On Work and Identity

Yesterday, I was having a conversation with a good friend of mine from law school who also suffers from chronic illnesses that make it difficult to work.  We were talking about the jobs we had done that made us feel alive.  Where our passions were.  And I realized that we had lost a great deal of our identity when we lost the ability to work.  One of the first questions we often ask people when we meet them is, "What do you do?"  Why?  Curiosity, of course.  But also because how we spend our time is often indicative of what we think is important.  Some careers take significant time and monetary investment.  A person's dedication to such a career shows that they find it worthy of that commitment.  It becomes part of their identity.  Some jobs are on-call all the time so that it becomes hard to separate job time from free time, again mixing vocation and identity.  So what happens in the world when you can't work anymore?  You lose that label.  You no longer get to claim that part of yourself.  Far different from those who retire and get to retain their label, those who lose the ability to work are seen as less than and even worthless.  And for some of us, who invested largely in our vocation because it was also where our passion was, it feels like a piece of us has died.  Now, I don't subscribe to the idea that a person who does not work is worthless, although I discovered that I have been fairly well-conditioned by society to believe it is true.  Cognitively, I know that my disability did not render me valueless--though I'm still working on the emotional aspect.  But if I still have value, where does it lay?

I decided that I needed to excavate myself.  I thought I would start with some nouns or labels that I thought identified me.  Some labels were easy.  Wife.  Mother.  Believer.  Writer.  Friend.  Other labels took more thought.  Survivor.  Seeker.  Competitor.  Peacekeeper.  Some ideas didn't fit neatly into a single word.  Work in Progress.  Trying to Find Balance.  Moving through Grief.  There were labels I was less inclined to admit.  Empty.  Food Addict.  Some that I hoped were temporary.  Obese. Chronic Pain Sufferer.  And some that were fun to remember.  Music Lover.  Gamer.  But as true as each of these labels are, none of them encompass all of me.  They are all simply parts of the whole. Part of the complex introvert who sometimes wants to go out and party.  Part of the strong woman who can do anything and doesn't need anyone, but feels alone and lonely without friends and loved ones.

I don't wrap up into a neat tidy package.  I don't always make sense.  I'm not always internally consistent.  I am not a simple algebra or calculus problem where I can input all these labels, solve for x, and come up with one ultimate label.  That's not how it works.  This realization made me frustrated and angry.  I had wasted all this time trying to figure out who I am and had gotten nowhere.  But as I sat with my frustration, I realized that what I was searching for wasn't really a label.  What I was missing was the passion I had for my work.  Back when I felt like I was making a difference.  When I loved what I was doing.  I want that back.  What I need to find is something I can do that holds passion and meaning for me.  Like when I was making gift baskets for the Ronald McDonald House in Detroit in memory of Patrick's birthday.  Or when I sang in the choir at church.  So that's where I am.  Figuring out what I can do that will give my life purpose, passion, and meaning until I get back to work, or in case I can't go back to work.  I don't know what it is yet.  It may end up being a few small things rather than one big thing.  But at least I have a goal and a good idea of what I'm looking for.  And these days, Yoda can keep his "Do or do not, there is no try."  I'm following  Trace Adkins: "But all I can do, is all I can do, and I keep on tryin'.  And all I can be is all I can be, and I keep on tryin'."

Who am I?  Just another person figuring life out one day at a time, grateful for grace and forgiveness. What do I do?  These days I'm a professional struggler.  But someday soon, I hope to be something more.
Where do I work?  Hopefully, wherever I am to make changes for the better.

On Brokenness and Healing--Without and Within

I have been thinking a lot about the new RFRA laws, or "licenses to discriminate" as they are being called.  Here's the thing.  Religious beliefs, no matter how sincere or firmly held, no matter how ingrained in one's life, cannot justify actions that violate someone else's Constitutional rights.  If they could, religious human sacrifice would be a protected action even though it violates the victim's Constitutional right to live.

I realize that's sort of a worst-case scenario, but how about the pharmacist who could refuse to fill a Viagra prescription because the patient is unmarried, and the pharmacist adheres to the belief that there should be no sex without marriage?  Could that pharmacist refuse to fill my daughter's heart medication because it's the exact same drug?  Or perhaps the pharmacist could refuse to dispense any drug created using stem cell research.  Are you willing to accept that risk?

What if I, a married heterosexual, ordered a wedding cake for my friends' wedding without disclosing whether the parties are a same-sex couple.  Should the business be able to refuse my order?  Even if it turns out it was a straight couple?  Should the bakery be able to demand to know that information?  If I don't disclose it, or lie about it, can they sue me?

I hear people throwing around the idea that these types of laws reduce government involvement, but they don't.  Instead, our courts become bogged down in litigation as every nuance and boundary of the law is tested, resulting in numerous new rules/laws.  

I am saddened and ashamed that so much progress has been lost; that so much animosity and fear exists in the hearts of many who label themselves Christians; that so many people have fled the church community because all they see is hypocrisy.

