Humble Thyself In the Sight of the World

(Men sing)  Humble thyself in the sight of the world

(Women echo)  Humble thyself in the sight of the world

Isn’t that how that song goes?  Oh wait.  It’s Humble thyself in the sight of the Lord.  I keep forgetting that. 

Literally.  No joke.  I have literally sung the lyrics incorrectly in my head over and over this summer.  Enough times that I forgot the true words.  And that’s not the only song I’ve screwed up.

When I was a kid we’d sing this song in church that went, “Cooperation is a big word…”  My new version has been “Humiliation is a big word…”  One of these songs pops into my head, without fail in any public POTS situation.  Here are a few examples:

• Whenever I use my handicap parking sticker.
• When I had to use a wheel chair at the zoo.
• When Greg had to call a couple of pastors on a golf cart to lift me off the ground and take me back to my cabin at camp meeting.  And I couldn’t even speak to say thank you.
• When I got stuck in the gym at camp meeting “wall walking” because the visual disturbance of the crowd had triggered a vestibular migraine.  And then I couldn’t leave because it was too hot outside.  Every time I’d try to catch a ride on a golf cart other people would get on ahead of me and I'd have to retreat back into the a/c.  (We call it my "pool of Bethesda moment".)
• Every time I wear my cooling vest and people run in all directions because they think I’m packing a bomb.  (Ok, so that one might be a little embellished.  But the insecurities come out like I’m 14 again and I feel like everyone is staring.)

The crazy thing is I’m very open about my condition.  I’ll tell anyone about what’s going on.  I have no problem telling you that even though I can walk just fine, the second I’m in the heat I vasodilate.  I become dizzy, short of breath, my legs start to give out and, if it gets really bad I have stroke like symptoms and can’t speak.  I can tell you that it’s happened multiple times just trying to get groceries with my kids and it scares me.  I can also tell you that sometimes I’m fine and nothing happens.  I never know which it will be.  This is why I have a handicap parking sticker. 

I can tell you all of that.  Buuuuut.  If I see you across the parking lot at Target, I’m gonna either park in another spot and risk becoming presyncopal or circle the lot till your out of view.  Then when I leave the store I’ll make perfectly certain you aren’t making your exit at the same time. 

And the whole time I shop two competing tunes are playing in my head, “Humiliation is a big word…” and “Humble thyself in the sight of the world.”

I can tell you that today, August 27, 2015 is by far my hardest POTS day yet.  And it’s not because I feel bad physically.  It’s because today is my baby’s eleventh birthday and for the third year in a row he is spending it at King’s Dominion.  My husband and kids are at an amusement park today and I had to tell my precious, almost as tall as I am baby, that I couldn’t go with him to celebrate his birthday.  I smiled brightly as I waved them off, and then collapsed on the floor in a puddle of tears.  I’ve cried off and on all day.  This precarious balancing act between acceptance of loss and fear of giving in to much to loss is agonizing.  I can tell you all of this after the fact, when the tears no longer flow.  But if you had shown up at my house today I’d have dried my tears in a hurry and put on my bravest face.

It’s always been interesting to me how patients are continuously embarrassed by needing help, or an assistive device, by soiling themselves, wearing a gown, … whatever it might be.  And we health care providers always tell them that there is no reason to be embarrassed.  Well, now I’ve walked a mile in their ugly hospital gripper socks… and yes.  I agree with every one of them.  It feels more like a marathon.  And I’m embarrassed right along with them.   I can explain to the nurse at family camp my “special  needs" in the heat but cringe with embarrassment when I actually have to ask for her help.  “Humiliation is a big word…”

And yes.  I do realize what the problem is.  And in this case it isn’t POTS.  It’s pride.  In my life, usually if I make a choice knowing that God is leading, it doesn’t really concern me what the rest of the world thinks.  I answer to Him.  But my personality is a caretaker.  I cannot delegate.  I’d rather do all the work myself than tell others what to do.  (Um… by others I mean anyone other than my husband and kids J)  So being put in the position of needing help, needing to be cared for and having to ask for help is excruciating to me.  But POTS is slowly teaching me to accept help.  I am learning the lesson that in all areas of my life, not just the ones I choose, what really matters is His opinion of how I handle myself.  By humbling myself in the sight of the Lord and putting the focus on Him, my relationship with Him can be so much deeper.  And I know from past experience that this is the solution to everything.  Because after all, it's not about me.

