Feb 082011
 

Migraine Monster #28, from excellent artist and blogger Migraine Chick

I have been on disability for the past four years.  My last job was through the federal government, which has its own disability safety net — basically, if health problems render a federal employee unable to work for an extended period, the government provides a fraction of her former salary plus access to health insurance at employee rates.

On its face, this may sound like the best deal ever — money without any requirement to work!??!?  I’ll admit that when I first stopped working, visions of endless craft projects danced through my head.  In fact, Two Wishes began as a craft blog, back before the distractions of engagement, wedding blogging, and baby.  But there are two problems with this supposedly sweet deal.

One, I’m too sick to enjoy it.  The dream projects never happened because my energy was already spent on the basics of daily living, or I had another migraine, or I was too brain-fried to think straight.  And that was before the baby came along — now she claims all available energy, and even those “basics of daily living” take a back seat.  Cooking, cleaning, laundry, showers?  Sometimes, but less often than I care to admit. Less immediate needs?  I’m still working on action items — important action items — from two years ago.  Personal projects?  Never gonna happen.

Two, the constant parade of tasks undone lays waste to my self-esteem.  The failures are generally small, but failure is more common than success.  I try to put a good spin on things, but the fact remains that once I was a functioning human being and now I am not.  Before the government would grant me disability, it had to investigate and declare me unable to do my job.  My supervisors had to swear that I couldn’t meet even the most basic requirements of showing up regularly and producing minimally acceptable work.   I went into that job a high-achieving perfectionist with sterling credentials, and I left a declared incompetent.  And that was before baby, when I was at least vacuuming and bathing regularly! I’m usually blessed with an optimistic outlook, but it’s a struggle to keep up my self-esteem when life is a long series of unmet expectations.

Here is the problem with Unfinished Posts Month — often the posts are unfinished because I have no easy wrap-up for the thoughts.  Nice if I could tie this together into a deep thought or lesson for living, but life isn’t always that neat.  And I’ve never been good at writing conclusions.  So, yeah … long story short: disabling illness can make you feel bad about yourself.  The End.

Dec 102010
 

Think about what makes you different and what you do that lights people up.

Once upon a time, I was a lawyer. (And a damn good one — law review, appellate clerkship, office on the 42nd floor of a Manhattan skyscraper. The whole nine yards.) Now I don’t work at all.

Once upon a time, I traveled the world. Sometimes for years at a time. Now I’m often too exhausted to go out for pizza.

Once upon a time, I offered encouragement, support, food, and gifts to family and friends. Now it’s rare that I manage a yearly birthday card.

Once upon a time, I was active in my faith, in volunteer work, in creative hobbies. Now I’m lucky to get online and write a blog post.

When life changes so dramatically, it’s easy to fall into existential crisis. What can I offer the world when all I can offer is … my existence?

(photo by Punam Bean)

A classmate once called me “the kind of person who holds doors open for people.”  A stereotypical law school alpha male, he didn’t necessarily mean it as a compliment.  But I choose to take it as one; I like being “the kind of person” who makes other people’s lives fractionally easier as we go about our days.

At the same time, I never expect anything from anyone else. When other people offer some small kindness, it’s always a surprise. That touch of surprise means I can thank them and really mean it. The appreciation shines through, and they go about their day feeling better about themselves for having helped.

An Israeli ice cream vendor once told me “You have a … sparkle … And when I look at you, it makes me sparkle too.” The memory is bittersweet because fatigue has dimmed the sparkle. But I still feel it, glimmering, passing from person to person when I smile.

And there you have it: a kind gesture, a thank you, a smile.

 

On days when I measure myself against the world, it doesn’t feel like much.

But it is something.

It is my something.

Dec 082010
 

Glad to see I’m not the only one behind on #reverb10. I love this opportunity to gain back a little blogging mojo, but apparently old procrastination habits die hard…. Anyway, on to Day 6:

What was the last thing you made? What materials did you use? Is there something you want to make, but you need to clear some time for it?

