What is summer to you?

photo (10) water sunset self-portrait sunset boatSummer has a way of sliding over me like my favorite t-shirt. It takes a little while for me to settle into my summer stride.  Maybe you relate. You know, first I have to fight off the nagging feeling that I should use my vacation to be productive, that I should EARN my vacation by a lot of work.  But then I went camping recently (and totally lacking anything productive) and suddenly it felt real.  There was a precise moment (sitting in the camp chair, feet on the picnic bench, joking about our state park neighbors) when I actually said, “This feels like summer.”

I have a long and meaningful relationship with this season.  I went to camp as a kid and then worked at a camp for 19 years.  I GET summer.  It is a magical time for me. Summer isn’t about weather for me. It is about 5 simple things.  What about you?

1) Being outside.  Getting my nature on.  Wandering into the woods or out on a dock and enjoying not being surrounded by people.  Having the view–the extraordinary view–be enough.  Be MORE than enough.

2) Relaxing.  Not I’ve got 15 minutes to sit down relaxing. I’m talking FORGETTING YOU HAVE A JOB relaxing.  This is the moment where your biggest decision is Should I make more tea or finish off the Doritos first?  It isn’t necessarily laziness–though Lord knows that’s an art form–it is about enjoying the pace of right now.  Nowhere to be.

3) Camping.  Now I know this might be sketchy territory for some folks, but hear me out.  Camping (or hiking even) gets you out of your space.  Gets you out of your home.  Gets you out of your parking spot.  It makes you small in the world.  Bye bye TV.  Hello, JUST SIT THERE.  Watch the way the fire licks the sides of the log you just turned over.  Stare up and actually notice that there are stars in the sky.  Stare long enough that you can’t count them.  Sip a cup of tea, tilt back in the chair and balance a book on your knee.  A BOOK.  Remember those? Heaven.

4) Laughter, preferably about something ridiculous and unimportant.  My friend and I, while polishing off cheese quesadillas, killed a good 1/2 hour discussing whether we could buy green vests and pretend to be the volunteer campground hosts.  We talked about what our duties would be and how we would hide the evidence if the real hosts came around in their golf carts.

5)  Being with kindred spirits.  My favorite people on the planet are kindred spirits.  They know me, they get me, they have no desire to change me, they banter, you get the idea.  True summer to me is saying to them,”I want to spend time with you” and their response is “Me too.”

What about you?  What makes your summer magical?

6 Things Every Extrovert Secretly Has To Deal With

Great blog post about the emotional energy involved in being an extrovert. I would also add that people ask, “What’s wrong?” if you are quiet and that people assume that extroverts have an endless supply of energy for any situation (support, humor etc.) This is a great piece with a lot of truth. Most of the time I love being an extrovert, being able to draw people out, reach out to others in lots of situations, to make them laugh and to encourage conversation, but every time I do it, it takes emotional energy and bravery to step up to the plate so to speak.

As an extrovert, just because I can reach out, doesn’t mean it is effortless.
It takes courage to reach out beyond ourselves.

The Ten Essentials…a survival guide

The Essentials

Image

As a former backpack trip leader, I’d go over the packing list with my teen participants before we headed out into the Olympic National Park.  One of the things we would go over was The Ten Essentials.  These are things that are generally recognized as the must haves of the camping/hiking world such as a knife, compass, first aid kit and extra food.

It is how you survive if the going gets rough.

When I think about The Ten Essentials of my regular life—my life that has integrated with my healthcare—I can think of a different list of must haves. 

1. Warm Blanket– These are available in the hospital during treatments.  The warm blanket wraps up anything that is freaking you out, stressing you out, pissing you off in a comforting sheet of warmth.  It is without a doubt the most nurturing object in a hospital.

2.  Nurses- Whether it is their attentive care or the smart ass remark they make, nurses are the human version of the warm blanket.

3.  A sense of humor-some of the things that will happen with your doctors will be hilarious.  Don’t miss that because you are so busy “being sick” that you can’t laugh at the insanity that you life has become.

4.  Friends who remember– These are the little things.  My best friend tries very hard to remember when my doctor appointments or infusions are.  She doesn’t come to these with me, but she tries to text and check-in.  Friends who remember are essential while you are trying to act like visiting the hospital this often is “normal.”  Which it is not.

5.  Perspective– Remember that other people often have it worse than you do.

6.  Permission-Remember that even though #5 is true, that doesn’t make your suffering less valid.  Pain is pain.  Struggle is struggle.  You are allowed to have a crappy day, even if someone else had a crappier one.

7.  Music-Have something to listen to that makes you want to a) sing along and/or b)dance.  I like musicals, but whatever revs your engine.

