I have heard many people talk about others dealing with difficult
things in life. Things like the death of
a loved one or cancer. People are always
praised for not complaining or for putting on a brave face. There is good reason for this. But people grieve in different ways. I’m sure some only “complain” to God or to
their spouse. I know personally I can be
brave most of the time, but there are those moments when I just can’t do it any
longer. I don’t think that there is an
exact right or wrong way to handle each difficult thing in life. If you melt down and complain and cry out to
the heavens I don’t think that means you are doing illness the wrong way. Each person must be free to work through
their emotions in the way they need. I
realize this is one reason I haven’t written before. I don’t want to be criticized for complaining
or not being strong.
Oh, it is so strange how this all plays out!! I couldn’t have cared less what people said
or how they criticized my choice to adopt or anything else I chose that I felt
to be God’s leading. But with illness I
have had no choice. And I find myself
insecure and wondering what others think.
Yet I had fully surrendered my life to God, for Him to do as HE chose. I assumed He would choose another
adoption. That my life would settle down
as the kids got older and I would begin speaking for Compassion again. I would see hundreds of kids sponsored. Maybe we’d foster again and never have an
empty nest. I never imagined this. Yet why do I assume that this is not just as
much His leading?
I was reading recently the book “POTS Together We Stand” by
Jodi Epstein Rhum. There is an article
in it by a psychologist, Michelle Roger, who also has POTS. She talks about the stages of grief and then
goes on to say,
“But what do you do when the event that brought about the
grief in the first place never leaves?
How do you deal with something that can cause little losses (and
sometimes big) every day, such as a chronic illness like Dysautonomia? Living with Dysautonomia you are constantly
reminded that you are no longer the person you once were. From the moment you wake up, each and every
morning is a struggle. Just to get out
of bed and dress you are reminded every step that you aren’t like other people… ”
“…perhaps the biggest loss living with chronic illness is
the loss of you. By that I mean the you,
who you once were before you became ill; the picture you had in your head of
you and where you fit in the universe….. It’s often not until you are faced
with something like illness, that you realize that you did indeed have such a
picture, one to which you were particularly attached.”
I am realizing that I was oh so attached to the picture I
had of myself. I was super woman. I was patient and always played with my
kids. I was there for every field
trip. I’d never yell at them. I’d speak to them about God and His goodness
constantly. I was always there when they
needed to talk or cry. I’d support my
husband at all times. I was in super
shape physically. I could hike several
miles with a child on my back and barely get winded. I was an
advocate for those in poverty and spoke up for adoption. I taught at church. I was
going to work alongside my children in food pantries. We were going to foster again, adopt again,
live overseas, do mission work, meet all our sponsored kids.
So here is the reality.
I’m not trying to be depressing or complain. I just want to give a glimpse into what the
POTS world looks like. Reading a list of
symptoms can seem so abstract. The
reality is that being my children must be hard.
I have such light, noise and motion sensitivity along with debilitating
fatigue that I snap. All the time. Kids are a bundle of noise and motion even
when they are perfectly well behaved. It
takes 3 times the amount of energy for a person with POTS to stand as it does
for a normal person and mornings tend to be the worst as your body tries to get
used to being upright again. So when I
stand and make them breakfast, I know it sounds utterly ridiculous to a healthy
person, but I often barely have enough energy to muster a smile for them, much
less speak of God’s goodness.
When I eat, blood is diverted for digestion making it even
more difficult for blood to make it to my brain. So my heart pumps even faster. So I eat and I feel like I’m running a
marathon. Or I don’t eat and I’m grumpy
and hungry. The days that I choose not
to eat, I then eat too much when Greg gets home and then I’m useless. Or I push myself and nearly pass out. I feel like that is completely unfair to him
to have to take over after his hard day of work. He is completely willing and wonderful, but I
don’t want him too have to do that.
Taking my kids out to play in the summer can be dangerous. Heat dilates blood vessels, thus making the
condition worse. Thankfully I’ve never
passed out but I have had multiple times where I was very close and completely
incapacitated for a while. Even running
errands in the heat scares me because I get so dizzy and my heart rate becomes
so fast. Sometimes I’m insecure knowing
that I could get into trouble very quickly if my vehicle was to break down or
we have an accident. It’s definitely a
lesson in learning to trust and rely on God.
But yet, it’s hard to tell your kids that you can’t go see
fireworks for 4th of July because of POTS. It’s hard to take your kids to camp meeting
and realize your 9 year old is afraid to go play with his friends because he
knows it’s hot out. He is afraid what
will happen to you and his little sister if you are alone and pass out. It’s hard that today I missed Carrington’s first
field trip to the state fair. I’m the
kind of mom that doesn’t want to miss a thing.
It’s one of many reasons we homeschool.
I agonized over it! I missed her
pride of going with her classmates, her excitement. She is too little to understand, “but WHY can’t
you go Mama?!”
I used to pride myself on being very physically fit. We attempted an amusement park this summer
and I was so embarrassed because I had to take a cane with a stool and sat in
lines panting for breath. When I tried
to walk I got right sided weakness and slurred speak. It took me a week to recover. And it’s not that I don’t exercise. I still do daily. I’ve had to modify my workouts but I still do
the best I can.
