Autoimmune Disease Support Group

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Creativity and Joy

"Unused creativity is not benign, it metastasizes, it turns into grief, rage, judgment, sorrow and shame." (Dr. Brene Brown, SuperSoulSunday, OWN network, 9/15/13).  Being extremely sick, especially for those who suffer for months to years without a remission, can rob you of creativity and joy!

It's no wonder we can be viewed (at times) as angry or cranky!

Living with a chronic illness such as autoimmune disease, (or CFIDS or Fibromyalgia), is no picnic. And yet, how many people view disabled persons as living a life of leisure?  They may have some grand illusion of one sitting quietly and enjoying all of their current hobbies followed by an afternoon meal with the "ladies who lunch". 

Obviously this could not be farther from the truth. 

When the pain and fatigue of chronic illness begin to take over, the first things to go are anything remotely linked to creativity or joy.  There are no more picnics, no hiking, no bike riding, no amusement parks, no trips to the beach, in my case, no sun of any kind until it is literally threatening to set!

If you are able to work, all of your downtime is used in one of two ways.  First, any down time is used for the sole purpose of resting in order to get to the job that you are trying not to lose.  And second, many... many... many doctors appointments.  (And the sicker you are, the more specialists you need to see!)  People who are not ill get to leave their job at 5pm.  The rest of the evening is theirs!  Not for us, no.  For us, leaving work is followed (at least one day per week) by a trip to some far away doctor (the more specialized the area of medicine, the farther away the doctor who accepts your medical plan will be). 

The Friday 5 o'clock whistle does not mean the same thing to a person struggling with illness and trying to work.  These fine folks fall asleep at 8:00 pm during the work week, and therefore, any and all house work must be squeezed into the weekend.  All of the laundry, the weekly trip to the grocery, running errands, these things are necessary but also drain us of every last ounce of energy.

There won't be a trip to NY city for the play that everyone else is going to, there won't be the night of dancing at the club, or even a trip to Great-Aunt Gert's in Yonkers for her 90th birthday bash.  There just isn't any energy for anything other than absolute essentials. Work?  Check.  Clean underwear, check.  Clean sweater, no.

So when your body finally gives out, and you are either thrown into the hospital or calling out sick more than you are showing up for work, well then disability is probably in your near future.

Once out on disability, you may require months, or even years before feeling well enough to attend Cousin Betsy's fourth baby's Christening.  Now, notice I did not say GO to the Christening, I said feel well enough to attend.  There is a difference!  We all have to go to family functions that we really don't feel well enough to attend, but it can be politically dicey to refuse certain invitations.  (Just sayin').  Of course when you have a fever, or are too weak to get dressed, of course you cannot go.  But there are those "gray area" days where your Crap-o-Meter is at a 7/10 but you swallow a pain pill and some Tylenol and pray.  You lay down in a cool room after your shower.  You find some creative (yet safe) way of propping up the hair dryer because it's to heavy for you to lift over your head, followed by twenty more minutes of laying down in the cool room.  Then you find something to wear and get dressed, followed by another twenty minutes of laying in the cool room.  And then some last minute touches which will prevent anyone from knowing just how crappy you actually feel (mom always said "Lipstick and earrings, if nothing else, these two things will get you out in public" - God rest Wilma's soul!)

There is little to no joy in this lifestyle.  Even when you manage to get to that Christening, the brain fog can be so bad that you find yourself engaging in mindless nodding with an occasional grumble of "uh-huh" or "yeah..." at appropriate times.  I've even been in a room of my most favorite people on the planet, only to find myself nodding and smiling, all the while thinking, "oh my GOD I'm so exhausted".  My showing up and enjoying myself were often mutually exclusive.

So the quote from Dr. Brown about unused creativity hit home with me in a wild way.  It is only now, in the fourth month of my new treatment (Go Xeljanz) that I find myself adding things into my life that bring me joy.  In July I received my very own copy of CDs that provide me with very basic singing lessons.  But the amount of joy that this gives me to tap into my spirit again was worth far more than the $99 + shipping and handling!  In August I took Oprah and Deepok Chopra's 21-day meditation challenge and that brought me peace.  This month, I took Restorative Yoga at my Cousin Mary's Yoga Studio in Hackettstown which brought me a small bit of enlightenment.  (and Yes I could do every pose!  All poses are supported with blankets and bolsters...  it's more about the mind-body connection, breathing and silence.  If I can do it, almost anyone can!) 

