Grieving 2.0

We have survived one year without Isabel, a sad, traumatic, bittersweet yet uplifting year. I want to try and focus on the uplifting.

It feels like mental health issues - the seriousness of untreated depression and overcoming stigma, in particular - are moving towards the forefront of public conversation.

The Isabel Whitcomb Stay Strong Fund was established at UNC Hospital, thanks to the generosity of so many people.

Our beautiful cousin, Annie Phillips, honored Isabel by running a marathon and raising a lot of money for the Fund.

I recently gave my first public talk on the role of the Fund in emphasizing family-based therapy to treat eating disorders in the state of North Carolina. While I was somewhat terrified, I found it incredibly energizing, and look forward to doing it again.

Family, friends and strangers have reached out to us, offering support, shoulders to cry on and much appreciated kindness, as well as asking for advice and sharing personal experiences with mental illness.

I got my first (and only) tattoo that reminds me everyday to Stay Strong.

On October 2nd, the anniversary of Isabel’s death, people sent us photos of her that I’d never seen before. Of course I cried but I also smiled a lot. Genevieve found two short video clips of Isabel laughing her trademark laugh.

I’ve read through several books about suicide and how those of us left behind -the survivors - struggle to learn how to cope. One of them suggested that the second year was actually worse than the first. When I read that, it felt like a kick in the stomach. There is absolutely no way I want to feel worse.

I refuse to feel that way. While Isabel couldn’t see a way forward for herself, I can continue to carry on her mission of addressing the shortcomings in the treatment of anorexia and overcoming the stigma of mental illness. Her goal in life was to become a motivational speaker. I am not even going to try to achieve that but I can at least continue to be her voice and speak out.

On the first anniversary of Isabel’s death, a friend asked if Isabel had sent me a meaningful song. A lot of songs held meaning for her but I didn’t feel one that day. A song did show up though, not long after.

I was at a conference in Washington DC last week which was dedicated to the memory of a special woman. The person speaking about her mentioned a line from a song by Peter Yarrow called Sweet Survivor. I didn’t know this song before but I do now.

Carry on my sweet survivor, carry on my lonely friend
Don't give up on the dream, and don't you let it end.
Carry on my sweet survivor,
Though you know that something's gone
For everything that matters carry on.

That last line - for everything that matters, carry on - is going to be how I move into year two of the grieving process.

Memories, by Genevieve Whitcomb

Last night I had a dream about Isabel. It was one of those dreams you don't even remember when you first wake up but then a few hours later, someone says something and suddenly the whole dream comes back to you. I was sitting in my music class this morning and our class was playing djembes (picture what you think a classic bongo drum looks like and you're probably actually picturing a djembe…I was only just educated about this on Tuesday). My professor usually says a set of words and we play the beat back to her. The phrase she said was “So much to remember.” As soon as she said those words something clicked in my head and the dream I had last night came flooding back into my mind. In my dream, Isabel never actually died. She recovered and we were just living our lives as though nothing had happened. I woke up from this dream heartbroken after realizing that that’s all it was, a dream. Dreaming about Isabel is hard. Dreams give me an opportunity to see her and I cherish that always. I often finding myself wanting to be asleep just to have the chance to see her for a little while. But waking from these dreams rips me from those moments and like I did today, I often wake up from a dream with Isabel in it and am in a daze for the rest of the day, longing for a life that Isabel is actually a part of.

Sometimes I feel myself conflicted in wanting to talk about Isabel. I get really stuck on the fact that I have to talk about who she was, not who she is now. But there is also something really special about talking about my sister to people who didn't know her. There are several people in my life now that I really wish Isabel could have gotten to know. And at the same time, I truly believe all of those people would be so positively affected by having her in their lives. I remember talking to someone a couple of days after Isabel passed and she asked me to tell her a good memory I had of her. In that moment I did what most people do when someone asks you what your favorite movie is and you suddenly forget every movie ever made. I couldn't think of a single memory of her. Maybe it was because I was sad and couldn't think straight or it could have just been my terrible memory failing me once again, but I’d like to think it was because I have so many amazing memories of Isabel and wanted to choose the best one to accurately depict her and who she was. As time has passed I have been reminded by many people of memories of Isabel and of qualities about her that truly made her who she was. All of those things that I have always loved about her are still here with me - I wish she was still here, with all of her quirky traits. But I am here and although Isabel is not, I feel honored to be able to keep the memories of my beautiful sister alive.

