Telling the Truth About Us

We are privileged to have a dear friend, Lindsay, as a guest blogger this week. Lindsay lost her sister at the young age of 27 to a long-time battle with anorexia. Sibling relationships are often complicated and challenging, but sometimes illness adds to their complexity, especially a disease such as anorexia with extreme physical and emotional consequences. Lindsay shares her perspective on their relationship and her personal and honest view of its continuing meaning.

It’s hard to tell the truth about someone you loved who died.

I sat down to write this on the day that would have been my little sister’s thirty-second birthday. The last time I saw her we were at my parents’ house. I went into her bedroom, woke her up, and hugged her hard and for a long time. She had relapsed and was very sick. I told her to take care of herself, to get the treatment she needed, and that I loved her. The last thing she said to me was “I’m not going anywhere.”

Three days later she was dead.

Her death was both sudden and, in a way, not a surprise. She was sick for fifteen years, and her last relapse was the most severe. Anorexia is a chronic illness that is sometimes, but not always, terminal. We did not know if it would kill her, but everyone who loved her lived for many years with the fear that it would.

She died four days after I got married, when I was twenty-four hours into what became my aborted honeymoon. The next couple of weeks were a blur of contradiction. We mourned my sister’s death while scrolling through photographs from our wedding. My husband coined the term “congratdolences” from cards we got congratulating us on our marriage and expressing condolences for our loss. I ate baked goods sent by friends and snuck cigarettes bummed off strangers.

My sister was one of the most intelligent people I have ever met. She was a ruthless and skilled scrabble player. She loved to watch surgeries on the Discovery Channel. She was wickedly sarcastic and intensely loyal. She could be loving and deeply empathetic. She had huge, deep blue eyes and a wide, infectious smile.

My sister was tortured. She was anorexic, depressed, obsessive, and cripplingly anxious her entire adolescence and adult life. She agonized over decisions. She was paralyzed in social situations. She was deeply insecure; she never saw herself as smart or beautiful or funny or fun.

My sister was also kind of an asshole. She was self-absorbed. She was often passive aggressive. She was critical of others and could be downright cruel. It was hard to tell where my sister’s illness ended and where her actual personality began; hard to know for what she should be held accountable and what was beyond her control.

The truth about my sister is that she was all of these things at once. She was smart and funny and loyal and loving; she was tormented and insecure and ill; she was kind of an asshole.

I loved my sister, and I resented her. I was fiercely protective of her, yet her illness and the concomitant sturm und drang was often too much for me, and I deliberately withdrew even knowing it hurt her. One summer when she was in the hospital, I visited her every day, and we once went a year without speaking. I miss her every single day, and yet there are ways in which my life is simpler, even easier, without her.

The truth about our relationship is that it was all of these things at once. We were good to one another, and we were terrible to one another. We were close but sometimes estranged. We hurt each other accidentally and on purpose. She did everything she could to sabotage her relationships with the people she loved, and it was easy to let her.

It’s ok to remember the complex, hard, shitty parts of a relationship, of another person, of the way you were with that other person. It’s ok to see that and acknowledge it and look it right in the eye. It’s ok to allow someone to be imperfect in death. It’s ok to lay bare your own imperfections and failings.

It’s hard to tell the truth about someone you loved who died. But, for me, it is a necessary part of grieving and celebrating and acknowledging my sister’s life and our relationship with one another. The conflict no less defines sisterhood than the love, and to leave such a substantial part of the relationship unacknowledged is to discredit the resilience of that bond. In a complicated, difficult relationship, there are a lot of feelings: love, yes, but also anger and resentment, guilt and regret. Where do those feelings go when the other person dies? For me, mourning my sister and truly accepting and coming to terms with her death meant being honest about who she was and the relationship we had. It meant not glossing over the hard parts. It meant remembering all of her, every part of us. It meant forgiving her, and forgiving myself. And ultimately, telling the truth about us allows me to miss her and mourn her and celebrate her, the real her, all of her, with my whole heart. 

Celebrating National Siblings Day

“A sibling is someone who knows all about you, but loves you anyway.”

In honor of National Siblings Day, we wanted to take a moment to recognize how important siblings are and that they deserve to be honored. Siblings Day is recognized in several states but not yet as a federal holiday. Claudia Evart started the Siblings Day Foundation after losing both of her only siblings. The Foundation has been working to establish April 10th as the official federal holiday of Siblings Day. Click here to check out their work and sign the petition:

Siblings shape us, mirror us, and understand us like only lifelong best friends and rivals can do. We love hearing and reading stories about siblings’ bonds, experiences growing up together, and changing and deepening friendships into adulthood, like Satellite Sisters' UnCommon Senses and Little Women. We know how fortunate we are to have such amazing sisters and feel that our personalities and lives would be much less interesting if we didn’t have sisters. Certainly, we would not have survived the most difficult year of our lives following our sister Colleen’s death without our sisters to lean on, to vent to, to commiserate with, to cry with, and to laugh with. We are stuck with our sisters - we can’t give them away, fire them, or break up with them - and we are so happy.

