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.
- 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 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
