6.13.2017

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.

6.03.2017

Of Baby Showers, Patrick, and Love

Today I went to a friend's baby shower.  I generally would not subject myself to all things baby when I am in the midst of a baby bug, but this was for a very dear friend.  She was one of Patrick's caregivers.  And because of that, in addition to things from her registry, I went down into my basement and opened up our box of Patrick's things and selected one of his sleep & play rompers to give to her baby since they are having a boy.  I wrapped it separately and marked the card to the baby from Patrick.  I told Phil what I was doing, and he agreed 100%.  Still, I was completely unprepared for the wave of emotion I would feel when she opened it up and then again at the end of the shower when I told her I hoped it was okay with her what I had done (she assured me it was).

Memories of Patrick are all around.  Pictures, books, what have you.  We talk about him, too.  There are days I think we are doing really well, but there are others when it feels like my wound has just been freshly ripped open and I might as well be back at square one.  I had one of these moments walking into the church nursery where I volunteered to watch children during church.  Seeing all of the things we donated just brought his absence freshly to mind in a way I had not expected.  It hasn't gotten easier.  Each week I walk in and all of the memories come flooding back.  I wonder what happened to the detachment and certainty and love I had when I was donating the items and putting the nursery together.  I have no doubt we did the right thing then, and I am certain I am doing the right thing now.  I'm just frustrated that my feelings have taken me on an unexpected journey.

This week marks the anniversary of when Patrick returned to the hospital for his final, months-long hospitalization.  I know that it has a lot to do with my mood.  I wonder if I will ever go through a year without having huge mood swings when these anniversaries come.  I wonder if I will ever stop yearning for a rainbow baby.  But one thing I don't have to wonder about is whether Patrick was loved.  He was so loved.  And he was special.  Not just to me, but to so any people.  And I am still working on ways to spread his love and light and joy with the world.  But I think I managed that in a small way today.  And yes it was sad.  But it was also so very good.  Because there is a new little boy coming into the world who is going to be loved so very much.  And he's going to get his very own Patrick snuggles.  Snuggles like his momma so freely gave to Patrick.  Because snuggles are love.  And love keeps going long after someone is gone.  And for that, I am so very thankful.

5.26.2017

Weight Evaporation

I mentioned previously that I was on disability for a degenerative disc in my back.  The pain was so bad I was on opioid narcotics and learning to live life in a wheelchair.  I couldn't have back surgery and I was at the point of resignation because there was nothing to be done.  Then I saw a neurosurgeon.  He thought that if I lost weight, the pressure on the disc would subside and the pain would recede.  With time, I dropped my weight from 295 to 250 and the pain went away.  I was out of the wheelchair and doing all of the things I used to do.  Unfortunately, I got lazy, and my depression hit back hard, my fibromyalgia got out of control, and I began self-medicating with food.  Not surprisingly, my weight went back up.  I ignored it until we hit 270 and the back pain returned.  It hit a high of 275.6 before I got things back under control.  My doctors recommended light exercise would help with the fibro pain, so I decided to take up walking.  I've also switched to drinking nothing but water.  I try not to eat fast food, but if we do go to a fast food restaurant, I order salad.  So far, I'm down 5.3 pounds.  My friend and I were talking, and I said I had released 5.3 pounds.  I liked to say "released" instead of "lost" because usually you try to find things that are lost, and I don't want to find these pounds again.  My friend said that I should use a more active term than released because I was working hard to get rid of them.  We threw out some terms and finally came up with one I liked.  Evaporated.  I had evaporated 5.3 pounds.  I liked it because it was more active, but also sounded like a natural process, similar to melting off pounds.  It created a nice visual I could use when I was walking, too.  So here's to more weight evaporation and getting back to a healthier me.  One step at a time.

