Saturday, May 2, 2015

When shit gets terminal

*I am sure y'all can understand my need to use a good old swear word in the title as well as throughout this blog post.  Thank you.  Sometimes nothing else will do.  See below for more information.

The past few years I have become versed in the crappy language that is terminal illness.  Not in a medical way but in an emotional way.  In a friend, daughter, minister, cry-partner, swear repeater, sort of way.


Shit got terminal with cancer and I lost a friend who spent the last year of his life teaching teenagers about Jesus' healing ministries, redeeming love, and grace... with conviction and honesty.

Shit got terminal with ALS and my co-worker and soul sarcasm sister warrior-ed her way through three and a half years of growing a ministry while her body declined.

Shit got terminal who knows how many years ago when Alzheimer's started affecting my mom's brain and I knew it and the fight for diagnosis came to light last July with the phone call that solidified that before I have two kids in elementary school my mom will not know who I am.

There's my street cred.  Three families, each of us linked.  Each having a minister (ordained and lay) as part of the immediate circle.  They are my people.  We have each received unfathomable grace and kindness from others and have also experienced things through these journeys that make you want to facepalm and press the rewind button for others.  It has mostly been the grace and kindness.  That grace and kindness has been the only thing to get me out of bed and put on pants with buttons and keep being a person on the hard days.  It has made me know I can carry on through this journey where I don't get to hope for a different outcome because there is no other outcome.  Terminal: predicted to lead to death, especially slowly; incurable.

That slowly part, that's the worst sometimes... and that's why we need you to be there for us.  We know it's scary and so easy to do stupid crap... so here is some help.

First off, if it's you getting a diagnosis or your person (spouse, parent, kid) you go ahead and do whatever the hell you want This list is NOT for you.  This list is for everyone else around you.

Whatever you need to do is RIGHT.

Just go ahead and pass this on to those that need some guidance.

So what are you supposed to do when shit gets terminal?  
So far.. here is I've learned...

1.  First off... READ THIS it is by far the best advice I have ever read about not saying dumb crap.  My friend Jenn sent it around soon after her diagnosis of ALS.  We referred to if often throughout the next three years.  Jenn loved to swear, it just made her feel better (see #2) and so we substituted the word shit for dump.  Shit out.  At her funeral I told her husband I was going to make him a sign for the receiving line that read..."DON'T SHIT ON ME".

2.  Follow their lead.  And LISTEN.  Jenn needed her friends to echo a good old 'this is shit' with her when ALS took another precious thing from her life.  When she had to buy a stupid mini-van for her stupid wheelchair (she detested mini-vans) we used all. the. swears.  multiple times.  Because that is what she needed.  When Michael, my friend and a high school Sunday School teacher was dying of cancer he got a lesson on miraculous healing in the rotation of lessons and I asked him if he was 'sure' he wanted to teach it, he made it clear that he had this and don't try to protect him from what God was doing.  After that, when he somehow got ALL the healing stories (by total chance that is only God being God) I just let it be and he changed those kids forever.  When someone who is not being healed physically by God is teaching you about God's healing-- shit gets real.  I needed to follow Michael's lead.

3.  Let their caregivers be their caregivers.  Be what you were the day before they were diagnosed: best friend, workout buddy, bitchy sister-in-law, fantasy football competitor, awkward joke making co-worker.  Just because someone gets a diagnosis does not give the world free reign to enter their space, world, home, and life.  It also doesn't mean they don't still need to laugh, work-out, and hate their in-laws... give them that!  They still have boundaries.  There may be things your friend needs that they ask for help with that is totally appropriate for you to be a part of because of what you are.  Jenn and I were girlfriends so I helped her into the bathroom sometimes when her mobility was changing.  I also go to the bathroom with my girlfriends who don't have ALS.  It's a thing we women do.  Hello-- we need a place to talk about our husbands where they can't hear us!  There are lots of details about having a terminal illness that mean things will change and that person will need help with things... if you are the person they want to help them, they will ask you.  Give them space and privacy and grace.

4.  Stop googling their illness.  You get to do it one time.  You do not get to tell them about anything you read, they have already out-googled you anyway.

5.  Don't ask 'what can I do?' just do what you do.  Two weeks after my mom was diagnosed with the big ALZ one of my dearest friends called me.  She was one of the first people I called after finding out the news and she did all the right friend things, she had all the comforting words and was amazing but I could not tell you what she said DOD (day of diagnosis) but that follow up call I will never forget, she called to tell me that she had just pre-read the top Alzheimer's books for me and to get a pen and she would tell me which I should read now and which I should probably wait a bit to read because they would probably be too much for where I was at in my head.  She is a researcher.  She went straight to her gifts and her knowledge of my emotional-basketcaseness.  SHE FREAKING READ MULTIPLE BOOKS ON ALZHEIMER'S FOR ME.  It was exactly what I needed.  She was able to get on my case when I didn't read what I should and then support me when I ugly cried and sent her nasty text messages all the way through Still Alice.  When you ask 'what can I do?' we don't know how to respond.  Usually you already have an idea... if it's not boundary breaking, go ahead and  do it.