Today as I spent the day alone and crying out to God I felt so low.  I actually felt angry that it’s a beautiful day and not very hot!  I was wondering if I could have survived the amusement park and if I had given in to loss.  Sitting on my front porch, in the midst of my sobs I looked up at the beauty surrounding me.  And suddenly, inexplicably I was at peace. 

And for the first time this summer I remembered the rest of the words.  “And He shall lift you up.”

Invisible Illness, Race and Flipping the Bird

This last month has been rough.  ROUGH.  We are navigating through some difficult times and trying to make some hard choices.  Choices that are meant to better my health and our family… but they are breaking my heart.  And forcing me to accept more of my limitations.   But we have had a lot of help and support from family and friends and Debbie is learning to deal with and her downs. 

And right now I just don’t even want to talk about it.  This is what I wanted to talk about.

Judging.  No one likes to be judged.  Period. 

Am I right?  How many times have I heard, “Don’t judge me?” or “Stop judging me.”  But we all do it.  Sometimes we have to.  It’s important to judge whether or not it’s safe to go into certain situations.  But, myself included, we do it so often when we have no cause.  When it only tears someone else down.

I’m sure each of you is thinking of a specific time when you were wrongly judged.  Another interesting aspect of POTS is its invisibleness.  I will admit that most of the judgment I feel is self-inflicted.  I have always been and will always be my own worst critic.

However, there have been occasions when I have been criticized by others.  There was one instance in particular when I was in public with my 3 kids.  It was very hot and I was at a high risk of passing out.  I just needed to get one child to where he needed to be and get out of there.  I had to make a difficult, on the spot choice about how to handle the situation in order to keep all 4 of us safe.  A total stranger objected to my strategy.  She blocked my path and lectured me… threatened me!  All the while I was standing in the heat, unable to even respond because I was getting more and more dizzy.  When we were safely in our van with the a/c going I couldn’t stop the tears.  I couldn’t drive or talk for a while until the dizziness passed, and my younger 2 children were very frightened because I wasn’t responding.

This complete stranger had made a snap judgment.  She thought she knew better.  She thought she knew a safer way.  But she didn’t know the invisible world of POTS and how dangerous her way was for my family at that time.  She didn’t know the incredible danger that she placed me and my kids in by lecturing me in the heat.  

I am often surprised by face book posts.  People at times essentially brag about how they have judged others.  I will give one example.  (If this was you, please don’t be offended!  I don’t even remember who it was, I just remember the gist of the post.)

The post said that a lady had left her shopping cart next to her car, rather than taking it to the cart corral.  It accused the person who left it of being lazy and not caring that the cart could do damage to other vehicles.  So the poster had used his/her own vehicle to push the cart into the ladies' car! 

And I thought, “how do you know she was lazy?!”  That could have been me!  99% of the time I return my cart.  But there are times that Walmart Phenomenon is so severe that I can’t make it from the cart corral back to my vehicle without the support of the cart.  And I have left it by my van.  There are times that the heat is so intense that by the time I load the groceries into the back of the van I’m already becoming presyncopal.  And I leave the cart by my van.  And then I sit in the van for 30 minutes until the ice cream melts and I can drive safely. 

Do I deserve to be called lazy and have my van damaged by someone pushing the cart into my van?

