Limping Along

Those of you who follow the blog regularly know I have rheumatoid arthritis.

It’s something I’ve been living with three times as long as the years I’ve lived without Dominic and I find strange parallels in the twin journey of chronic disease and chronic heartache.

Both are crippling in their own way, both force me to work around the pain.  Both have changed me in ways I could not have imagined and certainly wouldn’t have wished on myself or my family.

Both have taught me to endure.

Both have taught me many other things as well:  

I have learned to be more compassionate.  With pain as my constant companion, it reminds me this life is hard and that it’s hard for others too.

I have learned not to take a good day for granted.  I never know when I will wake to an RA flare, I am constantly surprised by random heavy grief days and I can’t tell when I go to bed at night what tomorrow will bring.  So when a day is good, I grab hold of every moment.  I laugh, I move, I do things that make my heart sing.  And I store the memory for days that aren’t so good.

I have learned to be gentle to myself.  I can only do what I can do.  And what I can’t do today will just have to wait for tomorrow-or maybe wait for forever-and that’s OK.

I have learned to say, “no” graciously, without making excuses.  I try very hard to live up to commitments so I am selective in taking on new ones.  I know that if I take on too many, I’m sure to have to let someone down in the end.  I can’t make others outside my disease or my grief understand so I’m learning to not try.  Their disappointment or disapproval is something they have to carry, not me. (I wrote more about this here:  No. It’s a Complete Sentence.)

I have learned to create “work arounds” for the things that I have to do but are very hard to do. For my RA that means unloading the dishwasher two plates at a time instead of lifting the whole stack at once.  For my grieving heart that means spreading out the hard things over a week instead of a few hours.  It means not feeling compelled to answer every message, phone call or text right away if my mind is unclear or my heart too heavy.

I’ve learned to wear what’s comfortable.  Whether that is shoes that accommodate my crooked toes or refusing to put on a “happy face” mask in public-I am who I am.  I certainly don’t mope around or try to draw attention to myself.  But I’m just not responsible for making other people feel comfortable with my disease or my grief.

I have learned to plan “rest stops” on my daily journey.  It may be a moment to sit down or a moment to do something creative or a moment to watch a funny video-but each thing is designed to help me recharge for the next few hours.  If I try to soldier on I end up too tired and emotionally spent to do anything.  One day of that and I may lose a whole week.  So I pace myself.

I have learned that appropriate medical intervention and treatment is not a crutch, it’s a pathway to a more productive life.  I resisted taking medication for my RA for a long time-the potential side effects are frightening.  But when the swelling, pain and joint deformity became too much to bear, I gave in.  I shouldn’t have waited so long.  It was foolish. I will never be free of the disease, but my life can be better with appropriate intervention.  It’s the same with grief.  Anti-depressants and anxiety medicine do not remove the pain of grief but they can make space in a heart and mind to do the work grief requires.  There is NO SHAME in using whatever tools are available to make it through.

I have learned to ask for help. There are a number of things I just can’t do alone.  I used to be able to do them.  But not anymore.  Asking for help is not defeat.  I have to remind myself of that.  At the end of the day what matters is that what matters gets done-I don’t get “extra credit” for struggling through alone.

I have learned to speak my truth.  (This is one I’m still working on!)  If I am having a bad pain day or a bad grief day, I don’t try to hide it.  I just tell those who ask and those closest to me the truth. The energy I have to expend to keep it covered up means less energy to work on the underlying factors contributing to the bad day.  It’s just NOT worth it.  And I’m not good at hiding it anyway.

I have learned that walking (literally or figuratively) with a limp is not a defect.  It’s simply my life.  I won’t apologize for it.  If someone asks, I’ll share.  But if not, I just go limping along, making my way forward.  I might be slow, but I’m moving.

And that’s what counts in the end.

I will walk with an emotional limp for the rest of my life … But I don’t want it to just remind me of the struggle and the pain; I want it to remind me of a place of surrender, a place where God met me and blessed me. Otherwise, it is just wasted pain.

~Nancy Guthrie, The One Year Book of Hope, p. 332

My Choices Reflect My Focus

My daughter is a quote collector like her mama.  

Here’s the one she has taped to her dashboard:  

choices-reflect-rainbow

That is challenging for me.

When the one thing happens you think will never happen, well, that opens a whole chest full of fears you thought you’d locked inside.

But when I wake up I get to choose:  will I give in or fight back?

I’m learning that while I can’t stop the thoughts that fly around in my brain I can choose which ones I invite to make a nest there.

When fear threatens to undo me, I resist.  

I refuse to react to what MAY happen.  I choose to hold onto what IS happening, right now.

Truth is, either way, I have no control over the future.

I will not lose today because of what tomorrow might bring.

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What To Do With All These Feelings???

Feelings, feelings and more feelings!

I’m overwhelmed with them. All. The. Time.

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Sadness.  Longing.  Regret.  Hopelessness.

But also happiness, excitement and joy.

They bounce around in my head and heart doing battle like caged animals.

What to do? How do I keep my life in some sort of forward motion when if I give in to each and every feeling I’d be going in circles and heading nowhere?

