Kaity Kasper

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A Note To The Supporting Actors

"Can you tell me what to do?" he asked me over tea.  The sun was hanging low and a hot flash was creating a fireball in the pit of my chest.  "I keep having this come up and I just don't know what people need."

This has been a recurring theme lately - folks who want help knowing what to do in the wake of another's diagnosis.  Believe me, I wish I could give you all a miracle crib sheet that would make something like this less awkward for all of us.  But that would be impossible. 

Why?  How is it that after two trips through this special brand of hell I can't tell you all exactly how this situation needs to be navigated?

Because there is no one road through the bog of terminal illness.  To date, no one has been able to map out a direct route, so everyone handed a diagnosis is left to fumble through it with not much more than a matchstick and a piece of toast.  So no two paths end up being the same.

What I can give you is my candid input on what you may or may not want to consider when trying to figure out how you walk alongside someone trudging the slow journey down this unpaved road.  I'll be the first to admit that some of this sounds harsh, but I've seen both first and second hand how terribly some of these things can actually play out and I feel very strongly about them.  So if you are offended, I suppose I'm sorry.  But not really, to be honest.

Not all of these things apply to everyone, so the first thing I would tell you is to know your person and know yourself.  And then see how these suggestions fit your particular situation.

So now, without further adieu, my thoughts.

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1. Show Up.  That's it.  Don't try to fix it.  Don't try to be the hero.  Just show up, in whatever way that looks like for you.  I had one friend who would stop by between teaching yoga classes just to reheat my hot pack and bring me a fresh kombucha.  It took five minutes.  It meant the world.  Another drove three hours just to watch bad television with me.  Another was on constant french fry duty.  They didn't come to solve my problems.  They just showed up.  They sat.  They held space for me.

This might be hard to do.  You might worry your friend will look different, or feel different, or not know how to laugh.  You might be afraid you won't know what to say, that you will say the wrong thing, or that it won't be super exciting.  All of that might be true.  All of those things are probably absolutely true.  But you show up anyway.  Because you love your friend. 

If you cant physically be there, send texts, cards, emails.  Maybe your loved one needs space and doesn't want company (that was very much me very much of the time).  You show up in other ways.  I have one friend who travels almost constantly.  She has sent me a simple text reminding me I am loved every,single.morning since I went in for surgery.  She showed up.  An aunt hundreds of miles away sends me a card every week without fail.  She showed up.

Nothing is more painful than when you are scared and someone you love doesn't show up.

So show up.

2. Keep Showing Up.  The thing with illness is that in the beginning the entire world shows up.  Everyone is shocked by the diagnosis and sad and wants to do something - anything - to try to make things better.  But a few weeks in the same phenomena seems to occur as you see at gyms around Valentines Day - suddenly most people are gone.

Don't be one of those people.

Your friend may not feel like she can continually ask for help.  Even if people have told her to let them know what they can do, she may be hesitant to do so.  So keep offering.  About once a month a friend would text to remind me he was available to cook me dinner or mow my lawn.  Another consistently offered to walk Hope and pick up food for her if I was running low during chemo weeks.  Another to do my grocery shopping.  These offers meant so much because it took away the fear that people were tired of helping me.

The same goes for visiting, texting, calling, sending cards.  Make yourself a reminder to put a card in the mail once a month.  Schedule a quick visit during the days your friend consistently feels really crappy (I had a friend who always tried to come by on day 5 - the day of each round when I consistently felt mentally roughest).  Yes - I know life gets busy.  Yes - I know this person is sick for a really long time.  But she doesn't stop needing you once the shock has worn off and the dust settled a bit.  In fact, she probably needs you more. 

These kinds of things are marathons - not sprints.  Go the whole way.

3. Hold the Advice.  Take a note from the recovery community and try to remember that advice not asked for is criticism.  You think she needs to adopt a better diet?  She may be dying to change things but can only keep down junk at the moment.  You think some of her therapies are strange and not worth using?  When you are trying to save your life you can make those decisions for yourself.

I promise you that every patient has thought about everything she is doing far more than you have.  And she probably understands all the risks, potential problems, and pros and cons more than you can imagine.  What she doesn't need is everyone in her orbit weighing in.  So please - keep the comments to yourself unless she's specifically asked (or you've got something positive to say).

5. And the Stories.  She does not need to hear about the friend of a friend's aunt who had at terrible time with chemo and then died, or the guy you used to work with who had 3 recurrences.  Depending on your friend, it also may not help to hear all the positive stories in your arsenal either.  These stories can feel like you expect her journey to look a certain way or produce a certain outcome - or that her outcome would be different if only she had done what your Great Aunt Gertrude did when she had the same cancer. 

There is a caveat here.  If you know someone who used a lesser known treatment successfully, or who managed a symptom or side effect that your friend is struggling with, by all means - let her know you can connect her with those people or find out more information if she would like.  But this is a case of know your friend - too much information can get overwhelming, so feel out whether or not adding more options would be beneficial before you do.   

6. Let Her Feel What Shes Feeling.  I cannot emphasize this enough.  Do not tell her she has to be strong or optimistic.  Do not tell her you don't think she is coping well.  Do not tell her you are concerned for her mental state.  She has a terminal illness (and - as my spiritual director told me - even if you survive, cancer is a terminal diagnosis until its cured).  She is allowed to feel whatever she feels - happy, sad, angry, frustrated, scared, all of it. 

Yes, if things seem particularly bleak, encourage her to seek the help of a therapist.  That is not the same thing as telling her how to feel.  She gets to feel her feelings.  Full stop.

7. Talk About Normal Stuff.  The people I was most comfortable around during the chemo months were the people who asked about me and then two breaths later were telling me about their lives and problems and plans.  They were constant reminders that life was continuing and someday I would be part of the bigger world again.  Was it painful sometimes?  Yes.  But it made me feel normal and like a part of something other than cancer world.  

8. Don't Assume You Have An All Access Pass.  People seem to think that being diagnosed with a terminal illness comes with a side of losing your right to privacy.  If you are not in the dirt right alongside your friend, then you are not entitled to every intimate detail of what is going on with her treatment.  Feel free to ask how she is doing, but leave it alone if all she offer is "things are going well."  You are not owed more.

And for goodness sake, do not tell her what you need from her in this space.  For the time being, you get what you get and you don't get upset.  Maybe she just can't respond to emails or texts.   Maybe she can't get excited about something you have going on.  You do not get to dictate the rules right now and she probably already feels like she is being a bad friend.  Your pointing it out does not help that at all.  Your ticket is general admission, and that goes for what you get to know and how she is expected to support you. 

9. Know Yourself.  How can you best support your friend?  Frankly, this isn't the time to idealize how well you may be able to handle something like a friend's diagnosis.  Its a time to be honest about what you can and are willing to do.  I had a friend who told me her way of helping is always to provide food.  So she would frequently just run up to the door and quickly hand off some amazing homemade items for me to freeze.  It was her strength and she knew how to use it help me.  If you are not someone who can physically be with a person who is struggling, that is okay.  Take an honest assessment of what you can do and offer to support your friend in that capacity.  The worst thing you can do is over promise and fail to deliver.  I promise you that.

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Here's the thing - illness will never be easy for anyone.  Its scary and uncomfortable and sinks us all into the great unknown.  And no one likes being there.  No one. 

So if I had to give you just one thing to do for someone in this space, it would be this - remind them that they are not alone.  In whatever way works for you.  Repeat until the light reemerges.   

They may not always feel that way.  They may not always believe you.

But its the best thing you can do.