5.24.2017

The "F" Word

In my last post, I mentioned that I was on disability.  I was previously on disability for depression after Patrick died and for a degenerative disc in my back until I lost enough weight to make the pain stop.  Recently, my fibromyalgia has gotten out of control.  The pain and stiffness began to come more frequently.  My good days came and went with the weather.  I am exhausted all the time, no matter how much sleep I get, or if I take a nap.  But what bothers me most is the brain fog.  It's just so frustrating.  I forget words.  Simple words.  Useful words.  All kinds of words.  All the time.  It makes talking and writing much more difficult than it used to be.  And for me--the person who uses words for precision and to figure out my thoughts--it is infuriating and disabling.  Then there are the crazy things I do, like pour cereal on plates instead of in bowls, or put toothpaste on my flosser.  Twice I ended up in my car to run errands without shoes on.  But the real kicker happened this weekend.  I was at church, and there was a person there.  I sat and talked with them, and Phil told me their name.  Not once did I recognize this person.  Not until much later did Phil mention their spouse, and I suddenly knew who they were and that I had met them several times before, had long conversations with them, and even held their children.  Granted it had been in the years before Patrick, but still.  I have always been good with faces and voices, even if I am bad with names.  It never occurred to me that I would forget a person entirely because of the brain fog.  Now, it's possible that it's something other than the brain fog.  In fact, my doctor said if the brain fog didn't get better, he was going to send me for a neurology evaluation just to rule out anything else.  But, whether it's brain fog or something else, I'm terrified that I may not be able to go back to work.  My job requires precision and being detail-oriented with words and grammar.  How can I do that if words fail me?  How can I do that if I have to triple-check basic emails to make sure I have correctly typed things that used to be so simple?  I'm seeing a rheumatology-certified NP next week who will hopefully help me get my fibro under control, but fibro meds usually work on the sleep and pain and stiffness.  I don't know any that help the brain fog.  Now maybe fixing those other things will help the fog.  I don't know.  What I do know is that, for now, I feel trapped in a body outside of my control.  So whether the "F" word if fibro, or frustrating, or f*^%, they are all in my vocabulary these days.

5.23.2017

The Baby Bug

Recently I have found myself surrounded by lots of new babies and expecting mommas.  And it's been fun to get to snuggle all these new babies and smell their little heads.  But somehow, even without ovaries, I've been bitten by the baby bug.  Don't ask me how.  I thought post-menopausal women were supposed to be immune.  Apparently not.  Live and learn.  I've spent these last few days desperately missing Patrick, and I know that has a lot to do with why I'm feeling this need for a baby.  I also know that if I sit down and think about things logically, it doesn't really make sense to have a baby.  I'm currently off work on disability, and Phil is at his limit on caregiving right now.  Mira is finally reaching the stage where she is almost helpful.  To suddenly add 18 years to our day-to-day parenting at this point doesn't sound terribly exciting.

I mean, even assuming I could get Phil and me on the same page to agree to another child, then what?  How would we acquire said child?  Our house is never clean enough to pass a foster care or adoption review.  My baby factory is gone.  That leaves using a gestational carrier with an egg donor.  Not an inexpensive scenario.  But hey, I'm just throwing things out there.  Let's assume we made a GoFundMe page and people were nice and funded this endeavor of ours.  Then what?  We'd have the stress of getting the carrier pregnant and going through all the IVF stuff.  Assuming we were successful and got a child, then there's the up late at night and all of that good stressful newborn stuff.
Still, on the flip side, there's getting to see them grow and learn and do all the cute silly things they do that make all of it worth it.  The hugs.  The "I love yous."  A sibling for Mira.  And all of these are good and wonderful things.  And maybe they could override my concerns about being a good caregiver.  And maybe we could do it.  But part of me knows this bug bite is just a partial urge to replace what I lost.  Not that I could ever replace Patrick, but I lost my baby.  I lost the opportunity to see him grow up.  I want that.  But even more, I want Mira to have a sibling.  I want that for her, and I know she wants that very much.  And if I can give that to her, I mean if I have the capacity to even try, isn't it worth it?  Wouldn't you do anything for your kids?

 I don't know the answer.  There isn't a good answer.  There sure as heck isn't a right answer.  There's just me and Phil.  Muddling through.  Together.  Talking.  About where we are.  What we want.  How we feel.  Respecting each other.  Just getting by.  One day at a time.  Maybe we'll do it.  Maybe we won't.  I haven't written this to change Phil's mind.  Rather, my friend reminded me that I use writing to pull my thoughts together.  It's more about figuring out where I am--the answer to which is all over the place.  But at least I have a better handle on the underlying currents that seems to be feeding the bug.  And that's a good start.