My family and I are starting to compile our favorite memories or favorite things about Isabel. We are all so grateful to have been such a big part of her short life and as I said before, I love being able to share memories of Isabel with others. I know there are tons of memories and stories of her from times that my family or I wasn't with her, so we ask that if anyone has any good memories of Isabel to please email them to me at whitcombga@appstate.edu or post them on my Facebook. We welcome all memories and are excited to learn more about Isabel through the experiences of others that were lucky enough to know her.

Here are some of my favorite Isabel memories.

Isabel loved having photo shoots for profile pictures on Facebook. Annie would take the best ones by having her smile. If the photos looked too forced, Annie would make her laugh which would cause the pics to come out genuine and the way we got to see them on Facebook.

She thought most foods were spicy even though they weren’t. She didn’t use the word correctly – ever.

She loved Christmas and would watch all the Christmas movies on Netflix no matter how cheesy. We had to listen to Christmas music in the car starting in early October.

She always claimed she didn't like kids and wasn't going to have any herself, but she could make any kid laugh and they always loved her the most.

She came up with the wildest names for her “future sons”, Dax and Jax

She was a terrible dancer and we would always tell her to stop when she would start dancing,  although I would pay to see her dance again.

She would never eat her cereal with milk, literally ever since she was in the 1st grade. She thought it was gross and soggy.

One time she was eating toast with nutella in France outside in the garden and she was being chased by bees and still wouldnt put the toast down

She made my mom the best cards for Mother’s Day, birthday and Valentine’s Day.

She drew the best cartoons and had the funniest characters.

She got the giggles so hard especially when we went to get our eyebrows waxed.

She loved to get her ears pierced but they would always take her earrings away from her when she was admitted to the hospital. After this happened a few times, she started returning home with an ear full of new piercings, along with the stories of who/how they were able to pierce their own ears without any nurses finding out.

As the marking of a year since Isabel’s death begins to creep up, I find myself often overwhelmed with how much it still feels like she only left us yesterday. I find myself discouraged, feeling like I'm drowning in this pain that often seems to be growing stronger. But as these days pass and I've had to make new memories without Isabel, I find comfort in thinking about the moments that did include her. I’d like to think that the phrase from my music class “so much to remember” made me think of my dream last night to remind me there’s so much good to remember about Isabel.

1-800-273-8255

One of the hardest things that I have had to deal with since Isabel died is the feeling of “I wish you were here so we could experience this together”. These moments happen every single day, when I’m sitting on the couch watching The Office, when I’m riding my bike on the Tobacco Trail, when I’m walking down the hallway and just want to peep my head into Isabel’s room and see her chilling on her bed. When something good happens, when something bad happens, when something funny happens. No matter what, it’s always “I wish Isabel were here too.” 
One thing that reminds me a lot of her are songs with messages. Isabel really loved music. She loved songs that had meaning, ones that she could connect with, that spoke to her. In some of her past blogposts, she referred to songs that were important to her because she found comfort and strength in the words. So when I heard this song, 1-800-273-8255 by Logic, I immediately thought of Isabel. I’m not a great summarizer so I encourage you to just listen to the song but I will try to give a little explanation if you really don’t plan on listening. The song title is the phone number of the suicide hotline and the song starts out with Logic singing to the suicide hotline about how he wants to die, how he can’t keep going, that his life doesn’t even matter. The song then transitions into the “operator" telling him that he doesn’t have to die. That these feelings will pass and things will get better. Then by the end Logic realizes this is true and he sings that he doesn’t want to die, he finally wants to be alive (again just listen to the song it’s better than this explanation). When I heard this song I wanted Isabel to be here so badly. The thing I regret most is not telling Isabel more. I should’ve told her all the time that I loved her, that things would get better, that I really knew how hard things can be but that she was strong and that I truly believed she could make it, but I didn’t say it enough. And when I heard this song, it was hard because it is a song of what I should’ve said. One of my favorite parts of the song is Alessia Cara’s verse.

