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doing our parts (sharing our stories)

“We’re praying for you. Please let us know how you’re doing and what we can do.”

I’ve said it a million times and have been on the receiving end of the phrase even more.    I’ve always meant it –  I want to know what’s going on so that I can support my friend, but I don’t want to be nosy.  I want to help, but I don’t know how.

Over the past couple months, I’ve had people step up in the most incredible ways.  We’ve been loved and supported not only by family but neighbors and friends.  I recently made a post on my personal Facebook page about a dear friend that went out of her way to make a special allergy-safe meal for my family.  Their family has similar food allergies, so she was one of the only people I would feel comfortable making a meal for us.  But I was still uncomfortable… Not with the safety of the food, but the fact that she took so much time to help us out.  With the fact that I had to say “Yes, actually, things aren’t totally sunshine and rainbows – we could use a helping hand.”   What I realized then was that was my own issue with self-reliance- I don’t want people to help me out or know the messy nitty-gritty of how things really are. I want to be able to do it all myself and I don’t want to have to let others in.  I don’t want them to see the messy.  Accepting that you need help and then receiving it truly harder than giving.

Lately, I’ve been forced to change my attitude because I clearly can’t do it all myself.

“Can someone please get the door? Can someone grab my stuff? Can someone please help me shower?”  In a short time, I’ve gone from being an independent, strong woman to someone that, at moments, literally hasn’t been able to do anything for myself.  Someone who has had to be physically turned in bed to prevent bed sores, assisted in the bathroom and, unable to bathe myself, allowed a stranger to give me a sponge bath and wash my feet.

A stranger… Washing my feet…

Guillain-Barre Syndrome (GBS) takes away a person’s pride in a hurry.  There’s no other choice.  Just like any other crisis, it affects not only the person fighting the illness but their entire inner circle.  Everyone is in it together.  Everyone is affected, but in different ways.

Before I ended up back in the hospital, I’d started reading a book called “Just Show Up” by Kara Tippets and Jill Lynn Buteyn.  At first, I thought it might give me a few pointers on how to be a better friend to those going through hard things.  And it has. But it has taught me far more about opening up about the truth and learning to accept help.  Learning to accept help requires true humility, which is not in our nature.  At least not in mine… It’s something I’ve been working on though.

One of the sections of “Just Show Up” talks about how one of the authors, Kara, dealt with cancer and how she was forced to humble herself and allow herself and her family to be loved as she dealt with chemotherapy. Her struggle went on a while and she ended up writing and sharing her experiences so that others may learn from them.  I’m so glad she did.

Her friend, Jill, writes “One big way Kara has given back to us is by keeping us informed of what’s going on.  She’s blogged and been very open during her whole journey…. While I completely understand the need to keep certain things private in suffering, figure out what you’re willing to share and then finding an avenue to do that is a big blessing to those around you.  It helps them know how to pray and how to help, in addition to giving them a way to know how you are and what’s going on without having to ask.

I was reflecting on that passage the other day when I received a phone call from someone I’d befriended last fall – a priest with a heart of gold, love for God and a way with words.  He had no idea what had transpired over the past couple weeks and was simply calling to check in.  As I told him where I was and what had come about, he shared with me some thoughts on humility, pride and humiliation.  I tried to take notes, but my hand was fatigued and my writing nearly legible…  Our conversation centered around people sharing their stories to glorify God and how He doesn’t always mean for us to be comfortable.  After I’d shared a little bit about what was going on in my life (and my family’s) I told him how recently I had been sharing part of my story and encouraging others to write their own, but I was uncomfortable sharing the truly hard parts of my own.  I was in a wheelchair, bloated beyond recognition, and I didn’t want anyone to see me.  The visual aspect of it – the sudden weight gain and loss of mobility was oddly one of the hardest parts for me.  It’s much easier to share the pretty and the easy – the things that make people smile.  Who wants to see some puffy, middle-aged woman complain about how hard things are when things could always be so much worse?  I told him that I was torn because I’d received so much encouragement over the years, particularly lately, to share my story but I wasn’t sure whether I should continue to write about my recent “journey” anymore.

He asked me point blank – “What’s the worst that could come of it?”  I fumbled for a minute and said “Well…I guess… People would look at me like a complainer. Or someone that wants attention. Plus, they’d see the really ugly parts…

He said something along the lines of “There’s a difference between people who are simply sharing things for self-promotion or to get likes… They don’t feel the level of discomfort that you feel. There’s something to that… God doesn’t always mean for us to be comfortable.  I’m not saying that you should or shouldn’t do something, but pay attention to the discomfort. Let me ask you this… What would you do if nobody cared? If there was no fear?”

I responded, “I would share the parts of my story that are unique to me (not belonging to my children) in hopes that others would feel like it’s okay to not have all the answers.  We all have our own hard things – each of us does.  Feeling like you have to be perfect all the time can be incredibly isolating.  NOT talking about these things (in an appropriate way, with the right people) can really mess you up.  I have absolutely no issue admitting upfront that I’m a hot, hot mess and have more baggage than a 747, but I still believe there is a purpose to all this.  There has to be.

But… I’m still not sure why I should bother. Isn’t it incredibly narcissistic to think that anyone would care?  What difference can I make?”

He shared about what a difference an individual person’s testimony can make and encouraged me to read the book “He Leadeth Me” by Walter Ciszek.

“Yeah…” I responded. “But that guy went through some serious stuff. He should have written about it. Me…”

He explained “We’re only supposed to do our part.”

A little uncertain about what that meant, I went about my weekend and focused on recovering from the busy week.  I decided that maybe part of what he meant was that my ramblings would serve to inform those that want to pray for us to know exactly how to pray and what we need.

Then I made an outing to the gift shop downstairs in the hospital for a change of pace and met a nice lady in a wheelchair.  Overly curious, I asked her about how she ended up in a wheelchair and how long it had been.  I could tell that she was a little taken back by my boldness and I began to question whether I should have asked.  It suddenly occurred to me that my going around and asking other people in wheelchairs how they got there and how long it had been was the equivalent of my four-year-old asking people what their dog’s names are and where they live.  Innocent but naïve.

She shifted in her chair for a second and looked a little uncomfortable.  Then she began to share a story of incredible bravery and strength – far beyond anything I’ve ever experienced.  Her story is for her to share, but I can tell you that it was the kind movies are written about.  She shared openly and then took a breath and said  “You know… People don’t ask me much anymore… It’s been a few years… But I have learned a lot and don’t mind telling my story.  I’ve come through depression and fought for my children. They told me I’d never walk and here I am.  I still need my wheelchair and I’m in a lot of pain, but I can take a few steps sometimes. It’s a messy story, but I’m alive.  I learned to walk again for my children because I didn’t have any other choice. I’m fought hard and I’m alive.”

We sat a while as others walked past and I soaked up her strength.  I realized that sharing our stories is a very personal thing.  For me, it’s easiest to sit behind my computer or camera and process and share life that way.  I’m doing my part to push through the discomfort to help my family and friends know how to pray for us.  I’m uncomfortable sharing the messy and asking for help, but when I do it from the safety of my computer it’s a little less scary.  I’m making a difference by being honest with my tribe so that they know how to pray.  To pray for humility, freedom from pain, resiliency, and recovery.

For my new friend, she chooses to share her story one-on-one, as a personal testimony of human strength.   She is proud of all that she’s overcome and appreciates the opportunity to share her testimony with others.  She’s not trying to change the world, she’s just trying to do her part to encourage someone.

Both of us are pushing through the discomfort and doing our parts the best we know how.  I can’t promise that I’ll write regularly, but I’ll try to share some photos I’ve taken along the way as well as our prayer needs.  It may not be pretty, but it will be real and full of hope that all this will serve a purpose one day.

– Holly

p.s. – We’ve decided to extend the t-shirt campaign and donate proceeds directly to GBS research and advocacy efforts.  Order your shirt here today and help fund the efforts of The GBS/CIDP Foundation International.

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