1.22.2017

What Kids Understand

Two nights ago, we held a non-partisan candlelight peace vigil at church the evening of the presidential inauguration as a way to help calm some of the anxieties and anger people were feeling--whether about the upcoming administration or people's refusal to accept it.  In addition to readings on peace and songs about peace, we had a section of the service where we wrote things down on dissolving paper that we wanted to let go of to bring ourselves peace and placed them in a bowl of water for them to dissolve away.  Then there were blue cards we could write things down on we wanted to carry with us to have more of to bring ourselves peace.  Finally, there were candles we could light.  I wasn't sure how much Mira understood, but we brought her because we both wanted to attend.  When it came time for the participatory parts, she hopped right up and went straight to the table.  I watched as she wrote down on the piece of dissolving paper, "Stop being scared of bad dreams."  Why yes.  That is exactly something to get rid of to have more peace in one's life.  I was duly impressed.  She promptly placed that in the bowl of water and went back over to the table and grabbed a blue card.  She showed it to me when she was done.  It read, simply, "LOVE."  Again, I was amazed at her ability to cut to the heart of things.  I, too, would want more love if I were to be at peace.  Then we lit our tealights and sat down.  At the end of the service, she ran to the table and pronounced that she had more things she needed to write down, and proceeded to include, "Stop thinking bad thoughts," and "Stop not doing exercise" to the things she dissolved.  I know she's already lived a lot of life, but I forget how much kids really understand even at her age.  She may not always articulate herself in the way an adult would, but I need to remember to ask her more questions and listen more to what she has to say.  There's a lot more going on in there than I give her credit for sometimes, and I would do well to remember that more often.

7.25.2016

Pondering an Unexpected Coincidence

I just returned from Mended Little Hearts's third annual CHD Symposium and am, overall, energized and excited about the things that are coming.  I saw friends of old, met lots of new people, helped shape conversations about the needs and desires of the larger body, and made suggestions that people indicated were helpful and spurred potential chance and work in various areas.  I was feeling like a catalyst for good and for change and was so excited that I felt well enough to go and that I had two wonderful women to carpool with so I was able to make the trip.  We are making plans to expand our local group with me taking on a larger role and potentially even a coordinator position depending on how the current leadership votes.

The odd part came when I recognized one of the speakers as someone I had attended school with, who was part of a group of people that had managed to make middle school and high school very difficult for me.  The speaker spoke about a topic that I wanted to ask further questions about, but I couldn't do it.  In that moment, I again felt like a teenager and all I could do was hope that the person did not see me in that room of 122+ attendees and speakers and, if they did, they did not recognize me.  I considered emailing the person, but I became concerned that even emailing might reveal my identity.  I thought long and hard about what to do, but it came down to this.  Medical care is all about trust.  You must trust the providers, procedures, medications, devices, etc. every aspect of care when it comes medicine.  This is doubly true when it comes to your children.  And I simply cannot trust this person.  I cannot trust that they will not remember me; that they would not do something to spite me. I realize that this says more about me than it does about them, but it doesn't change how I feel.

At the same time, they may very well be a different person now than they were in high school, so there is no reason to destroy the trust others have placed in this person over actions they made when they were a teenager. And although I do not trust this person, I remember that they are smart, and I can trust that.  So, I will not cut off an avenue of treatment for Mira simply because I had a bad experience with someone in high school.  So I will not reveal who they are.  And I will not reveal this person's actions to Mira.  If Mira should come across this person in her care as an adult and feel she can trust them, that will be her decision to make.  I will not make it for her.  But for the next 13 years, while it is my decision to make, I will look for an alternative way for her to benefit from the topic without having to directly contact the speaker, whether by using Mira's own care providers as go-betweens, or finding another solution.

But in the meantime, this unexpected coincidence has left me pondering.  If there are no coincidences, why did this happen?  Why did this "safe space," this place where I have found meaning and purpose, become sullied by the taint of old high school memories?  Maybe it's something as simple as an opportunity to let go of some of this emotional stuff that's still hanging on. Honestly, though, I'd have rather it just stayed buried.