One thing I can’t do is ignore them.

I’ve tried.

Stuffing pain down deep where I think it’ll never escape doesn’t work.

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It just sneaks through whatever crack I haven’t managed to seal tight and shows up at the most inopportune moments.  And the release is often explosive-hurting me and those around me.

Journaling is the best method I’ve found to let my feelings out in a more controlled fashion.

I can say whatever I want to on paper without worrying it will harm another’s heart.  I can write things I would never be brave enough to speak aloud.  I can mark my page with anything I want to-it’s for my eyes only.

I find that letting go of the feelings I’ve been holding in for so long often results in great freedom and release even when my circumstances haven’t changed at all.

This pouring thoughts out on paper has relieved me. I feel better and full of confidence and resolution.

~Diet Eman, Things We Couldn’t Say

And writing them down, I am often better able to discern the reason behind the feelings, better able to think of what I might do to help myselfeven if no one else can help me. Seeing it in black and white I can find patterns and pinpoint unhealthy habits that are leading me down deadend alleys.

Successful journals break the deadlock of introspective obsession

~Alexandra Johnson, Leaving a Trace: On Keeping a Journal

I might start a journal entry with a thought bouncing around in  my mind, or a quote or a Scripture verse.  I may ask a question-of myself or of God-write a memory or whisper a fear.

However it begins the page soon fills with things I wasn’t even aware were inside me.  And almost always ends in a better place than where it started.  

Not one outward circumstance altered.

Not one problem “solved”.

Not a single aspect of life “fixed”.

Journal writing is a voyage to the interior. ~Christina Baldwin

But my ability to understand my own heart and to respond to the unchanging circumstances around me has been enlarged and strengthened.

My journal is the safest space to explore the nooks and crannies of how grief is changing me from the inside out.

Writing is the only way I have to explain my own life to myself.

~ Pat Conroy, My Reading Life

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Repost: HALTing a Grief Spiral

I have to remind myself often of these tips.  So in case you do too, here’s the original post:  

If you’ve ever been in any kind of counseling or recovery group , you have probably seen or heard this acronym and advice: HALT  before you speak.

It’s a great reminder that I should take a moment to consider my frame of mind before I blurt out something that might damage a relationship or wound someone else’s heart.

I had never thought about it until recently, but it is also a great reminder to us who grieve that what we interpret solely as grief (which we cannot control) might be compounded greatly by other things  (some of which we can control).

Read the rest here:  HALTing a Grief Spiral

Surviving Social Situations After Child Loss

The first three months after Dominic ran ahead to heaven were full of social obligations.

Dominic left us in mid-April.  My youngest graduated college five days after we laid Dom to rest.  My eldest son graduated as a veterinarian two weeks after that.  He married two months to the day from Dom’s funeral.

Friends and family members stepped up and lent a hand.  Most people present were very aware of our recent loss and didn’t force small talk. My living children were amazing-flexible, supportive and loving even in their own deep sorrow.

But I’ll be honest, it’s mostly a blur.

I have photographic evidence of each event, but not a lot of personal memories.

Fast forward a few months and there are other social occasions I must attend.

By this time, for most folks, Dominic’s death was an event marked on a calendar they discarded at the end of 2014.  For me, it was as fresh as ever and the pain had actually increased as the absolute truth that he was gone, gone, gone was settling in my bones.

Without a thought, people I’d known for years trotted right up and said, “How are you?” They didn’t really want to know.

Smiling stylish woman showing sign excellently, isolated on red

They were tossing me the conversation ball in the only way they’d been taught to do it.

At that moment, I had a choice:  I could give in to my inner child and shout, “How the heck do you think I’m doing???? I buried a child!!!” OR I could extend the grace I long to receive and say something more controlled and measured.

Now, I’m not nearly as grace-filled as I ought to be or long to be, but I did manage to construct some “pre-recorded” answers to that question in a sincere attempt to be kind. They continue to serve me well.

Heres how I do it:

  • I give an honest, brief response that does not leave room for additional questions. Something like, “As well as you would expect” or “It’s hard, but I’m trying to hold on” or “I’m here” or “Today is a hard day”  or “Today is a better day”
  • I turn the conversation back to them.  I might ask, “How are you and your family?” or, if I had information about a specific event or person in their family, “How is so-and-so doing?” or “I heard you had a new grandbaby-tell me about him/her!” It’s absolutely amazing how easy it is to get people to talk about themselves.
  • If the person is insistent or persistent in questioning me and digging for details I politely say, “I can’t talk right now.  I want to be able to enjoy the (whatever event we were attending) as best I can.  Sorry.”

I also plan a physical escape route if needed:

  • Whenever I enter a space, I scout the restrooms and exits so that if I need to, I can leave a conversation usually by saying I need to go to the restroom.
  • I take note of who’s present and keep an eye out for a safe person I can migrate toward in a crowd.
  • If it’s a sit-down event I make sure to choose a seat where I can get out without having to depend on anyone else-the end of an aisle, table near the door, etc.
  • If I feel myself losing control, I try to leave before it becomes obvious to anyone else.