I cannot be silent.  I stand for the equal treatment of, and equal rights and opportunities for, all people, regardless of race, gender, religion, sexual preference, gender identity, age, citizenship, political party, marital status, affluence, manner of dress, employment, or physical limitation.  We are all human.  We should all be in this together, having each other's backs.   Each of us is a child of God; an expression of God's self here on earth.  Any mistreatment of you by me is a mistreatment of God by me.  I do not have to like your behavior.  I do not have to like you, or agree with you, or engage in the same behaviors as you.  But I am called to love you and forgive you; to do no harm. 

Please, stop worrying about labels.  Stop worrying about what consenting adults are doing in their bedrooms.  Stop inserting yourself between patients and their doctors.  Instead, worry about what we are doing to ourselves, to our world.  Worry about all of the hate and venom we are spewing at each other from every side.  Worry that we are all so anxious, we have become isolated and stopped caring about the least of us.  We have become so focused on the small goal of winning at all costs that we can't see that we are all losing.  Compromise is not a dirty word.  It is not losing.  It is about flexibility, survival.  It is the flexible tree that withstands the hurricane winds, while the inflexible tree is broken.  Compassion and empathy are not horrible traits to be excised.  The Golden Rule is NOT do unto others as was done to me.  It's do unto others as I would have them do to me.  Regardless of whether I have been cheated, if I do not want to be cheated, I will not cheat.

I am sad; anxious; broken from the loss of my son.  But I am heartened; lifted; loved by the acts of friends and strangers who have given of themselves in my time of need.  None of them has asked whether we have the same political party, religion, beliefs, what have you.  They simply saw that I was in need and gave of themselves to help me.  As I heal, I am called to do likewise.  Please, join me.  I promise you, it will be worth it.

Mother's Day

It's Mother's Day, and I will mark it the same way I have for the last two weeks--sitting in Jellybean's hospital room, worrying about his oxygen levels and heart function.  And I've been thinking about how much of a representation of motherhood that is.  Giving up "my" day for my children.  Certainly my mother and mother-in-law have done it for me.  College graduation and law school graduation were both on Mother's Day, and this year it was going to be Jellybean's baptism (turns out he made other plans).  But they both gave up, and were willing to again give up, their day to share it in celebration with me.

Still, I think celebrations are easy to share; it just means a bigger party.  As I sit in the hospital watching all the other moms (and all of this is certainly true of dads and Father's Day), I am reminded of the sacrifices we make as parents.  The very thing that makes tomorrow "my" day--my reason to celebrate--is the exact same reason I don't get to celebrate.  None of this ever crossed my mind.  Not when I was fighting so hard to become a parent.  Not when I knew my kids needed surgery. 

I have spent Halloween and Thanksgiving in the hospital with my kids.  I spent numerous Easter mornings in the ER with my kids.  I have spent my birthday on bed rest, trying to save my pregnancy.  But not once did I ever think I would have to give up Mother's Day.  Why, I can't say.  And why it matters is even harder to pin down. This week will see my 15th wedding anniversary, but missing that to take care of my child at the hospital doesn't phase me--I missed the first one for my grandfather's funeral, and we have missed many more since.  Phil and I have celebrated numerous occasions on alternative days because of crazy schedules or other various reasons.

So I admit to being flummoxed.  Why Mother's Day?  Why a moving holiday manufactured to sell greeting cards?  Why does it matter?  The pre-mom me would be shaking her head and ranting that I should be grateful just to be a mom--and I am.  I am humbled every year that I am able to label myself mother, when that label is denied to many.  And maybe that's it.  I didn't fight for my birthday, or my wedding.  I didn't struggle and wrestle and rage and weep to earn any label as much as I did to be called "mom."  So maybe I don't want to spend Mother's Day in the hospital watching over my baby because being in the hospital means I could lose the very thing that makes me a mom.

And I know that I will always be a mom, regardless of whether I outlive my children, but having two kids with heart issues keeps the reality of that happening ever present.  I am reminded daily of the fleetingness of human life and how precious it is and how important it is to make the most of every moment.  And I struggle and berate myself when I get angry or frustrated with my children because I don't want to regret those moments when my kids do pass.  But I have to balance that guilt with the reality that I have to rest.  I have to give myself permission every afternoon to leave Jellybean's room to go take a nap because self-care is important.

Moms are very bad at self-care.  We feel selfish when we do nice things for ourselves, or put ourselves first.  But Mother's Day gives us an excuse.  No one will begrudge us nice things, or time for ourselves, on that day.  Viewed in that light, it's easier to see why losing the one day society tells me I can loaf off on my motherly obligations is frustrating.  But the solution isn't in the holiday.  The solution is in changing to dynamic.  What if I took 30 minutes a week for self-care?  I would get roughly the same amount of time as the 24 hours of Mother's Day, but spread over the year.  I could have guilt-free me-time that would make me a better mom/wife/employee/self all year round.  I'm not sure how it would work.  It will take some time to refine the idea, but I think it's a good jumping off point.  A place to begin the conversation with myself.  Maybe I can work on it tomorrow, as I sit in the hospital, holding my precious, snuggly, sleeping Jellybean in my arms.  Because, you know, as a mom, I can multi-task. :)

Happy Mother's Day to all moms--but especially to those of us spending it with kids in the hospital.