8.  “I’d still like you” people–  You should have people who like you even if you are venting, ranting, swearing and storming.  These are the people who will not judge you when you pitch a fit.  They will be glad you called them.  They will not make you feel like you need to say, “Sorry I went off about that.”

9.  Something good to drink-Coke Slurpee, coffee, tea, wine, whatever.  Have something you enjoy.  This drink should be the warm blanket of the beverage world.

10. A flashlight-cause that’s always a good idea.

What would’ve helped

Image

No one will ever tell you how to cope with getting a serious illness, not even your doctors.  You think they will know, but they won’t.  It is unrealistic to think they would.  Remember, they went to medical school, not social work school.  But the poor souls are saddled with you and me and whatever illness we bring to the exam table.  When they ask how you are feeling, you may be tempted to answer, “Isolated and wallowing in an identity crisis.”  Resist this urge.  This is not their area of expertise.   For all you know, they’re wallowing too.

They do want to help though.  They want to give you the drug or the surgery or whatever and figure out the problem so that you won’t have to visit so often or maybe never again.  They want to figure it out.  But it isn’t always that easy because sometimes you are both trying to figure out two totally different things.

They will give you medication to try to solve or treat certain problems.  Those drugs will have stickers on the bottles to stop you from “taking with milk” or “don’t operate heavy machinery.”  These are helpful tips.  They are the “how to’s” of drugs.

I wish everything else was that simple.

I wish illness came with warning stickers.  Do’s and don’ts.  The kind of things that go beyond the physical symptom to the day-to-day experience of living with a disease.  I wish I knew what to do when life flips upside down.  In all of my appointments, tests, emails with doctors, exams, bloodwork, I wish I could have had a guide.

Yes, a guide.

A truth teller.

A sage.

Someone who could roll their eyes at you, smack on some gum and put their arm around you while calling you “Hon” on the rough days.  I think my sage would be older than me and a cross between a Flo from the tv show Alice (sassy waitress) and Tyne Daily when she played the insightful, seen it  and been there mom on Judging Amy.   My guide would be part Wise Woman and part Salty Broad.

I longed for someone to tell me how to handle all of this, to make sense of things when everything was out of my control.  A guide could have helped me to know how to ingest everything from less than satisfying doctor’s appointments to the waves of emotion that hit when I was exhausted from, well, everything.  A guide could have helped me to see what friends were helpful and what friends were not—rather than having me run it over and over again in my brain trying to make sense of it.  A guide could have helped me navigate the waters of identity that get so muddied up when suddenly your old life is inaccessible and you have this new, unpleasant and unwanted life.  A guide wouldn’t have been threatened by my tantrums or by my tears.  They would have known It’s all a part of the process hun.

I imagine my guide’s name would have been Pearl  Something practical and real.  Pearl won’t bullshit you.  Pearl will know how it is and won’t be afraid to tell you when to pull your head out of your ass and deal.  Pearl also would know that Sometimes honey, you just need to mourn the life you left.  She would tell me when my brain was spinning in appointments or after—which is usually when it spins—when I am finally wrapping my head around whatever new thing the doctors want to do.  New equals scary.  Even if it is not.  New is uncharted territory.  New requires adjustment.  Pearl would remind my brain when New freaked me out that we have been here before.  New fades and then it is ok.

And even if it isn’ t ok, then it is familiar.

What I know…

If you have never had a serious or chronic illness you think you know what it will be like.  You visualize someone—frail and emaciated with thinning hair—nervously checking their watch to see if they need to take medication.  These are the people you feel bad for.  People whose whole lives have been reduced to repetitive trips to the doctor and a litany of side effects.   And you think to yourself—with some guilt—I’m so glad I don’t have that.  Someone who has a serious illness—you think—must face the fact that their life is broken.

Pyoderma Gangrenosum.  8 glorious syllables that sound like a Harry Potter spell. Say it slowly with me with a flourish of the wand as each syllable pulls through the air.  Pyo….derma….Gang—-ren…..o…sum!  It casts an incantation that causes the target—36 year old me—to break out in painful, blood-filled boils.  Yes.  BOILS.  It’s an auto-immune disease that affects 1 in 100,000 people—it’s rare.  I also have it in my lungs.  Uber-rare. Freakishly rare.  The doctor who called it “exotic” made me like her immediately. I am many things. Exotic is not one of them.

In all of this insanity, as you embrace what it is like to have your body be totally out of your control, you might think it will suck.

And it will.  Oh boy, will it suck.  Like a big o’l Dyson vacuum it will suck.  There will be tears and exhaustion, anger and embarrassment, isolation and fear, surgeries, drugs, awkwardness, and the feeling that things will never go back to the way things were before.  There will be a mourning of the loss of you.

But here is the thing no one tells you.  The secret is that it will not suck all of the time.

You think it will.  But it won’t.

Some of the time it will be incredible.