I used to love walking the hills at camp. I could carry a full conversation without
getting short of breath. This summer someone
said to me on those same hills, “This is some workout, huh?” I couldn’t even give a one word answer, just
a weak smile. I knew he’d said it because
he felt sorry for me as I was clearly struggling to make it. I felt completely humiliated. (Hmm, prideful much? Just realizing some lessons perhaps I need to
learn from this. See, writing is
therapeutic!)
As for me being some great advocate in the war on poverty,
well I barely have enough energy to get through each day. Many times I don’t make it through the
day. I feel like I don’t provide well for
the needs of my own children. I have no
physical or emotional energy left to tackle the needs of the world, even though
they are important to me. Live
overseas? I can’t be without A/C for a
day. Some great missionary I’d be.
Thank God I have still been able to work. I only work 6 days a month (besides
homeschooling the kids every other day) and every time I wonder how I’ll get
through it, but I do. It is exhausting
and it usually takes a day or two to recover, but I can do it safely. That does wonders for my sense of wellbeing
and accomplishment.
But it’s not just my own picture of who I am that is
lost. One of the things that saddens me
the most is that my kids don’t seem to remember who I once was. I was the one who went nonstop from morning
till night, I accomplished so much. Now
all they see is the me who fatigues so quickly, the me who has to stop and rest
all the time, the mom who gets so short of breath when we try to play baseball
that we have to stop the game, the mom who is short tempered and is constantly
asking for quiet and stillness.
So are you still with me after all that depressing mumbo jumbo? I did say I wanted to show the reality of the
POTS world, so there it is! And if I am being perfectly honest, this only gives a small glimpse. But I also have
a little confession. Life is so busy
that I don’t have much time to process all of this. I don’t often think about prognosis even
though it has gotten worse very quickly.
I just don’t have time to dwell on it.
But I do manage to get jealous. I
know so many wonderful adoptive families out there. Every time I hear that someone else is
adopting again or someone else is moving overseas or going on mission trips or
starting a new great charity, I get jealous.
Ridiculous right?! Instead of
being happy and grateful that someone I care about is living the dream, instead
of being thankful that another child is gaining a family… I have a mini pity party. I cry out to God, “Why?! I would have done all those things! I was not only willing but I WANTED to!!!
Why?”
Reading over the blog last week I read this that I wrote about having no greater joy than living out God’s will for
me. Then I’ve been reading ”Dangerous Surrender” by Kay Warren. She talks about a time in her life when she
felt “put on the shelf” by God when she had dreams of how He could use her. Her husband, Rick Warren, was becoming
extremely in demand. And she was
jealous. She finally prayed to God,
“If taking up the cross to serve you means being put on the
shelf indefinitely or even forever, I’m yours.”
And later she says, “I stopped fretting over what would happen to me;
any gifts I had were given to me by God, and if he chose to use them in a way
that was different from the way I wanted them to be used, that was his
decision. I was finally at peace.” And later, “You see, it really isn’t any of
my business—or your business—what God does in someone else’s life. My only business is to follow him.”
Wow. I haven’t had
been able to accept my current condition because, although I never put it in
words, I thought that POTS derailed not only my plans but HIS. My joy comes from knowing I am living out His
will for my life, yet I had fully surrendered to Him and told Him I’d do
whatever He asked. Did I think POTS
caught Him by surprise? Perhaps He
didn’t cause it. I don’t know, maybe He
did for some divine purpose. But either
way He can certainly use it to work out His perfect will.
But I have to stop fighting against Him… even if my dreams
are put on the shelf.
I felt such peace after reading Kay Warren’s writing. And I must say I am sorry to all the adoptive
mamas I know out there that I have envied.
It is not my business what God does in your life. But I can truly say that God has given me
peace and I am so happy for you and for your precious children and the many
lives you touch with the work that you do.
So the reality is that POTS is no picnic. Not for me, my husband, my kids, or my extended
family. But I had placed my life fully
in God’s hands, so why did I assume this wasn’t for my own good? When things went wrong I tried to grab back
control, forgetting the lessons I’d learned. I am so much more at peace now remembering
that even in hard times I can have joy as long as I am fully surrendered to God
and His will.
One of my favorite quotes comes from Jennie Allen’s book
“Anything”. “You have to thank God for
the seemingly good and the seemingly bad because really, you don’t know the difference.” Now I am excited to see how God will use this
“seemingly bad” for good and for His glory.
The Covenant Prayer introduced by
John Wesley and credited to Richard Alleine
I am no longer my own, but yours.
Put me to what you will, rank me with
whom you will;
Put me to doing, put me to suffering;
Let me be employed for you or laid aside
for you,
exalted for you or brought low for you;
let me be full, let me be empty;
let me have all things, let me have
nothing;
I freely and heartily yield all things to
your pleasure
and disposal.
And now, O glorious and blessed God,
Father,
Son and Holy Spirit,
you are mine, and I am yours.
So be it.
And the covenant which I have made on
earth,
let it be ratified in heaven.
Amen.
