Transcriber: Eunice Tan Reviewer: Tanya Cushman
It was Thanksgiving of 2014.
(Laughs)
I'll never forget this holiday.
You see, just earlier that year,
I found out that I was now out of remission
and diagnosed again for a second time with both aplastic anemia and PNH.
These two blood disorders would take over my life.
The only cure for them is a bone marrow transplant,
and I was in search of a match but couldn't find one.
I would spend many days inside, not able to go out,
because something as simple as catching a common cold
could result in hospitalization for two to three days.
I remember this holiday, specifically,
for the abundant amount of food delivered to our house.
(Laughs)
Let's just call it what it was:
it was a feast.
There was a knock on my parents' front door,
and standing on the front porch was a family of five
with pans of food in everyone's hand.
Smiling faces and the sweetest family we knew from church
entered our house with hellos and "I hope you're feeling better."
But what also entered our house was food -
lots of it.
There was everything from green beans to macaroni and cheese to dressing -
oh, and of course, cranberry sauce.
We were more than thankful to this family for thinking of us.
After finding a place to sit the full feast that was just prepared,
my family smiled and nodded,
trying not to give away the secret of what had just happened
less than 24 hours before they had arrived.
You see, the night before,
we were running around the house like crazy people,
trying to either eat up food that was stacked high in the fridge,
donate food that we had never even touched
to a homeless shelter,
or check expiration dates on other food people brought us
once they found out I was sick.
Oh, and this became a reoccurring thing.
Food became the center of relationships with friends of my family and me.
I began to notice a cycle,
an unspoken rule people lived by when they found out I was sick.
I wanted to understand
and find an answer to the one question that has always baffled me:
why is it when you're sick, people want to bring you food?
(Laughter)
I mean, what is it?
What makes people think that's all we need?
The many people that I would ask this question to
would throw their hands up in frustration
and say, "Because we don't know what else to do!"
People bring food because it's all they know.
People don't really understand
or know how to deal with the spouse, coworker, relative
that has just been given news that may change their life forever.
All people know is everyone's got to eat, right?
(Laughter)
My many encounters with friends that would bring food to the house
started off with them entering the house with food in hand and a smile.
And then we would make our way to the couch,
where I would give an update on my health journey
and tell them when my next doctor's appointment was.
Then it would usually get a little silent.
Not knowing where to go from here,
the awkward silence would be filled with statements
like "Well, you look great"
or "You don't look that sick to me."
I began to notice that people were scared to reach out for a hug,
anxious to really know what was going on for me
but didn't want to ask,
or they just sat on the edge of the couch, fiddling their keys with a nervous look,
while I sat on the other couch with a mask covering half my face,
feeling tired and weak most days.
After seeing this time and time again,
I began to understand that people bring food as comfort
because they don't have the words to say
and they don't know the right words to say.
They're scared they're going to offend us
or think that not being in our life is best,
because they're not causing us trouble.
To be honest,
there may be days where we shut you out,
and there may be days
where we don't feel like answering your phone call.
But to know that you were there during the worst of times
is something that we will always remember.
Okay, so now I want to save you all a lot of time and money -
I mean, a lot of casserole dishes,
I like to say.
I'll bet some of you are now thinking
about how much money you've spent on food for people in this situation.
So here are a couple things to do.
First -
as sick people, we are still ourselves,
and we need everyone else around us to just be themselves too.
We need that same sense of normalcy.
We need that phone call from our friend that called after work
just to see how our day was.
And we still need that wild and crazy friend
that says whatever is on their mind and isn't afraid to offend us.
Normalcy is the answer.
You being normal
helps us to see that we are normal people that just hit a few bumps in the road.
Food is great;
food is nice.
But food does not take the place
of a precious relationship you once had with us.
I get it.
People don't know how to deal with us.
They try not to stare at the scar on our chest from surgery
or the bruises that cover our arms from the nurse trying to find a good vein.
They try not to ask questions.
But we need that.
We need the sense of knowing that if we answer the phone that day
and just say, "Today was not a good day,"
that sitting in silence from there
could bring so much comfort and peace into our lives.
Now, we all handle health issues differently,
but one thing is true:
we just need you to just be you.
Next -
as a member of a Facebook group focused on blood disorder awareness,
I took the time to ask patients in the group,
"What's something you wish someone would show up on your doorstep with?"
Or was food really the best option?
Many of the responses I received read,
"When the person truly took the time to research and understand my illness,
they were able to bring things that could truly help me in my journey,
and they were able to communicate with me better."
That's it.
Simple enough.
None of the patients said that they didn't enjoy the food,
but many say when you understood what we were going through,
you were able to better serve us,
whether that's knowing just how much chemotherapy dries out our skin
and how a specific type of lotion works best
or buying us the world's best thermometer for us to take our temperature at night
or just reading up on the terminology and jargon.
Knowing you took the time
to truly understand what we were going through
goes a long way.
As human beings, relationships are a must.
We learn so many things from each other.
We learn how to become a better us,
how to deal with conflict and resolution,
highs and lows,
and how to communicate well.
And relationships with sick people
can teach you how to communicate during a trying time,
how not to become nervous around us,
scared to say the wrong thing.
Relationships help us out as well.
As our lives have just been turned upside down,
we're learning to deal with the new normal.
Relationships with us should stay the same,
bringing that same sense of normalcy.
Of course, we all handle health issues differently,
but to have a friend to stay consistent,
just like they would if we weren't sick,
brings more comfort and peace than food ever could.
Food is great, food is yummy, food is sustaining.
But food does not sustain a relationship.
Although I've always appreciated the food people brought me,
what I appreciated most was the person that brought the food,
the individual that truly took the time to research and understand my illness -
that person.
So the next time you have a friend or family member in the hospital,
stop and think:
what do they really need most from me?
Thank you.
(Applause)