Trust me, I do enough damage on my own.  About a month ago I was driving home.  I had felt OK.  A few miles from home the lights of the other vehicles really started to bother me a lot more than usual.  As I pulled into the garage I knew I wasn’t quite right.  I put the van in park.  I looked around and I couldn’t tell if I’d parked correctly.  I was almost certain I’d pulled in far enough, but since I felt so weird I pulled forward a couple more inches, just to be sure.  I hit the button to lower the garage door and crack!  The door hit the back of the van and now there is a very noticeable 3 inch scrape on the back of it.

At times I’m incapable of judging things I should be judging, like depth!  Even though I look perfectly healthy and normal on the outside, no one would be able to “judge” this about me.  People can’t tell by looking at me what is going on and therefore they are not equipped to judge.  Just as I am not equipped to judge you.

And don’t even get me started on the judgments that come from being a transracial family.  Those judgments go both directions.  We are either horrible, glory seeking people or saints.  Neither are appropriate or true.  And the fact that my beautiful daughter will be subject to judgment that I am exempt from, that I have never experienced and therefore have no foundation for how to help her navigate through… heartbreaking.

So clearly this subject doesn’t just apply to POTS, invisible illness and race.  Just because some guy cuts you off in traffic and flips you the bird doesn’t mean he’s a jerk.  Maybe he was just served papers for a divorce he doesn’t want.  Maybe the weight of his world is crashing around him and for a brief moment he took it out on you, a total stranger.  Does that make him a jerk?  No.  Does it make him human? Absolutely.  And guess what.  So are you.  And so am I. 

Being human also makes him a child of God, a child of the King.  We all are.  If only we would start giving each other the benefit of the doubt.  What if instead of saying, “What a *@*#!”, we said, “I wonder what invisible problems are overwhelming him today?”  And then instead of stewing about the bird we’ve been flipped, we pray for the bird flipper.  It may or may not change him, but I bet it will at least change your outlook on those around you.  We ALL have UGLY moments.  Seen or unseen.  And we are all God’s children.  Regardless of whether we behave like it or not.  Let’s treat each other as such and leave the judging up to our Dad.

Grief

In the past I’ve tended toward the conservative side in what I post online.  I mean, the first the face book world knew of me having any medical problems was when my husband posted that I was in ICU needing surgery due to my new pacemaker puncturing my heart causing bleeding into my pericardium.  So this is all kinda new and awkward for me.  And this here is raw and I feel really exposed posting it.  It’s a total Debbie Downer.  (Bet your dying to read on now!)  But I also believe that those of us with POTS and Dysautonomia need to open ourselves up.   Then perhaps, people who are fortunate enough to actually get a diagnosis won’t continue to be told, “It’s only POTS”.  Perhaps they’ll be better informed from the start about what they are facing.  So here goes… Debbie at her worst.

Grief.  It isn’t only limited to death.  And it can sneak up on you ever so slowly or pounce suddenly.  Either way, it’s crippling. 

I always push through.  Life has been incredibly stressful for the last 6 years for many reasons.  Blessed but very high stress.  Even before Dysautonomia hit me, it was very hard to keep up.  Life was stressful and intense even when I was healthy.  I have a wonderful husband and 3 precious children.  But our family also has special challenges that are physically and emotionally exhausting to us all. 

I started having health issues 5 ½ years ago that were mild.  The last 2 ½ years they have really escalated.  But I always push through.  I’ve always prided myself not only on hard work but fast work, accomplishing a lot in a short period of time.  Now I am so slow to accomplish anything, but I push.  I do all I possibly can.

Yet with all the special challenges in our home and my health and physical limitations, nothing has crippled me like grief.  It snuck up slowly and then paralyzed all at once.  I’ve mentioned before a quote from the book POTS Together We Stand.  It talks about the small and big losses with POTS that cause grief on a daily basis.  They cause you to grieve the loss of who you once were.

This week it was one “small” loss that spiraled me downward into grief.  We had a warm day.  A high of 64 degrees in January!  The Dysautonomia has caused small fiber neuropathy which has caused an inability to regulate my body temperature.  So I can’t stand to go out when it’s cold.  I wear layers inside all winter and I still feel like I’m freezing.  So with one warm day and baseball season approaching, I was determined to go out and throw a ball with my son.

