Coping with a Disability: Real Strategies

I am not an expert or a therapist.  I don't have all of the answers.  Some days, I don't have any answers at all.  That said, I believe that connecting with one another will enrich our lives.  Together, we are stronger than one.  I muddle through as best I can.  And knowing I'm not alone makes all the difference.  So, my coping strategies: Token Gestures

Yes, they're small, but they can work.  The yummy lotion right before bedtime that calms and relaxes, the lovely smelling candle that brightens the house, the bookmark that says hope . . . the little things spread throughout the house remind me that there is a world outside my world.  A small token item can shift my mindset.  Being deliberate about scents and home can have a deeper impact that we might assume on the surface.  Our home can feel like a reflection of ourselves.  The little things make a big difference.

And I'm going down a bit of a tangled path here because one of my major challenges is caring for my space.  I don't have the energy to do all of the chores that need doing.  I often have to ask myself, what's more important: my health or getting things done? And the answer isn't always as easy you might think.

I go back to the little things.  Yes, my daughter's toys may be a mess, but my computer-desk is nice and tidy.  Which ties into two of my other strategies, redefining success and enjoying the little things.

The token gestures, the candles, the novels, the music, the tangible small things can make the world a kinder, more beautiful place.  And that's important.  Especially important when you are contending with daily frustration, limitations, and possible pain.  Reward yourself.  You work hard every single day.  A little gift is well-deserved.

Stay Invested

Some days it is so much easier to stay home, turn off the phone, ignore the email, and hunker down.  Especially when it feels empty to say everything is fine, or I'm great, or even, I'm hanging in there.  Withdrawing can feel a lot easier.  After all, if no one is noticing, there is no one to disappoint, right?

The short term relief of withdrawal doesn't last long.  We all need downtime and quiet time.  That isn't what I'm saying here.  What matters is investing in life.  In family.  In the future.  Even when the future is uncertain.  I can plan to go on a cruise one day, look forward to that cruise, regardless of my abilities.  I can gather with family (though be careful if your family is not supportive).  There are so many things that we can do, and an important thing to remember is that we, the person, not the disability, matters.  People will miss us when we withdraw.  They would rather be involved than be left behind.  Most people will rise up if we give them a chance.  It can be giving the chance that takes a great leap of faith.  But it is so important.

Staying invested is also being invested in the activities that we enjoy.  The hobbies (which fall under inspiration), movies, even sports, look for ways to access the things that you love rather than closing the door on them.  Giving up can be easier than being creative.  But I find that disability inspires some of the most creative thinking in the world.  So go with it and invest in what matters.

Investing in charity, too, is a great support.  We can feel like the greatest charity sometimes, and knowing we can give back, whether it's saving animals, sewing blankets, writing letters, whatever can be done to make the world a better place helps me feel useful.  That can mean a lot.

Enjoy the Little Things

Last week my husband broke a bad-spell by taking us all to ice cream on Sunday evening.  Watching my son run up and down the length of the store and my daughter licking at her dripping chocolate cone shone a different light over my day.  Some things change and some things stay the same.  I can get caught up in the drama, the endless cycles of limitations, loss, frustration and fear.  But little moments of sweetness can sneak in if I let them.  I find that when I snuggle my son, or when I see sunshine through daffodil petals, or the sweep of spring clouds over a true-blue sky.  I need to pay attention or I miss them.  There are certain things that cannot be lost, or taken away.  They are ours, and so much ours we often look right over them as insignificant, like the green grass, or warm sunshine.  If we can live there, in that place of appreciation, each day is laden with gifts.  Ours for the taking.  And they can be as simple as a fresh breeze, a perfect song, a chocolate-chip cookie.  Our cup can be more than half-full.  It can overflow with generosity.

Inspire!

What is inspiration?  For me, writing inspires me.  Photographs.  Crafts.  Good food.  For me, projects make days interesting, planning them, making them, planning more :).  They may challenge me.  As with my adventures with this blog and podcast.  But they also enrich me.  They lift me out of the thinking that cycles around managing my life and my condition.  They distract me.  Discovering photography with greater depth last summer has given me hours of fun and curious-distraction.  And our lives need the enriching, exciting possibility for  building new-ness, discovering new adventures.  We can be held back by fear (I worry about dropping that camera) but the rewards are worth it.

Now the healthy side of challenging yourself must be tempered with an acceptance of reality.  I am not going to climb Everest as my inspiration.  But perhaps I could manage to see it one day :).  That in itself would be an exciting adventure.

Inspiration is highly individual and unique.  It moves us out of survival mode and into a place of wholeness.

Support

Support can be the foundation.  It can also be my biggest challenge.  I have so many offers of help.  And yet, I cannot answer a single on with a concrete- this is what I need.  Part of it is that our society rewards the strong-hero that takes on all obstacles without a thought for asking for help.  Asking for help can sometimes feel like complaining, or a failure.  It's important for me to remember how much is my perspective and how much is true.  I often take on too much.  Because I don't know how to advocate for myself.  It's a growth area for me :)

One support I got last year was finally admitting I needed help cleaning the house.  We connected with our local independent living resource office, FREED, and they connected us with a wonderful woman who helps with chores around the house.  The resources may exist when we are willing to look for them.

A strong support for me is on the internet.  If you have a rare condition, like mine, you may need to internet to connect with others sharing your challenges.  I belong to three support groups through yahoo health groups.  There are also websites, though the information can be scary and contradictory at times.  So you have to take it all with a sense of yourself and knowing not everyone shares the same story.  I have made great friends through online support groups.  You can connect with them by using simple searches most of the time.

Redefine Success

Another challenge for me.  Awhile ago I decided, I must shift my thinking.  I must stop measuring my day what I accomplish.  Instead, I must measure how I feel.  Nice idea, not easy to follow through on every day.  But it was a step in the right direction.  No one can create the world for us.  Only we know what we feel and what we need to feel whole and healthy and happy.  We have to let go of other people's decisions about our best life and commit to our own vision for a best life.  It may mean simplifying, it may mean letting the laundry sit for a day or two, it may mean wearing clunky shoes with skirts, whatever it means, live with success.  Like I said before, a neat computer table is success for me.  My daughter's toys . . . I'll get to them.  Less can often be more.  Be aware of your own vision of success and don't measure up against an idealized story that may be completely unrealistic for your world.

The Future

Disability is not easy.  Many people faced with disability spiral into depression, substance abuse, or worse.  We must recreate a story of disability that honors creativity, empowerment, and unexpected rewards so that disability will no longer feel like a walk into a dark, tangled forest alone.  The things that make our days easier (and even fun) are exactly what makes any life easy and fun.  We have the power.  Let's live the story.