And I come prepared:

  • I carry tissues,
  • drink plenty of fluids,
  • have some aspirin and usually an anxiety pill with me,
  • wear one of the special pieces of jewelry my children have given me in honor of Dominic and touch it often to keep myself grounded, and
  • wear comfortable clothes and shoes.

I choose a focal point if I must look in the same direction for a long period of time (like at a wedding) and force myself to consider details so my mind won’t wander as much and possibly take me places I don’t want to go.

I remind myself that when that one person I thought would be there for me and but wasn’t floats up like there’s no rift in our relationship, this is not the time nor the place to correct that.

I smile and wave and preserve the dignity of the situation.

Most of all I try to remember that the people most likely to be insensitive or rub me the wrong way are blissfully ignorant of the weight of the pain I carry.  They can’t see the fragments of my shattered heart. They don’t know how much courage it takes to show up.

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I thank God they don’t and pray they never do.

 

Why is Anxiety Part of Child Loss?

It surprised me when I felt anxious after Dominic ran ahead to Heaven.

Not that the doorbell startled me, or that passing the place of the accident was hard nor that hearing motorcycles made my skin crawl.

But that every single day for many, many months anxiety crept up my backbone and made a knot in my neck.

It surprised me that I felt like I was literally going to explode.  I would walk and walk and walk just to push the negative energy out of my body.

I was also surprised by what seemed to be random triggers-smells, sights, foods, voices, places-that could send me into a tailspin of rapid heartbeat, hurried breathing, sweaty palms and a feeling of abject terror.

I didn’t know it then, but my experience is common.

It shouldn’t be surprising, really.

We all operate in the world as if it is predictable, as if it follows rules.  It’s how we stay sane.

If our minds perceived that most of what we experience has at least a small element of the random, we would sit frozen, terrified to move.

Who can live in a world where you never know what to expect?

When Dominic left this life suddenly, unexpectedly and without warning, my sense of safety and order was violated.

The illusion of control was stripped away.  The grid through which I viewed the world was ripped to shreds.  What I thought I knew about how things worked was proven unreliable.

Truth is, I never really had all that much control, but burying Dominic made that undeniably obvious.

This brutal disruption in worldview created a kind of internal panic.

I wasn’t conciously aware of it at the time because I was overwhelmed with sorrow and the pain of loss.  But my mind was trying to wrap itself around a new understanding of how the world works.

I needed to learn to live in a world where I couldn’t predict outcomes, I couldn’t guarantee safety (even if I did everything “right”) and I couldn’t REALLY plan for tomorrow because tomorrow might very well never come.

I had to figure out how to get out of bed instead of cower under the covers. To get in the car instead of stay at home.  To continue to love the people God gave me even though they may be taken any time.

Anxiety is an outward expression of the inward reality of this disruptive process. My body was screaming what my mind was silently sorting out.

As I have worked on incorporating my experience of losing a child into my worldview, the anxiety has decreased.

I don’t expect to ever live free of anxiety again-how can I when I know by experience what most people only imagine?

But I’m learning ways to deal with it when it rears its ugly head.

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And I’m learning that every time I triumph over it, I’m stronger and better able to do it the next time.  

courage-dear-heart

 

 

 

Can’t Fake It Forever

There’s a common bit of advice in grief circles:  Fake it until you make it.

It’s not bad as far as it goes and can be pretty useful-especially just after the initial loss and activity surrounding it.

Like when I met the acquaintance in the grocery store a month after burying Dominic and she grabbed me with a giant smile on her face, “How ARE you?!!! It’s SO good to see you out!!!”

I just smiled and stood there as if I appreciated her interest, a deer caught in headlights, silently praying she’d live up to her talkative past and soon move on to another target.

Faked it.

Boom!

BUT there comes a time when faking it is not helpful.  In fact, it’s downright dangerous.

Because if I fake it long enough and get good enough at it, I can convince myself that I have done the work grief requires.

Grief will not be ignored forever.

It bubbles up in physical symptoms and sleepless nights. It boils over in anger and impatience and anxiety and nervous habits.

There is no way through but through.  It has to be faced head on.

Life circumstances kept me distracted and busy for the first four or five months after Dominic ran ahead to heaven.

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I cried, screamed and was heartbroken-I definitely had my moments. But for the most part I functioned at a pretty high level.

It wasn’t until things slowed down that I had my come apart. And it caught me by surprise.

I was forced to sit in silence and face the feelings.  I was compelled to hear my heart shatter-over and over again.

I’ve now had 33 months of this burden of sorrow.  Almost three years to think about, work on and pray through the pain.  

I’m learning to pay attention to my own heartbeat, to my body, to my triggers, to my joy-bringers, my joy-stealers and my limitations.  I’m beginning to accept the bellycrawl progress through this tunnel of darkness by focusing on the bright light at the end.  

I still fake it sometimes-it’s not worth it to me to get into a long conversation with that person I only see every year or so.  Too much time, too much energy and too little reward.

But I’m learning to be more genuine with the people that matter most.  I’m learning to be honest about how I feel, what I need and how much I can do.

And I refuse to allow busyness to creep up on me so that I don’t have the time and energy to continue doing the work grief requires.  

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