Living Life in Limbo

I’ve been living in limbo for almost four years now….  Four years ago I was in the process of expanding my business, planning a vacation for my family, teaching fitness classes, and working towards various personal, family, and professional goals.  Then, one fateful day in October, I collapsed on said family vacation and all the pieces of my life were instantly suspended in space and time.    

It kind of sounds like a movie plot.  Maybe it could be, except the most exciting parts seem to have already happened.  Limbo, where I sit today, isn’t very exciting.  I can imagine the void of my life where all my hopes and dreams are floating in some viscous liquid that’s holding everything in suspended motion.  I’d like to rescue those dreams, but they are just too far away and my head is hammering and my limbs are made of lead and I’m just too stinking tired to move.

It’s raining and thundering outside right now and my mood is matching.  I used to love a good summer rainstorm, but now it just means that the barometric pressure is low and my P.O.T.S./ Dysautonomia is flaring. 

Today I was supposed to be going on vacation with my family—well, actually we were supposed to leave yesterday, but I was too worn out after a doctor appointment, packing, and little sleep.  So we decided to wait until today.  Postponing plans is always a toss-up—is the crudiness I feel today going to be better or worse tomorrow?  Well, I lost the toss up; it’s definitely worse today, so no traveling is happening in the near future.  I’m hoping tomorrow will be better, but, if not, I’ll send my family on without me—as I have for so many trips the last few years.

We made plans for this trip over a year ago.  It’s only a few hours away, but I haven’t travelled that far by car in the last four years, so it was probably a bit of a stretch to think I could do it.  Of course, a year ago when we planned it I thought “surely I will have improved enough by then to go.” 

Ha!

What is that saying?  “You make plans and God laughs.”  I have definitely learned that my plans are not always His plans, and I believe God has a sense of humor, but I don’t think he’s laughing at me right now.  I’m pretty sure He’s crying with me. 

Living in limbo is so hard!  I feel like I’ve put parts of my life on hold until an unknown time in hopes that I might someday feel better.  

How can I make plans if I don’t know how I’m going to feel a year from now, a week from now, or even a day from now?  Honestly, things can change within minutes.  How can I set goals if I have no idea if I’ll have the capacity to achieve them?  My grand ambitions on a good day generally just glare back at me with a menacing laugh on my bad days. 

At the same time though, how can I NOT make plans?  If I don’t make plans, I don’t have anything to look forward to. Without goals I have nothing to strive for.  But having aspirations can also so easily lead to heartache when plans fail.

Yet, I have to keep hoping and searching for something that helps me feel better.  Fortunately/unfortunately, I subscribe too earnestly to the concept of Hope sometimes.  I have one good day and all of a sudden I find myself making plans for future days that I expect to feel good-- only to realize that my medication didn’t help as much as I thought, my CSF fluid is leaking again, or that something so unchangeable as the weather can control my ability to function.

Sometimes I wonder if I am going to live the rest of my life in limbo— never being able to fully plan, do, or be what I want….

*****

I’m sorry.... This post has taken a much more dismal look at my life than I intended.  So, before I drown in misery (think Alice in Wonderland engulfed in her sea of tears), I’ll stop myself now and try to end my ramblings on a more positive note (because sometimes I have to remind myself of the good things too). 

I was re-reading this talk by Elder Kyle McKay this week, and I love his thoughts on the immediate goodness of God that comes while we are waiting in limbo for the bigger blessings we desire.  He says:

“[God’s] time, and frequently His timing, is different from ours…. But my message today is that, even while we are patiently waiting upon the Lord, there are certain blessings that come to us immediately.

"The immediate goodness of God comes to all who call upon Him with real intent and full purpose of heart. This includes those who cry out in earnest desperation, when deliverance seems so distant and suffering seems prolonged, even intensified....

"God also gives immediate hope for eventual deliverance. No matter what, no matter where, in Christ and through Christ there is always hope smiling brightly before us.  Immediately before us.”

I can testify of the immediate goodness of God.  It's the rainbow that comes during the storm.  It doesn't make the storm go away, but it certainly makes it more bearable.  