Being as sick as I was deprived me of so many avenues for joy. Now that I am improving, I am making the conscious decision to bring more joy into my life. 

Whatever your level of wellness, how can you go about bringing more joy into your life?

First, make a list of all the things that brought you joy in the past.  Go back!  Waaaaay back!  When I was a child I never walked anywhere!  I skipped!  Rode a bike.  Pogo sticked my way up and down the block!  And singing.  After school I actually sang about my entire day!  No melody, just singsonging my entire day! Swinging on swings.  You get the idea.  Not that you can (or want to) do all of those things, but go over in your mind each age and what brought you joy.  Which friends made you laugh?  What smells or sounds went along with those memories?

Now, find a way to recreate some joy within the limitations you have to work with at this point in your life.

I used to go out to dance clubs in my early twenties.  Nothing made me happier than going out to dance (at that stage of my life).  Now I may not be able to dance more than one song without sweating to the point that onlookers feel the need to dial 9-1-1, but how can I get the joy that those experiences brought me?  I have to look deeper into it.  Where specifically did the joy come from?  First and foremost it was spending time with my best girlfriend (since we were 4!).  So that relationship brought me joy.  I also got a lot of joy out of the "Primping Ritual" (the two hours just prior to going out where we would shower, paint our nails, do our hair and makeup).  I am a girly-girl at heart and while I don't get the chance to do it very often, I love the "primping".  So these days, whenever I do have the opportunity to go to a wedding or (cough-cough) class reunion, I allow myself plenty of time to partake in the "Primping Ritual" (which is now a s-e-v-e-r-a-l hour process with my built-in breaks to lay down in the cool room! 

Now the music, that is a no-brainer.  I may be decades too old to go hang out in a night club, but I can crank up the music at a red light!  Or in the shower!  When I was at my sickest, it didn't even occur to me to put music on in the shower!  And I was too sick to drive myself anywhere!  When my husband drives he's far too chatty to even put the radio on (I can't process the music and talking at the same time and find I just get agitated).  So what else brought me joy from those days at the Club?  The vibe!  The excitement and energy of the crowd! 

Well, you see where I'm going with all of this.

Creativity and Joy.  Dr. Brown lumps them together in her statement.  I believe they are equally important to our emotional well being.  It wasn't until recently that I even considered creativity as an important piece of myself. 

Each year I plan a small Christmas party (fighting through the urge to write "Holiday party" I will own and honor my Christian faith here).  At said Christmas party I make a craft which is handed out at the end as a parting gift.  I used to push myself and work on it the week before the party, however, wisdom has shown me that I enjoy doing it far more about six weeks ahead without the pressure.  Each year I choose something different.  Last year I made hand-milled soaps.  I got so much joy from making them, and even more from giving them to my friends.  Each batch of soap was different.  I got to choose colors and scents.  I made double layer soaps, some were round, others were shapes.  It was a very creative process.  I've been having the party for 25 years.  This past year I finally realized that my favorite part of the party was the craft. 

I enjoy deciding on the craft.  I love going to the craft store!  I get excited.  There is definitely something to being creative and a direct link to JOY!

At the last group meeting we incorporated being creative in the second half of the group meeting.  We did a collaborative art project.  We had a giant easel of paper.  Each person chose a different color magic marker.  The person with the easel would make one line on the page and then pass the easel to their left.  Around and around the giant easel went while we discussed small ways in which we could bring more joy into our lives even though we are living with a chronic illness.

At the end of the meeting I held up the big easel for all of the group members to take in the beautiful, colorful, abstract art that we had created together as a group.  It was beautiful!

If I have one take away from that meeting and this blog post, it would be this:

Don't put joy on a shelf until you feel better like I did.  It's your birthright to have joy!  Grab it by the sack and shake it for all it's worth! (yes, I used the word sack!) 

Joy is not only for you.  Your family and friends will notice that you are happier.  And happy people are much more enjoyable to be around!  We may be sick, but we can still be someone that others seek out to spend time with.

Until the next group meeting,

Be Joyous!