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.
1 comment:
I had actually never thought about looking for a chronic pain support group on FB. There's an IRL one that meets once a month only five minutes from my house, and I thought that would be perfect. But they meet in a library room with hard metal chairs for TWO HOURS! I really tried to keep going - they were very supportive - but I was in bed, in agony, for two days after every meeting. It just wasn't worth it. And it made me resentful of all these people whom a judge had deemed "disabled" and given compensatory pay and Medicare who were all much more functional than I am. But that was their functionality on that particular day once a month, so it wasn't fair for me to judge. But a FB group sounds lovely! I'm putting it on my list for tomorrow!
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