Sometimes that immediate goodness comes in the form of:

• An inspired message from a friend
• My husband giving me a hug or making me laugh
• A note left on my pillow from my tender-hearted son (and Puppy Puppy)

• The ability to finally fall asleep after enduring hours of a migraine
• Getting an appointment with a knowledgeable doctor
• Being able to leave the house after days of cabin fever
• Having the energy and ability to help or serve someone else
• A quiet feeling of comfort and peace

Despite the bleakness that living in limbo can yield, and though I can’t always readily feel it or see it, I know that “there is hope smiling brightly before me.”  As I lay here in limbo waiting for the miracle that will heal my body, I can still reach for and feel God’s grace in my life as he sends me the tender mercies and immediate blessings I need. 

Post Script: I wrote this post over a week ago and I’m happy to report that I was able to see some of that immediate goodness soon after!  I really debated going, but I did, indeed, make it on our family vacation!  I may have only left the hotel a handful of times and had a few rough days there (and have definitely had some down days recovering afterwards), but I kept my expectations low, and am just grateful for the time I was able to spend with my family.

Burns and Beliefs: Lessons My Kids Learn from My Illness

In Utah the 24th of July is a state holiday-- Pioneer Day.  A day to remember and celebrate our ancestors and pioneers that crossed the plains to settle the Salt Lake Valley.  In terms of celebration, it's really just another Fourth of July-- parades, BBQs fireworks-- the whole shebang. 

Prior to my illness (autoimmune disorder and POTS), my husband and I loved to entertain.  Our house was often the central location for celebrations, parties, and last minute BBQ's.  But, it's hard to try and coordinate anything these days, as I never know if I'm going to feel good or not.  And, even if I do feel good, I can't both prep for a party AND attend the party.  Even if I just attended, I would still have only have about a 30-60 minute limit, until my body tells me it's done.  This has obviously put a damper on our social life.  And, while that is definitely something that I miss, it is certainly not my biggest problem.

This most recent Pioneer Day (just earlier this week) I was faced again with the crippling reality of the things I DO miss the most.  We opted not to host any parties, just our own small family.  My husband pulled the propane fire pit into the driveway so we could roast marshmallows.  We followed that up with some small fireworks, including sparklers.

My kids, especially my five year old twins, were loving the sparklers.  They were getting especially creative in their ninja fighting stances while wielding the flaming sticks.  We had given them all the safety tips, and they were doing a great job.  Unfortunately, they were in their jammies and bare feet because their parents (mom fail!) didn't have the foresight to have them put on shoes.

I'm sure you can see where this is going….Long story short, part of a sparkler fell and my cute boy, Jack, ended up with a third degree burn on the bottom of his foot.  (I'm now wondering why I have not previously questioned the sanity of  taking a short stick burning at 1000° with sparks flying everywhere and handing it to a young child…)

My poor boy started screaming and shrieking like I have never heard before.  It was awful! 

Now, one of characteristics of my condition is that I overproduce adrenaline.  Noise, light, movement, and stress all contribute to my over-stimulation and adrenaline surges.  Even without provocation sometimes, my adrenaline will shoot up.  When it hits a certain level it actually puts me in a seizure-like state.  I collapse to the ground and start shaking and jerking uncontrollably and become unable to talk or communicate -- often for anywhere from 20 minutes to two hours.  At one point these massive episodes were happening 6-8 times a day.  Fortunately now, with medication and a lot of life modifications (i.e. I never go anywhere or do anything), it's down to a few times a week.   

Well, I was already hitting my limit for the evening when the accident happened.  As you can imagine, I quickly hit overload.  I'm usually the calm one in an emergency, but I turned into a mess.  I couldn't do anything.  I couldn’t run to my son.  I couldn't help him.  I had to rely on my husband to scoop him up and rush him inside, grab some ice, collect his wallet, help move everything out of the driveway so he could back the car out of the garage and take Jack to the hospital.  The whole while Jack was screaming like a banshee.  And, I was helpless.