6.  Food is not always the answer. (this one is just practical, sorry) Meal are a blessing and a curse.  Always always ask a family if they want food.  If they need meals put together have an organized method of getting people signed up (Meal Train or Take Them a Meal) Have a cooler at the front door to drop the meal in and leave -- don't have people stop to talk. It seriously makes it hard to have any kind of functioning life when people are trying to talk to you (probably about dying) while bringing you pasta and cake.

7.  Don't make it all about them.  There is this anxiety that once someone has a terminal diagnosis we can't share our problems with them because they are so minuscule in comparison to their 'fate'.  Reality is... we are all terminal.  It's isolating to suddenly be told your life will be shorter than you had probably thought and then all your friends stop talking to you about their lives.  Without mutual sharing there is no way a relationship can grow.  By 'protecting' the person you love and not telling them your shit you are actually taking away more of their life... you are taking away meaningful relationships of mutual give and take.  You are not allowing them to care for you.  They have no control over their own illness but they do have the ability to do lots of things, most of all, love and love well.  By hiding your own problems you are treating them as if they are already dead.  You are cutting their life shorter than it is already being cut.  One of the greatest gifts Jenn gave me was a letter she wrote my mom two weeks before she died.  I haven't given it to my mom yet, I may never, I think Jenn knew that.  I know she actually wrote it for me.  She sent it to me with my mom's name as the recipient and mine and my husband and kid's names in it but she also published it on her blog.  Her friendship and love changed me, she helped me through my worst shit even when she was days away form her own death.  

8.  If you are close enough, don't be afraid to go there.  Physically and emotionally.  Sometimes death is not pretty.  Most of the time it is beautiful.  If your person wants to see you, see them.  You won't regret going but you will always regret not going.  That's the physical.  If you have the emotional relationship ask the hard questions about the kids, the spouse, the funeral.  Not the ones that are outside of your purview but the ones that are.  I have found (I hate at 30 years old I have something 'I say' to the people I love dying before they should ) that "What do you want/need me to do for _________?" They have thought about it.  If they have something, they will tell you.

9.  Their closest people will never heal.  I was very scared after Michael died to say the wrong thing to his three young children.  His wife told me something that has changed me forever, "we are never not thinking of him, so if you bring him up, you are not opening up a closed wound."  I have talked to so many people about this.  Friends who lost their moms 20+ years ago agree whole-heartedly.  When the 'after' comes, when the ugly crying funeral ends and the meals have stopped and everyone else's life goes back to normal, if you are very close with the person who died or that family, keep talking about them.  Keep checking in.  Holidays are going to just blow for a (possibly long) while.  Think about how you can recognize that.  Being thoughtful, sending a card, recognizing that you recognize there is a hole, means something.

10.  Noun: A point of connection(Did you see that part of the definition way down there at the bottom, it's the science part so I would normally ignore it)  That's the real kicker with terminal illness, it brings out the darn most hard-core amazing in people.  The community that comes to be in the midst of a terminal illness is earth-shatteringly beautiful at times.  Brutiful as my bestie Glennon Doyle would say.  There is growth and bonding and faith that grows out of the loss of one of our own.  This does not mean that for one small second you are ever allowed to say, "this is God's plan".  God can certainly make a flower grow up out of a pile of shit but it's still a pile of shit.  ALS, cancer, graduations missing a parent, spouses who planned on forever burying their beloved before they have even received the AARP card... all those things are not from God.  God does some amazing stuff with the crap that happens and sometimes in the midst of the hard we have to search for the good things God is giving us to sustain us.  Connection, support, love, those are things to cling to.  Stay away from false promises of healing and words that often hurt more than you could understand like, "this was God's plan" or "they are in a better place" and sweet baby Jesus please don't say to a family after their loved one has died, "at least now you can move on".  That makes me want to punch you... in the most loving minister way that I know how.  So maybe just button up your lip and figure out how to best connect with love and support.  You don't need to apply a bandaid to an amputated limb... it won't help.

Also, I'm so sorry.  I'm sorry someone you love is dying before they are old and crotchety and can tell stories to their grandkids.  And if it's you, I'm sorry you are not going to be old and crotchety and tell stories to your grandkids.

The flower that has grown from the shit for me... I have no doubt that there is something else on the other side of this.  I have no words to tell you how I know this but spend some quality time with someone as they near the end of their earthly life... they will show you.