Do you remember the song from Disney’s “Alice In Wonderland”? Where Alice bemoans the fact that she gives herself very good advice but very seldom follows it? Well, I’m feeling a lot like Alice these days-not following any good advice and wanting to get the heck out of this crazy place called Wonderland. And I’m willing to take out the white rabbit or the cat if they try to stop me.
All I wanted was a referral to a new neurologist. My old one was a twit. I didn’t even really NEED a referral, but since I hadn’t been to a doc in a year and my kids’ chronic health issues were pretty stable I decided I should go get a check-up. Little did I know I was to trip and fall into a looming abyss of a rabbit hole and end up in my own personal “Wonderland”- full of odd things I don’t understand- where something unexpected lurks around every corner.
So here I am…most of my summer booked with different specialists, three new medications whose administration takes more planning than a special forces maneuver, and now phone calls cause me to panic that my small town’s version of House (albeit much more pleasant) might be calling with some other tidbit of medical knowledge to keep me up at night.
I know that God is bigger than anything that’s wrong with me. I know He knows the plan He has for me. I know that wallowing in pity accomplishes absolutely NOTHING. I know Wonderland had singing flowers, eccentric caterpillars, and a really weird cat. The Walrus and the Carpenter were pretty cool too if you weren’t an oyster. I know all this….but Wonderland has a dark side. There’s those creepy and annoying twin things, and the Walrus (who eats the sweet little oysters), and the darn caterpillar who you can’t get a straight answer out of for ANYTHING!!!
Having an autoimmune disease is a lot like having your own Queen of Hearts running amok in your body yelling “Off with your head!” to your various body systems, changing her mind what color the roses are (or which part of your body is actually going to function normally today). One medicine says “eat me”, one says “drink me” and the results feel just as varied and staggering as growing to the size of a house or shrinking to the size of a keyhole. It’s a crazy ride and frankly leaves you clawing frantically at the dirt as you try to climb back up the rabbit hole you’ve fallen down.
I haven’t felt very inspirational. I have no words of wisdom….I can’t even seem to follow my own advice from previous blogs. But as a good friend pointed out tonight- sometimes everything doesn’t have to be upbeat….just real. So that’s what you’re going to get. Real. Sometimes laughter, sometimes tears. After all, the cat with the great teeth famously said, “We all go a little mad sometimes”…
While I deal with the fact that there was a lot more wrong with me than I thought-that I may have hit the autoimmune jackpot of having more than one of the little buggers-I don’t have to feel guilty about or hide the fact that this really sucks. I’m bummed. I’m scared. I don’t always feel like writing about climbing mountains, defeating dragons, or keeping calm and carrying on……because I am at the bottom of a very odd, deep little rabbit hole, trying to get answers from a stoned caterpillar, and trying to stay one step ahead of the crazy Queen.
Sometimes it just seems like nothing goes right. That your parade of daily adventures seem to be taking you down a road that serves no purpose but to provide entertainment to the universe. When every moment of the day goes so horribly wrong that you actually start to laugh (a verge-of-a-nervous breakdown laugh..not the good kind). When everyone else seems to have it together and if it can go wrong it has…I know you’ve been there…
I’ve been there too. I used to ask WHY a lot…Why can’t either of my children be “healthy” or “normal”? Why did I get played the crappy health card? Why does no one ever offer to help me when they bend over backwards for so & so? Why don’t I have it all together like______ (insert the name of your born organized, not a hair out of place, Stepford wife with her Better Homes and Gardens house and 2.5 golden, perfectly dressed and behaved, adorable children-here)? How do all these other women have nutritious, gluten free dinners on the table by 5 every night, their houses clean, and still (even want) to have “quality time” with their families instead of hiding in the bathroom hoping no one will find them? Why can’t the puppy just this once leave my shoes alone…
I really identify with the e-card going around that says “All these moms are on Pinterest making their own soap and reindeer-shaped treats, and I’m all like “I took a shower and kept the kids alive.” If I had a mission statement for my job as a homemaker and mother it would be We’re all still here at the end of the day….pets (and cabbage) included. In fact, for a while that was actually how I measured the success of the day because in the past things have actually been THAT bad.
But the truth is that pity parties don’t actually accomplish anything. They certainly don’t make us feel better. They don’t change anything that’s happening to us. Pity parties just cause you to stall out in the depths of the circumstances you find yourself in. Feeling sorry for yourself keeps you from moving forward and doing something, anything, to improve the situation. When you find yourself in the midst of saying “poor me” and “no one understands what I go through” take a look around. It isn’t very hard at ALL to find someone out there who has it worse than you do.
Make a list of your blessings-and yes, there are ALWAYS blessings for you to list-even if it’s just being thankful that you woke up and are breathing (remember my mission statement from above?). Get up and DO something. Anything. Idle hands give you too much time to dwell on yourself and your problems. I am a firm believer in the statement “Work will set you free”. Set a timer for 15 minutes and do something. Clean something. Bake something. I have a chronic health condition that affects my mobility among other things….I am a firm believer in move it or lose it~an object in motion tends to stay in motion. Keep moving.