Christmas sister photo

For us, this day also brings some sadness as we reflect on our loss of Colleen as our big sister. A void has been left in our lives. Similar to Mother’s Day or Father’s Day being difficult for those who lost a parent, today may be hard for those of us who have lost a sibling. We think about Colleen today, how much she influenced us, and how much she did for us. She would do things for us that we were too scared to do, like asking a boy to a dance. When our babies were born, she came to help and saved us by cooking, doing laundry, grocery shopping, rocking and feeding the babies in the middle of the night. She was always trying to make our lives easier, but she was the one who needed an easier life. While Colleen cared for us for most of our lives, it became our turn to care for her at the end of her life. When she battled end-stage cancer, we took on the most challenging and significant role, one that personally changed us. Siblings are bonded like glue and you can't get rid of them - and that also means that they will be with you until the end. On this great holiday, we want to give a shout-out to sisters and all siblings, but especially to those sibling caregivers facing the hardest role of their lives.

A Caregivers "To Don't" List

As we lay awake at 3am, we often ran through our never ending "To Do" lists. There was always a new symptom to consider, a new worry or development. Our inner monologue would include things like: "We need to figure out physical therapy exercises or maybe a stationary bike would help. And I need to read more about nutrition. Maybe we should sign up for one of those meal delivery services. Did I pack the kids' lunches? We also just need a humidifier in every room for Colleen's comfort." 

While our sister, Colleen, faced end-stage cancer and increasing symptoms, we were working moms living in different states and traveling each month to visit her and to help care for her. If we were not with our sister physically, we were there mentally, constantly thinking of ways to do more, and seeking updates from the home front. If you don't yet know us, read more about our story

As very close sisters, we would have done anything to change the outcome for Colleen. After trying to wrap our minds around the fact that there was no more treatment available and our sister was going to die, the only thing left in our control was to try as hard as we could to improve her quality of life, whether it was via massage, nutrition, or just some good laughs as we spent time together. We were always thinking of ways to make her feel more comfortable. We lost sleep, racked up airline miles, wrote endless email updates to our sisters, and learned all that we could about wellness and alternative therapies. We turned to Cheetos, Zingerman's coffee, dark chocolate, and each other for comfort. 

We were proud to be her sister caregivers, but the amount of stress was overwhelming. We have read the research about coping which provides the usual advice, but seriously, stop telling us to sleep. We personally understand the need to "take care of ourselves," but don't know where to find any more time or energy to do that.  Caregivers are often told what they need to do. DO be sure to exercise. DO get enough sleep. DO try to be social and see friends. Yes, these seem like good options to stay healthy, but how is that actually accomplished when you are a working mom who lives out of town from a dying sister? So, why keep adding to a caregiver's long "To Do" list and guilt them into these things that they already don't have time for. Instead, save them time and tell them what NOT to do. 

DON'T fret that you aren't being a good parent right now. It is not possible to be good at everything. You are focused on being the best caregiver there is and that should be applauded. Your children will be ok and may learn to be more empathetic.

DON'T worry about the laundry today. It will still be there tomorrow. You can take a nap instead of folding laundry. In fact, napping should always be prioritized above laundry or anything else on the To Do list.

DON'T feel obligated to go to that school happy hour. It will just be a reminder of how everyone else is leading a normal life and not caring for their 39-year-old dying sister. You may start crying in your drink to other parents that you don't know very well and that will be just be embarrassing when you see them at drop-off in the morning.

DON'T exercise at the gym because you may start crying on the treadmill. It is one of the few times that you have time to yourself and can think about the sad tragedy going on. Maybe just stick with a walk outside to obtain a little more privacy in your public crying.

DON'T cook tonight and instead spend the extra time watching a "New Girl" marathon with your sick loved one. The take out food may not be memorable but the many laughs that you share together will become happy memories.

DON'T listen to the misguided advice and ignorant remarks. Most people have no idea how to help you. None of your friends are watching their sister die of cancer and they can't relate to your public crying and exhausted looking face.

But you are not alone if you are a young adult sibling caregiver. We, too, have had this experience and understand how impossible it is to keep it all together as a working parent and caregiver. Our advice is to stop worrying about all of the things to do and instead, focus on what really matters- being with your loved one and caring for them as best as you can.  

Grief on a Lucky Day

May the leprechauns be near you,

To spread luck along your way. 

And may all the Irish angels

Smile on you St. Patrick’s Day.

- Irish Blessing

St. Patrick's Day is one of our favorite holidays but also a day when we miss Colleen terribly. We come from a big Irish family that loves nothing more than a cold Guinness, but Colleen loved this day the most. Colleen and her husband hosted annual St. Patrick's Day parties that were legendary. They invited family, friends, neighbors, and coworkers over for delicious green snacks and Irish cheer. She once made a veggie tray that looked like the Irish flag. Today we are reminded of her amazing theme party planning, her excellent cooking and baking skills, her love of green, and her vibrant spirit. 

On days when we don't feel very "lucky" or when we wish that we could celebrate WITH her, we try to remember our great fortune that we had Colleen as our big sister, role model, confidant and friend. We would be very unlucky, in fact, to have lived our lives without her at all.

So on this St. Patrick's Day, CHEERS to Colleen and to a new found feeling of luck. In her honor, we are launching our website today and hope that it reaches many of you! We are counting on the leprechauns to bring it to you...

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing