Closer Than Family?

There exists a bond between people who have shared experiences that is quite like no other.  For example, parents who have lost a child.  I wouldn’t be able to comfort those people in any extraordinary way. But a Mama or Daddy that HAS lost a child can feel a very close, very special bond.  Closer than even their blood relatives.

The same could be said for women whose husbands have prematurely died, or vice versa.  Or for folks who’ve lost someone to a disease.  There’s just a “knowing” that goes on.  You don’t have to try hard to explain.  It’s a fellowship unlike any other.

I have “friends” on the internet that I’ve never met in person, or even talked with on the phone.  But because we share a diagnosis, Myasthenia Gravis, we are kindred spirits.  The same can be said of their families. If one of my MG folks has a mother, father, child, sister, whomever, that needs prayer, we pray.

Right now we are praying for my friend Cyndi.  Her husband Joe passed away a few years ago from Myasthenia Gravis.  I didn’t have the pleasure of knowing Joe, but I met Cyndi very shortly thereafter.  She was wondering if she should leave one of the support groups she had been in because of Joe, and everyone had this resounding reply:  No!

Cyndi is in the hospital with meningitis and MRSA.  She has been on a vent for a week.  If you are of a like mind, would you please add her to your prayers?

I mentioned support groups…I have several on Facebook, and they are my lifelines.  Truly.  To just be able to say three or four words and have 100 other people say, “Oh how I understand!” and you know they DO because they either have, or are, walking in your shoes.

The best-meaning friend, family member or spouse cannot truly fathom having Myasthenia Gravis.  That doesn’t mean they don’t try.  That doesn’t mean that they don’t love us like crazy.  They DO.  They just can’t 100% “get it.”

They may be closer to understanding if they themselves have a different chronic illness, but it’s never 100%.  I have had the pleasure of meeting several of my Facebook friends.  And let me tell you… I have felt, in almost every single instance, like I had known these people for my entire life. For example, on our way out to North Carolina last year, we stopped at my friend Dar’s house.  She and her husband Terry have been Facebook friends on mine for years.  Dar has MG like me.  We had *never* met them, and yet we stayed overnight at their house.  It was like seeing long-lost friends that we hadn’t seen in ages. We even changed our plans for the following day so we could hang out longer with Dar. You can’t fake that.  You can’t BUY that.

So when people say, “they’re only your friend on Facebook…it’s not real…” I HIGHLY beg to differ.  These people are TRUE friends.  They are MORE than real.  I love them all so much.  When one of us is struggling, those of us who aren’t rally around that family more than our own.

It’s not that I don’t love my family.  Of course I do.  Having a life-altering illness in common, however, is a very strong, immediate bond.  And like MG (unless there’s a cure) that bond is for life.

“Two are better than one, because they have a good reward for their toil.  For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!  Again, if two lie together, they keep warm, but how can one keep warm alone?  And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.” Ecclesiastes 4:9-12

Book Review: Because You Care

" 'I couldn't do what you're doing for him,' a friend says.... You can express that reason in a single sentence: 'I do it because I care.' "

And so begins one of the most touching, beautiful books I have ever read.  I suppose it's especially so because it's about caregivers, like my husband.  Parts of it were difficult to read, almost like I was spying into the mind of my husband, because he has cared for me since the second we were married, and will have to continue to do so for the rest of my life.

Like Cec Murphey and Twila Belk, and so many others to tell their stories in this book, it goes back to their wedding vows:  "In sickness or in health, til death do we part."  They said it, and they meant it.  My husband said it, and he meant it. And I'm so thankful he did.

Because You Care: Spiritual Encouragement for Caregivers is a gift book that any caregiver would love.  It's encouraging, it's supportive, it's a little sad without being depressing.  At the end of the book there are practical suggestions for the caregiver.  One of my favorites from MY perspective as one being cared for is, "Don't let the person you love 'become the disease.'  That is, remind yourself that the person is more important than the task."

My favorite for the caregiver is, "Ask for help when you need it.  Don't wait until you are exhausted or sick.  Ask now.  You don't have to be superwoman or superman; you only have to be human."

You can get all the information about the authors and how to get this wonderful book by clicking HERE.

Oh, and I would be remiss if I failed to mention the amazing photography by Betty Fletcher in this book.  It is truly stunning.

Things I Know For Sure

This post comes to you from the writing prompts this week from the infamous MamaKat.

One of the prompts this week was to write about things I know for sure. Well, in this world, there's probably more that I DON'T know, but there are many things I do.

I know for sure, that there is a God, that He loves me, that He has a plan for me, and even if I have to walk through the valley of the shadow of death here on this planet, He will be with me, and when this fleeting life is through, I will be in heaven, perfect, healthy, and happy.

I know for sure, that there are angels in my life in human form. Just a FEW of them are named Linda, Lori, Jessica, Grace, Patty Ann, Kerry, Karen, Shawn, Tina, Diana and Rachel. There are many more, but these have been encouraging me on a daily basis. Three of them I have never even met in person, but lift me up every single day. I love you girls.

I know for sure, that living with chronic illness on a daily basis is the most difficult part of my entire life. That there are days when I want to give up. That there are days when it's overwhelming, and I just want everything to go away.

I know for sure, that I never will give up. I don't have it in me. I've actually tried. It's lasted maybe a week. Then I get irritated with myself and pull myself up by the bootstraps, and start kicking butt and taking names again.

I know for sure, that the love of a mother for her child transcends understanding.


I know for sure, that only God can give you real peace. You can't buy it, earn it, steal it, or take it. You ask for it, and you receive it from Jesus.

I know for sure, that without the support of friends on this blog, friends from all over the world, I wouldn't be sane. Just when I think I'm ready to lose it completely, I get an e-mail, a card, a phone call, something....that someone cares about me, or that I have inspired them. Words cannot express the joy that brings to my heart. I want my time on this earth to make a difference. I want to leave a footprint of strength and courage and inspiration and education. I want my life to matter, whatever condition it may be in.

I know for sure, that every one of you reading this is precious. That YOU matter. That I appreciate you reading my words. That YOU may be, to a person like me, the most important person in their lives. That YOUR action however big or small, may impact another for eternity. And that, my friends, is a big deal.