the past 15 years, I brace myself for the arrival of February. Chelsea, my beloved daughter, passed away on February 10, 2001. It was only 15 days before her 10th birthday. So every year, in February, I celebrate her life, and mark her death. You would think that after 15 years it would get easier. Some years have been easier than others, but when you lose a child, the heartbreak never truly goes away. Yes, you learn to live with it. You learn to smile and laugh again. There is even joy to be found, but when thoughts drift to her, it’s just…hard. Would it be different had she died in the spring? I doubt it, but mid-winter only exacerbates the emotion that is as grey as the sky.

What should I do on February 10th? Some years I’ve taken off work, stayed under the covers and wished it would all go away. Pity parties don’t help, but sometimes the tears just fall regardless of how hard you try to not let them. Other years, I try to celebrate her life, remembering the good times and how sweet she was. I can look at pictures and watch home movies, but still the tears…. Sometimes we’ve gone on an adventure she would have enjoyed. Another year I was on a business trip and was so busy that I didn’t remember until I wrote the date. I almost panicked. It made me feel like a terrible mother. Then my own mother called to check on me and I broke down into a million pieces.

I used to struggle with terrible depression in the winter. One doctor diagnosed me with SAD: Season Affective Disorder. He suggested I try light therapy. I diagnosed myself with SAD, but I was just that, ‘sad.’

Then, there’s February 25th, Chelsea’s birthday. This year she would be turning 25. That’s hard to imagine… This day is a little easier. We always get a cake, sing happy birthday, then write messages on balloons and let them go. I love to see what Ethan and Charlotte, (my son and daughter who came after Chelsea passed away) say and write to her. They never knew her, but she is every bit a sister to them as Ashley, my oldest daughter. They talk about her like they did know her. Hopefully, because we all have talked about her so much over the years that they feel like they do. I love when they ask questions about her.

Now, when the holidays are over, and we round the corner into the new year, I see it in the distance. I know it’s coming and I try not to fear or dread it. It’s a time to remember Chelsea and celebrate the life she lived. I don’t make any definite plans as to what I’ll do or how I’ll feel, because every year is different. Awareness and acceptance of my feelings is what has made the difference. It’s okay to feel sadness and even pain, because even though it hurts, it is healing. The most important thing is to let yourself feel – all of it – the good, the bad and the ugly. Grief is a process and there is no time limit. It really never actually ends.

The best part is that after February is over, spring arrives. A renewal and rebirth of life. The trees bloom and the sun comes out and life is new all over again. I take a deep breath and know it’s going to be okay. My joy and hope is in knowing that I’ll see her again one day. So, until then, I will remember her with a smile, (and most likely a tear) and live my life to the fullest, experiencing as much joy as I can along the way.

Sally Hanshew is married and has four children. She enjoys baking, camping, reading and most of all spending time with her family.

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.