Something that I find really helped me for the first year after I lost function in my leg was to create a photo and word journal each day that chronicled what I was up to.
For example, a lot of my days were just pictures of one of my dogs sleeping happily at my bedside and a note that I did yoga. That is a happy day. Maybe you didn't sweep the floors, take out the garbage, clean the bathroom, close a deal at work, write up a contract, and help a child learn to read. So what? Learn to take joy in the joyful things that are with you and then begin to expand them.
Make a list of things that gave you a feeling of joy and accomplishment prior to your injury or illness. This is going to be a tear jerker. Do it anyway, you'll see why. Write down every single thing that made you feel like your true self and then put a check next to the things that you are still able to do. You'll be surprised at how many of those check marks there are and how much you thought was closed off to you but really isn't.
For example, golfing was something that brought me joy before and I thought that it would be off limits to me. In the rural logging town where I grew up, golf was not an elitist sport. People went to the gold course in jean shorts. It was just another wonderful way to spend the day outdoors, enjoying nature and the people you love.
As long as I can remember, I loved riding in the golf cart beside my grandpa or my dad or both. My mom's dad, my Grandpa Bob, even went to his tool shop and make a tiny set of clubs for me by cutting down the clubs and replacing them with little grips for my 3 year old hands. I took those three tiny clubs all around the yards of my family and friends, hitting whiffle balls and pine cones, climbing deep into the aspen grove forest on my grandfather's property to practice my sport in the solitary, beautifully quiet rushing of the aspen leaves. I felt safe and strong and loved and capable.
Later I took that feeling with me throughout my teens and adult life, being offered a scholarship in college and taking a job teaching kids at a golf camp close to my home in Portland years later. I loved sharing that perfect moment with others, that swoosh...click and an arching shot through the sky, then the soft thump of the grooved ball landing on soft, aerated grass and soil.
When my leg lost most of it's function, when my IBD began to rage and tear my insides apart, I thought that this sport I loved was lost to me. I smelled the freshly cut grass in the spring and shoved my face into my pillow, tears streaming down into the soft cotton pillowcase. The Hannah I knew, the strong woman who defied gender roles and loved and excelled at a sport geared towards men, the Hannah who loved the feeling of finding just the right club, making solid contact for a perfect shot, the tensing of my body as I waited to see it land, roll, jump softly over the rim and sink, perfectly for a Birdie, the excitement rushing through my body and the arching of my back as I raised my hands in the air, victorious, eyes fixed on a blue sky above.
I cry for her now even. These memories are hard to recall. That life, that power, is hard to think about today as I lay in bed. But it doesn't have to be that way. There are parts of what I love that are still available and open to me. All is not lost. Simply changed.
So later I went back to my list and truly reevaluated. In fact, yes, carrying my golf bag and walking 18 holes and swinging a driver 18 times and digging myself out of bunkers was not available to me. True. But I could definitely take my putter out and practice my short game for a few precious minutes until my leg filled with fluid and then just rest.
That doesn't sound like a lot but the act of driving to the course, rolling down my window, smelling the the freshly cut grass, hearing the slicing sound of clubs making contact, pulling on my favorite ball cap, grabbing a club and walking out on to the putting greens and sinking a few shots was music.
In the end, it might not have been the entire round of 18 that I loved but the visceral elements of the game; the feeling of it. That was what I loved as a child, my first reason for loving the game. And that is still mine for the taking. I just wasn't taking it.
Go out, make your lists. Take what is yours. Live your life as fully as you can. Things have changed. Change with them. Transform and grow and learn about yourself and what you loved all along. Then connect with that love and live freely again.
One thing to be careful of when you're approaching this brave process is that sometimes people will encourage you to “Just get out there and be around people,” aka in my case, ride around in a golf cart with people who had once been my strongest competitors and watch them play the game. Wow. If socializing and riding around was the part of the activity you loved, then maybe this is a good idea, but if really participating and testing yourself learning and growing and maybe even competing was what you loved, then riding around or sitting around watching others do the thing you loved is going to tear your heart out and maybe discourage you from coming back at all.
The key is to really think about the elements of your joyful activities that made them joyful to you. For example, if taking classes to stay current on your career goals was a joyful activity and now you're unable to walk around campus or afford to pay tuition due to heavy medical bills, think about ways that you can get that feeling of learning and staying current. Maybe you can take a MOOC or Massive Online Open Course offered for free online by universities like Harvard and MIT. Perhaps you can join a lunch group of people in your career that get together to brainstorm goals and share ideas and mentorship.
If sewing was one of your joy activities and now rheumatoid arthritis prevents you from doing this, then think about what it was about sewing that you loved. Maybe you can still go to sewing circles and teach younger people how to do your art, maybe you can get into designing patterns and share those with your friends, then watch your ideas come to life. Maybe there are modified machines. Just find out what you loved about your joy activities and start bringing that joy back into your life.
This isn't to say that there won't be a feeling of loss or that you won't miss your “old self.” But it is to say that you can begin to make peace with the now, love yourself, and fill your daily photo/writing journal with accomplishments and joys once again. Document what you're doing each day. Take a picture of it, write down a line about it. Give yourself credit for it and then look through that journal when times are tough. Or even when times are good! Fill yourself up with even more joy at your accomplishments.
One last thing to remember; don't rush it. Especially if you were a Type A driven person prior to your illness, it can feel inconceivable to “take it easy” or “just relax.” There's nothing relaxing about feeling that your life is falling apart or slipping away from you. Acknowledge that, nod to it, and let it go. Good things come to those who wait. Do what you're able to do right now, listen to your body, listen to your doctors, take things slowly and allow yourself to say, “That was enough for today.” Then believe it. You are enough. You are here and you are already enough.
Lots of Love,
Best of luck with your Joy Journals. I hope you grow to see what a wonderful life you have already, even in the pain and struggle. There is always a glimmer of joy. Capture it!