One Year.

Dear Brother,

One year. 365 days. Some days it feels like it was yesterday and other times it feels like it wasn’t. Grief. There is no set timetable. I’m learning a lot about living with grief. I haven’t written a blog entry since the day I let all of your followers know your funeral arrangements. In fact I haven’t written anything since. My head is SO full of so much that I want to say, yet I can’t get my thoughts out. Grief. Don’t ignore it.  

I find myself replaying this day in my head. I’m so damn grateful that you were able to take a nap and never wake up. Of course I knew the end was coming, it just took me by surprise. I should have known better. This was the first weekend, since you entered hospice in February, that you told me to stay home. Selfishly, I was relieved to have a weekend at home without a car or train ride. When I got the phone call that you had taken a nap and wouldn’t wake up, my heart sunk. I am so grateful that you were surrounded by love – Livia, mom, Aunt Gwin and of course Lucy. Working in hospice, I have been present with many people who have died. I have also consoled many loved ones that left the room to get a coffee or take a shower and were not there when their loved one died. I was now consoling myself because after hearing the hospice nurse relay the facts to me, I knew you didn’t have long. I got dressed real quick, packed a bag like a madwoman and jumped in my car to make the trip. I remember a couple things about that car ride.

1.          Laughing to myself because I was trying to find a station or playlist to listen to and thinking to myself, ‘what music station do you listen to when you are driving to be with your brother that will probably be dead by the time you get there’. (I could not bring myself to listen to Howard Stern, because I knew I would hear something that I would want to tell you..and you wouldn’t be there to laugh with me – Grief.Realizing how to move on ) I settled on your 90’s type of music. I heard INXS, Echo and the Bunnymen and then U2 came on. Beautiful Day. I turned the volume up and sang at the top of my lungs. That was our song. It’s crazy that I looked at the clock when the song came on and it is burned in my mind. A couple months after you died I was looking through documents and I saw your time of death. You were there singing with me, weren’t you?!
2.  2  You know the friend that you can call when you’re driving to be with your brother that will probably be dead by the time you get there? I have a great one. And that is what I did. I called her. She knows me so well that she could hear it my voice and I didn’t need to say another word. She told me about her weekend and the funny things that happened with her daughter. I don’t remember how long we talked but I will always be grateful for that. Grief. Know who your helpers are.

When I finally arrived at your place, mom greeted me in the lobby. I knew. What I knew was that you needed me not to be there. I get that.

What I didn’t get was how difficult this living without you would be. I was prepared for you to die. You were in hospice. I actually had warning unlike when dad died. Why is this so damn difficult? Grief. Go easy on yourself. I am constantly trying to answer this question. As you know and loved to make fun of me for is that I love research. So, I dove head first in on the research topic “the death of a sibling’ and guess what? There’s not much out there. There is a ton of research on losing a spouse, losing a child, and losing a parent but not much on sibling.

I was taken aback when one day someone asked me if I had a siblings. WOW! At that moment I didn’t know how I should answer that! I wanted to shout, “YES, I HAD THE GREATEST BIG BROTHER… WHO DIED” but I didn’t have the energy to go into it. Well, I felt terrible that I didn’t know how to answer that question and I vowed that I would always have the energy to tell your story.

Then there was the time when I took my car in for an oil change. The guy behind the counter jokingly said, “welp, get your brother on the phone” as the mechanic came in with a laundry list of things that he wanted to do to my car. I always called you and made you talk to them to figure out what I actually needed and what I didn’t need. With tears in my eyes I told that guy, “no I will not be calling my brother, he taught me what to do”

And this list goes on…the amount of times I wanted to call you or text you when mom said something funny, or the Sox made a trade, or I needed advice on my pension investments…

I can’t pick up the phone and hear you say, “buddy the Elf what’s your favorite color”, so what do I do now?  

I have chosen to honor your life and honor your memory. One of my dear colleagues asked me once, “what does your grief look like?” keep a journal, write it down and let me know. I kinda laughed on the inside thinking….I know how much you LOVE when I keep a book of my research and thoughts (yes, I still have your cancer books). But since I was at a loss for written words, I tried my hardest to just be present and aware. Guess how I knew when I was starting to shake the initial shock of all of this? I found myself singing in the car. Out loud. I realized I hadn’t done that since the drive up to Chicago when you were dying.

Last fall, I was fortunate to have coffee with Dr. B.J. Miller a world renowned palliative care doctor out of San Francisco. He told me that the one regret he has is that he never mourned the loss of his sister 20 years ago. He didn’t allow himself to feel the grief and he feels he missed out on so much. Out of grief comes great creativity. That has really stuck with me and made a huge impact on me.

In honoring your life and memory I will continue to talk about colonoscopies and early onset colon cancer. I will also work to promote hospice and palliative care to anyone that will listen. Who am I kidding?? Even if they are not listening I will talk! They are the two most important fields in medicine. Facing a Stage 4 cancer diagnosis in your early 40’s, you had SO many things you wanted to do before you died and you weren’t able to. I tried so incredibly hard to get you onto palliative medicine and reap the benefits of it. But for many reasons it didn’t happen. I don’t want that to happen to anyone else. To get you onto hospice was even a struggle when it should not have been. I want to change that for the next person. I think about Aunt Sharry and grandma dying without hospice and it breaks my heart.

I am now the president of the Gateway End-of-Life Coalition. It’s a great organization that promotes high quality end of life education. I speak to groups about hospice and palliative care, we educate on advanced care planning (remember how shocked I was when we were in the hospital for the last time and you said you didn’t have any of that paperwork done!!) and we host speakers to come educate our members about anything dealing with end of life. I definitely have found my passion and I do it with your memory always with me.

“I am so proud of you sis” is what you said right before you walked me down the aisle. You don’t even know how much those words meant to me. I promise I will continue to make you proud by working through my grief and keeping your memory alive. Who knows?? I might even start a support group for adults who have lost a sibling. Because why not? Out of grief comes great creativity!

I miss you every.single.day. I think about you every.single.day. I am grateful to have had a big brother like you. And I could not have been prouder of YOU, brother.

Xoxo,

Sis