It’s the very first breath

When your head’s been drowning underwater

And the lightness in the air

When you’re there

Chest to chest with a lover

It’s holding on, though the road’s long

And seeing light in the darkest things

And when you stare at your reflection

Finally knowing who it is 

I know you’ll thank God you did

This is the part I would’ve played on repeat for Isabel. It's saying that yes things are so hard now but it won’t be like this forever. Things will get better and it will be worth it. Since Isabel isn’t here anymore and I can not dwell on the things I should’ve said to her, I am sharing this song first of all because I believe Isabel would’ve enjoyed it and maybe even posted it in one of her own blog posts, but also in hopes that maybe someone else will find some peace in the lyrics. Remember that you do not have to die, and most importantly that you need to Stay Strong. 

Radical Acceptance

Today, it has been 38 weeks since Isabel’s death. I honestly can’t believe it. I don’t want it to be so long since I last got to spend time with her. I can still picture her sitting in her favorite place in our family room. I can still imagine that she is lying in her bed down the hall. Unless we have guests over for dinner, our family hasn’t sat down for dinner at our kitchen table since she has been gone. It is too painful to see her empty place.

From my own experience when I lost my husband, Giles, I know that the first year is the hardest. Each day is the anniversary of something. For Isabel, the year leading up to her death was actually pretty great. So the anniversaries of these days and weeks are incredibly bittersweet.

This week ahead, for example. One year ago, Isabel was getting ready to spend the month of July in France and Italy with her aunt. This was a magical time for her and filled with stories that I hold on to.

A couple of weeks ago was the anniversary of her graduation from high school, a feat that had seemed unimaginable the year before when she was in and out of the hospital. It is impossible to overstate how hard Isabel worked to be able to graduate from high school. She crammed her whole senior year into one semester, and finished and published her book during this time. We still laugh when we remember the online guitar class she took – a course that had really crazy assignments. Her thoughts on those assignments were priceless. Such great memories.

Realizing how quickly we are speeding towards the one-year anniversary of Isabel’s death is frightening. On the one hand, I just want to get it over with. On the other hand, I don’t want the vivid memories we have of her to diminish in any way. I know that time can dim those memories and that scares me.

When I think these confused thoughts, I realize they represent a profound dialectic. Of course that makes me think of DBT – dialectical behavior therapy, something that is a big part of current treatment programs for depression and eating disorder recovery.

Anyone familiar with Isabel’s blog posts or her book knows that she learned and used DBT skills extensively. At one point during her illness, she and I attended a six-month DBT class for parents and teens. While six months is a long time commitment, my only wish is that I had done this before I became a parent. Or at least before I had teenagers! When you look up DBT, you will get the mistaken idea that it is only for people suffering from severe mental illness. This is far from reality and totally misses the point. DBT provides critical life skills that are useful for everyone – how to live more meaningful lives, how to regulate our emotions better, how to listen to others more carefully, how not to judge ourselves or others. In the DBT class, I learned to say “but” less often, focusing instead on “and”.

The dialectic is what is critical here and it’s honestly not very easy to understand. This is the best explanation I could find:  

The word “dialectical” describes the notion that two opposing ideas can be true at the same time.     In DBT, there is always more than one way to think about a situation, and all people have something unique and different to offer. A life worth living has both positive and negative aspects (happiness, sadness, anger) and all of these aspects are necessary and valuable. It is sometimes hard to accept ourselves and our actions while simultaneously recognizing the need for change. Dialectics allows for a balance between acceptance and change, both of which are necessary for establishing a fulfilling life .

Source:  Peachtree DBT

I realize that my desire to get this first year over with AND my fear of losing sight of my beautiful daughter is part of acceptance. It doesn’t make it any easier though. One of the DBT skills that Isabel found most helpful was radical acceptance. It means just what it sounds like – accepting reality. She named her blog Grant Me the Serenity, because the Serenity Prayer was so meaningful for her. It is all about acceptance.

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

 Isabel learned to accept many difficult realities through her months of treatment and I know I have to follow her example. Our family has lost a lot and we are still trying to come to terms with this. I don’t have any profound thoughts or magic to share. Life can suck. AND we are going to get through this.

Bridge Over Troubled Water

In the summer of 2015, Isabel spent two months outside of Chicago at a residential treatment program for females struggling with depression, eating disorders and/or substance abuse. Never in a million years would I have thought I would send my child so far away for something so serious. Like many parents who find their children in overwhelming situations, we end up making decisions that are incredibly hard and heart-wrenching. And we have no way of knowing if the decision is right or good. With each decision, there is always hope.

By the time Isabel went to Timberline Knolls, she had spent 6 weeks in UNC’s partial hospitalization program for children and adults with eating disorders, followed by two separate inpatient hospitalizations (3 weeks each) for depression and a suicide attempt. With the assistance of her UNC treatment team, we discussed the need for her to spend time in an environment where she could learn more coping skills through dialectical behavior therapy, psychotherapy, and so on. Why Illinois? I can tell you that the first time “TK” was mentioned, I laughed in disbelief at the thought. We considered several other places, and I called and talked to staff and doctors at each of them. I finally looked at TK’s website and was surprised at how I felt a sense of relief. It seemed like one of the few places that wasn’t geared solely to eating disorders, or depression. It seemed more holistic. It was in a beautiful environment with trees and gardens. And Isabel was sold on it because it included animal therapy – plus Demi Lovato had stayed there for several months!

Her time at “TK” wasn’t smooth sailing. As anyone who has read her book knows, she had two inpatient hospitalizations while there, one of which was like a cross between the Shawshank Redemption and One Flew Over the Cuckoo’s Nest. And she certainly didn’t come home ready to cope with whatever came her way.

When I arrived at TK the day Isabel was discharged, she was so happy to be coming home. We got into our rental car for the one-hour drive to the airport. Readers of both Isabel’s blog and her book know she loved music and found meaning in the words of her favorite songs. In the car, I played a song for her that held meaning for me and how I felt about her – Bridge Over Troubled Water, by Simon and Garfunkel. Both of us cried all the way to the airport.

I didn’t think much about the song after that summer – until one night a few days ago, I woke up suddenly with the music stuck in my head. I have no idea why. I am trying not to over-analyze this (!) but I like to think that Isabel wants to remind me of the beautiful words of the song and that she wants to dry my tears and ease my mind now.

How are we all doing now? No day or even hour is necessarily the same. One day I might feel okay and the next I’m not. It is pretty much the same for Philip, Genevieve and Annie. Philip just graduated from Virginia Tech and we all found joy in celebrating his accomplishments. Genevieve and Annie are home for the summer from Appalachian State University and have summer jobs. Tears are still very much a part of our lives. We miss Isabel so incredibly much. I’m glad it’s warm outside now and I can wear short sleeves. Reading “stay strong” on my arm provides me with some level of comfort. These are Isabel’s words in her handwriting. Our family’s motto.

Bridge Over Troubled Water

  By Simon and Garfunkel

When you're weary, feeling small

When tears are in your eyes, I'll dry them all

I'm on your side, oh, when times get rough

And friends just can't be found

Like a bridge over troubled water

I will lay me down

Like a bridge over troubled water

I will lay me down

When you're down and out

When you're on the street

When evening falls so hard

I will comfort you

I'll take your part, oh, when darkness comes

And pain is all around

Like a bridge over troubled water

I will lay me down

Like a bridge over troubled water

I will lay me down

Sail on silver girl

Sail on by

Your time has come to shine

All your dreams are on their way

See how they shine

Oh, if you need a friend

I'm sailing right behind

Like a bridge over troubled water

I will ease your mind

Like a bridge over troubled water

I will ease your mind

In Honor of Isabel's Birthday

To remember Isabel on what would have been her 19th birthday, we have posted some of the art work she did in the last two years of her life.