These days, what I make most are ill-fated plans.

Ingredients? Aspirations, optimism, big ideas, limited time, low energy, the occasional knock-down migraine, and a large portion of hope.

Although I’ve been sick for years now, I can never seem to resign myself to the idea of getting nothing done. My brain and my psyche still love to make big plans. I draft epic to-do lists. I research trips and hobbies and events and new ideas. I brain-write articles and blog posts. I dream of my two unwritten books, my three other empty blogs. The plans rarely come to fruition, but I cannot stop making them. I still believe someday these plans will come through — and you never know when till you try, right?

Once upon a time, I played with photos….

What would I like to make? Stuff! Sewing, jewelry, paper, photography — name your craft, I wish I had time for it. Two Wishes was originally a craft blog, way back before the interruptions of wedding and baby. The name itself refers to my wish to have my professional career but also to lead an artistically creative life.

And now I have neither (go figure). But as poor Mr. T will tell you, all the fabric, jewelry supplies, paper, ribbons, film, and fripperies aren’t going anywhere. I dream that they, too, will have their day.

Sep 142010
 

 

I’ve been sick for a month.  In a word: it sucks.

As a chronically ill person (is there a better term for that? Sicko?), I’m used to adjusting life to match my available energy.  Too often, that energy goes to keeping Baby alive and thriving, and there’s nothing left for my own pursuits.  But when I’m especially sick, life slides into a big black hole.  I basically disappear as a person.  And when I return, it is to missed deadlines, apologies, and the clean-up of messes.

I have many things to share with you, including two exciting new blogs.  (Because, when you can’t keep up with ONE blog, why not start two more?!?!!)  But … it might take a while.  Just wanted to know that I’m thinking of you all, from here inside my hole.

Aug 112010
 

I went to BlogHer last weekend.  This was a Very Big Deal — between baby and illness I barely make it through a regular day, so it was daunting to pack up three generations (me, baby, and the ever-patient babysitting Nana), drive us from DC to NYC, schlep around the country’s most exhausting city for four days, and then pack up again and get home.  Overwhelmed by the logistics — not to mention the thought of networking while my self-esteem is at an all-time low — I nearly sold my BlogHer ticket and stayed home.

No question, it was exhausting.  But also: totally rewarding!  Even aside from anything learned at the conference, there were handfuls of memorable moments on Baby’s First Trip to the Big Apple.  She was so proud to be part of a big-girl adventure with Mama and Nana.  And just being out and about in the stomping grounds of my single-gal corporate-ladder days left me feeling more confident than I have in ages.

I battle fatigue and pain every hour of every day.  There are times when I really, really can’t find the resources to do something.  But how often do we miss out on life’s adventures just because of the chains that keep us to our daily grind?  Sometimes, it’s nice to have a little reminder that the scary experiences are usually the ones we end up valuing most.

When have you overcome logistical difficulties — or flat-out fear! — to end up with an amazing experience?

Oct 222009
 

 

Thanks, everyone, for your patience, kinds words, and support during my absence.  I made a bunch of medication changes earlier this month, and it sent my low-level postpartum depression into a crisis.  In retrospect, I’m glad the crisis happened, because it spurred one other medication change … onto antidepressants.  (I’m using Cymbalta, which is both an antidepressant and an anti-pain drug for my fibromyalgia.)  While I was “more or less functioning” before, I feared I was missing the fleeting, precious joys of Vera’s first year.  The drugs helped almost immediately, and I’m feeling much better and am a happier, more patient Mommy to boot.

Hopefully also I’ll be a more energetic, more regular blogger…..  Looking forward to lots of good bloggy conversation to come!

Oct 092009
 

(image source)

About those upcoming posts … hopefully they sound interesting enough that you’re willing to wait a bit?

I’m going through a bad spot.  May be medication side effects, may be post-partum depression, may be quite a few things.  But long story short, I’m not functioning well and could use a couple of weeks off.  Hopefully everything will look better soon — I promise an update when it does!