Not only helpless, but a liability.  My husband could see I was about to crash.  He was worried for me, but had to leave.  He yelled to our teenage son, Andrew, to help me into the house.  I stumbled inside in a daze and somehow made it to my room before crashing.  It was devastating.  Not only could I not go to the hospital with my son, but I had just left the rest of my kids, who had also viewed this traumatic scene, to fend for themselves. 

I could hear James (Jack's twin) upset in the other room.  I couldn't help Jack, and now I also couldn't comfort James or my other children either.   The overflow of stress and emotions did not help my physical situation.  I was so angry-- angry at myself for not making my kids put shoes on, angry at my illness, and angry, once again, that I couldn’t be the mom that I wanted to be-- that my kids needed me to be. 

In the past year, I have grieved a lot over my situation.  I will feel like I finally hit a point of acceptance of my circumstances-- where I am able to appreciate all the many blessings I do have and feel happiness and joy again.  But, then something comes along to regurgitate those feelings of saddness, anger, and inadequacy and I have to fight my way back to peace.

It's been a few days since this incident and I've fortunately been able to regain some perspective.  (It helps that my son is doing well and healing nicely).  I've had a lot of time this last year to reflect on my inadequacies as a mother and wife.  This most recent incident has brought those thoughts to my mind again.  Here are some of the questions I've asked myself and some of my conclusions:

1. Before I was sick, did I always feel like the best mom?  Was I always the mom I wanted to be?  When I look back through my rose colored glasses at my pre-sick self, of course I think I was a better mom then.  But, if I'm totally honest with myself, the answer is no.  I'm not sure that there is any mom in this world, sick or not, that doesn't feel some kind of inadequacy.  For some reason being a mom comes with a load of love and a load of mom-guilt.  I may not be the same mom that I was before, but perhaps there are other ways that I have improved.  I know that I certainly cherish the time I have with my kids more.  I try to take time to listen to them, snuggle with them, sing them songs, and give them hugs-- because those are the things I can do right now.

2.  What will my kids learn to appreciate?  It's so easy to take things for granted when everything remains the same.  You often don't appreciate something until it's lost.  I think I have an interesting perspective because I am a mom that became ill in my mid-thirties, but I also grew up with a mom who became chronically ill in her mid-thirties.  So, I can see both sides.  I know what it is like to have a chronically ill mom.  I remember times when I resented my mom's illness.  I was upset when she didn't come to my vocal competition or a dance performance.  However, I also remember the things that she did attend, and I remember how much more it meant to me that she was there.  I knew it was hard on her and a sacrifice for her.  While I am sure there will be things my kids resent because of my limitations, I hope that somehow this can also help my kids gain a better appreciation for life, for the things we CAN do, and for the sacrifice of others.

3. What are my kids learning from this?  As parents we don't want our kids to ever have to face hardships or trials.  And yet, it is those hardships and trials that mold us into the people we are.  In addition to my current illness, I have suffered from trials such as endometriosis, infertility, post-partum depression and the loss of my mother.  While, I wouldn't choose to go through any of those experiences again if I had the choice, the lessons I have learned from each of them have been invaluable.  I have learned compassion for others that may be suffering similarly.  I have received service and kindness from others that has made me want to serve and show kindness in return.  I have learned to rely on my Savior in times when there is no one else that can help.

So, as I lay shaking in my room a few nights ago with Jack in the hospital and my other children in distress, I later learned that my oldest son had stepped up to the plate.  He took James onto his lap and comforted him.  They said a prayer together that Jack would be okay.  And, he stayed by James's side until I had recovered from my episode and Jack had returned from the hospital.

Despite not being a fan of life's teaching methods sometimes, I'm grateful that my kids are learning about compassion, patience, sacrifice, and many other good qualities that will serve them well in this life. 

I may still choose to be upset about my limitations at times, and I may not like the extra stress it puts on my family and kids, but I have to equally acknowledge that the greatest trials bring about the greatest growth.  So, not only will I learn and grow from my current trials, but I am hopeful that my kids will too.