The Isabel Whitcomb Stay Strong Fund

We are excited to announce that in January, the University of North Carolina Center of Excellence for Eating Disorders (CEED) established the Isabel Whitcomb Stay Strong Fund. This fund will create an ambassador's program, with the vision of building an education and referral network in North Carolina, in order to provide children and families with evidence-based care for eating disorders in their home communities.  

The program has three broad aims:

       1. Educate pediatricians on the detection and treatment of eating disorders in their patients and help them guide parents to family-based therapy resources. 

       2. Identify and train 7 therapists in family-based therapy. Ensure coverage by focusing on the major metros in North Carolina. Provide weekly supervision via video-conferencing. 

       3. Measure the fidelity of family-based therapy practice in sessions via audio recordings and the expansion in services through the Ambassador program. 

       As anyone who has read Isabel's blog posts and her book already knows, improving services for people struggling with eating disorders was one of her goals. You can help achieve this goal by supporting CEED with a donation to the Isabel Whitcomb Stay Strong Fund. 

What I Have Learned So Far, by Genevieve Whitcomb

I wish that I could write this personal narrative from a point of view that is inspiring and full of strength after getting through these past few months following Isabel’s death. But in all honesty I feel like those are the things I’ve been lacking most since she passed. Isabel’s death has changed me in ways that other people may never be able to see and in ways that I may never even be able to explain. I wish that I could write something strong, the way Isabel did and the way she would want me to. But I wouldn't do her justice and as I write this, having to think about things I have been keeping pushed aside, I have experienced some of my weakest moments, and felt far from strong. So I will write about what I know I have learned from Isabel’s death: I have learned how to love.  

   

There was a poem I read somewhere that said “What do you do when there’s nothing but pain left inside of you, and what if everything we were looking for existed only in our dreams, how do you explain something you don't even understand yourself.” I read these lines and have never felt like something described the way I feel so well. I don't really know how to explain the way Isabel’s death has changed me, because I don't fully understand it myself yet. I don't understand grief at all. The way it tears me apart some days, leaving me to feel like my bones are made out of pain and my mind made out of guilt. And other days it’s just there, watching from a distance, I can always feel it but it doesn't always make itself known. The part of that poem that resonated with me the most is the line that says, “what if everything we were looking for existed only in our dreams,” I often have a recurring dream about Isabel. It’s a simple dream. My family and I are together and all of a sudden, Isabel will just come back. I can never remember where we are and there’s never any discussion about where she has been, but every time I see her a feeling of extreme happiness rushes over me. This is a happiness that I have genuinely never felt before, a happiness that I didn't even know I was capable of feeling. It feels so real and as soon as I see her I run to her and hug her and tell her how much I love her over and over again. She always laughs it off wondering why I’m confessing my love to her, but I never stop telling her and I never let go, always terrified that if I do she might disappear and the dream will be over and she will be gone again. Every time I wake up from that dream the first thing I want to do is text Isabel and tell her that I love her and miss her. I think that says a lot. I think that this is what I have struggled with the most since Isabel’s death is not loving her enough while she was alive.

I often get stuck on thinking about how much I hate myself for not doing more to help Isabel, when I knew she was struggling. I ask myself over and over again why I didn't do more to make Isabel feel included, to make her feel loved and make sure she was okay. Why I didn't do more to be a better sister, a better person to her. If I could go back I would change everything. I know that Isabel had a mental illness, a chemical imbalance in her brain and that something as simple as love wouldn't have saved her. But I don't care. If I could I would go back and love her loudly every second. I would make her feel the love that I have always felt for her but never used to show. I would tell her how funny she was, because even the memories of her that I have still make me laugh. When she was younger she taught our dog Max how to shake with his left and right paws but accidentally taught him the wrong way. When my mom told her that she had mixed up her left and right she looked at our dog and said “Max, I have some bad news.”  I would tell her how smart she was, because even though she ended up having to take classes online and had more work than anyone could handle, she still graduated from high school. I would tell her how proud of her I am, for helping people and for fighting for what she believed in and what she was passionate about. For writing about her struggles when I couldn't even talk about mine. For staying strong for so long and for being a light in people’s lives when hers was often dark. But now, I take all the things I can’t do with Isabel and I use them. I use them to love others while I still can.