What I didn’t figure on was the higher temperature causing a drop in atmospheric pressure, which triggered faster heart rates and a migraine.  By the time we finished morning schoolwork I couldn’t even glance out the window for the brightness, much less go outside.  The kids went out.  I struggled through laundry and fixing lunch.  When I called them in I collapsed on the couch with sunglasses and noise cancelling headphones, waiting for the Motrin to kick in.

And I was devastated.  The one day of the whole winter that I had a chance of going outside with my kids and I couldn’t do it.  That sorrow just triggered all the emotion that I suppress to keep pushing through each day.  I thought of all the ways I am not the mom I used to be, not the person I used to be.  All the ways I feel like I fail my kids.  I thought of our 4^th child that we were never able to adopt, but I still wish for.   I thought of how different all of our lives would look if I were well.  I was overcome.

But I still had 3 kids to finish the days schooling, so I pushed through.  Noah was particularly struggling that day in many ways.  He couldn’t focus.  I said, “Buddy, you did so well doing your school work with Daddy the other day.  How come you were able to get so much done with him?”  With his answer he spoke truth like only a child can, and it was as though all my fears about who I have become as a mother were confirmed.

“Because Daddy’s face smiles when he does schoolwork with me.  Daddy tells me, ‘good job’!  And your face just looks like that (pointing to my face) and you don’t say anything or you fuss at me.”

It was like a knife to my heart.  Who is this person I have become? 

Every day things happen that remind me of my limitations, but this week they just spoke more loudly than usual.  I got a text from my sister who is skiing in Colorado that it was -14 degrees there!  It reminded me of when they first thought that I may have MS.  I got a sudden, strange, definitive thought at that time.  I thought, “Well, if it’s MS, then I’m going on a ski trip this winter with my siblings.”  Sounds weird, but I love skiing with my siblings.  And I had a great trip to Utah with my brother and one sister years ago.  My other sister couldn’t leave her small children at the time.  I wanted to relive that with all of us while I still could.  Well the diagnosis wasn’t MS, it was “only POTS”.  So I didn’t plan the trip or ask my siblings to do this for me.

Well it hadn’t occurred to me yet, until I got that text about the -14 degrees, that I’m not sure that I can ski anymore.  Even if I could medicate enough to keep my heart rate down and breathe well enough to do it, even if migraines didn’t interfere, even if I could balance myself and wasn’t dizzy, temperature regulation is a huge issue.  And now I feel hurt and angry.  Not at anyone in particular, but I guess at the lack of knowledge and understanding about Dysautonomia and POTS.  If I had been given a diagnosis of MS I would have known to go and do as much as I could while I still could.  But with POTS, it’s all so vague.  No one really has a clue.

 And I’m left feeling like I missed my only chance.

So I don’t really have a nice bow to wrap this up with.  I guess I just want people to realize the depth that this illness has to it, especially those in the medical community.  Don’t pass it off as “just Dysautonomia” or “just POTS”.  Patients need to know what they are up against.  I wish I’d been forewarned and had some time to do the things I love to do, at least once more.  I’m still just really sad right now.  There are far more losses than I could begin to write here.  I’m tired of viewing every opportunity and invitation through the eyes of POTS, knowing so many things are not possible or too risky or too energy consuming to try.  I haven’t been able to even talk about it, but I can write.  It’s too raw and tears spill over whenever I try to talk.  

But I know I will eventually come out of it.  In the meantime I am still pushing through and trying to focus on the blessings.  5 years with Carrington this weekend!!  I am so sad that we didn’t adopt our 4^th child, but man, am I thankful we adopted her.  Even in the midst of my grief, I am not naïve to how good I’ve got it in the grand scheme of things.  There is always something to be thankful and give praise for, even if it comes with a lot more effort than usual.

Debbie Downer.  Over and out.