Thinking about all the things that have changed since Isabel’s death seems endless. My whole world seems different. All sorts of dynamics in my life are changed because of the absence of Isabel. Every day is filled with moments that I am forced to remember that Isabel is no longer here, that I can no longer text her when I see something funny or draw with her when I go home for breaks. But I realize that this is my new world. I realize that I have to accept that I will be living in a world without Isabel forever. I realize that I cannot be the person for Isabel that I wish I had been, but I can be that person for the people in my life now. I will use what I have learned from Isabel's life to help others and I will use what I have learned from Isabel's death to heal. I will love those around me the way I wish I had loved Isabel. I will care for my new friends and my old friends and make sure that they are okay, and if they aren’t, do what I can to help. I will always be aware of how my words and behavior are affecting the people around me. I will be kind to everyone, especially those who are not kind to me because if the years that Isabel and I did not always get along taught me anything, it is that sometimes the people who seem to be the least kind are the ones that are in desperate need of compassion and kindness. And most importantly I will carry on Isabel’s goal in life to stand up to the stigma surrounding mental illness. 

Dividing Lines, by Susan Carroll Whitcomb

How many things in life are dividing lines that separate the before from the after? I read these words in a detective novel of all places (thank you, Tyler Dilts), and they jumped out at me.

I’ve been thinking about the dividing lines in my own life. We all have many. College, marriage, births of children, death.

Isabel’s death seems like the Grand Canyon of dividing lines in my life, even more than losing her dad. Nothing will ever be the same. It is really easy to make a long list of all the terribleness that her loss has brought to me, her brother and triplet sisters. It is harder to think of positive things since it feels like I should never be able to think of anything positive associated with my child’s death.

Is there anything constructive or optimistic? Since this giant chasm opened up as a dividing line to a new “after”, Isabel’s blog has been viewed over 45,000 times all over the world! About a week before she died, the number was around 6,500, and when she announced this, we gave each other a “high five” because we thought it was so amazing. I assume 45,000 page views means that some people are finding it helpful and probably sharing it with friends. (Our family has decided to continue Isabel's blog and post our thoughts periodically.)

Just before the holidays, we learned that the UNC Hospital Center for Excellence for Eating Disorders (CEED) has established the Isabel Whitcomb Stay Strong Fund. Thanks to donations from so many friends and family following her death, CEED has received well over $100,000, a lot of money for this relatively small but impactful center. As a result, a new program will be underway this year with the objective of building an education and referral network in North Carolina. Therapists will be identified and trained in family-based therapy for eating disorders across the state, and North Carolina pediatricians will receive education on the detection and treatment of eating disorders in their patients and help them guide parents to family-based therapy resources. A fundraising campaign will be launched by UNC Hospital to ensure this program will continue for years to come. Our family has made a commitment to be involved with this, and we will soon post the link to how anyone can contribute to the Fund.

Wow! These two positives make me feel both happy and incredibly sad. I am fiercely proud of Isabel. But I wish she was here to spearhead these achievements. I wish she could spend the next 80 years inspiring people with her stories and quirky wisdom. I imagine all of the things that could have been.

On the back cover of her book, Stay Strong, Isabel wrote “I am determined to be someone in this world, and I am determined to change people’s lives.” I hope she knows she is successful. And I hope she knows that on this new, unasked-for side of the dividing line, we can work to carry her legacy onward. In spite of my loss, I will Stay Strong.