Every day is a new day. Most of the time I feel better about something after sleeping on it. When the doctors thought my daughter had lymphoma I was a emotional wreck. I tried my best to hold it together for her, but didn’t do an awesome job at it. It took a couple of nights to wake up feeling “better” enough to get up and say what are we going to do about it? Action makes you feel like you are in control, not being controlled by your emotions, situation, others, whatever.
I wouldn’t trade my children for anything. I did however ask a doctor one day in the midst of a pity party, “why couldn’t I have a normal child”. I now realize how incredibly boring that would be (and yes, I know there’s no such thing as normal), but the doctor said something that really stuck with me. He replied, “Because God knew you were the best person to take care of them“. Instead of dismissing his words as a platitude, I really thought about how things had worked out in our lives. My daughter’s JRA has many symptoms similar to my autoimmune issues…who better to teach her how to budget her time (or spoons in the autoimmune illness world) and cope with the struggles of fatigue and pain? Then there’s my son, whom God brought to us from the other side of the world? Knowing, even when we didn’t, the challenges he would face as he grew from infancy? What a humbling revelation to think that God thought I was up to the task of being given these precious children.
Yes, there are times I fail to see their preciousness. Yes, I am just as guilty of blowing up the balloons and setting out the decorations to throw a pity party-to-end-all-pity-parties when life beats me down. There are days that I feel like I have been a contestant on the show “Wipeout” and I just can’t take one more hit. But I don’t stay down for long. There is always something to be thankful for. Everything has a reason. Everything that you go through makes you who you are. You can’t always control what happens to you, but you CAN control who you are when you come through. Many times people have told me, “I don’t know how you do it”. First off, I don’t. God does. There are countless time I am amazed to still be putting one foot in front of the other and I know that it’s only by God’s strength that I’m not in bed unable to function. Another reason is if I don’t think that I can’t do something…then I can do it. That and the fact that I believe that you always get back up and keep moving-it’s not about wanting to, it’s about not having any other choice.
In the famous words of Vince Lombardi, “It does not matter how many times you get knocked down, but how many times you get up…..”
Another favorite of mine is “They say that what doesn’t kill you makes you stronger. At this point I should be able to bench-press a BUICK.”
Throw out those party favors and do something positive!
For more information about the “Spoon Theory” see http://www.butyoudontlooksick.com/wpress/category/the-spoon–theory
My son has autism spectrum disorder along with being hearing impaired and having epilepsy. He is a sweet-natured, brilliant little boy who continually provides excitement to my life. Honestly, never a dull moment. When he brought home a scrawny little cabbage seedling home from school it was like someone had given him a new puppy. I was reminded repeatedly that we had to plant it right away or it would die. Now, I have never grown anything in my life…I can’t even keep houseplants alive…and here was this little cabbage with SO much riding on it. As we all know, nothing is really “free” and after purchasing the largest container I could find (this was a megacabbage), garden soil, a watering can, plant food, gloves (do you know what they PUT in garden soil), and even a little gnome to keep watch, we had spent a nice amount of money in this gardening venture. Following the two sentences of instructions on the pot, Seymour the cabbage was planted.
At this point even I was invested in this little plant. Each week we counted leaves, watered, fed, and watched as he grew a few leaves at a time. After 8 weeks the scrawny little cabbage seedling had grown into a 3 foot diameter monster. My son had lost some of his interest in gardening, but not me. I was so excited that not only had I kept the plant alive, but it was thriving and doing what it was supposed to do-a rarity around here. Of course it then developed not one, but two heads (nothing can be normal at this house)…that’s when disaster struck.
The heads were not growing as fast as they should and some of the large leaves began to yellow. Due to the quickly rising southern heat it was requiring a gallon of water a day to keep it from wilting. I was feeding, watering, rolling it in and out of the garage during inclement weather (we used a skateboard underneath as it was now too heavy to lift), and singing the song from Little Shop of Horrors, “Please grow for me”. I read that sometimes you have to remove the lower leaves so that they don’t steal nutrients from the heads. Hack up my precious??? Never! (Insert my Gollum impression here) Then holes appeared on the leaves-there were caterpillars-I had to take action.
Armed with my scissors and insecticide I went to save Seymour. I carefully picked off all the caterpillars (who would not be eating anyone ELSE’s cabbage ever again) and picked up my scissors. As I started to cut off the big leaves around the base, leaving only the ones that surrounded each head, I was reminded of the story in John 15 about the vine of life. “He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful.” (John 15:2)
It was like God was speaking to me in the midst of all my cutting, and spraying, and caterpillar stomping. Just as I was “pruning” our cabbage to help it be more fruitful, to cut away the bad parts so that it was stronger-I believe that God prunes us as well. Sometimes the things we face in life occur to make us stronger. When we’re tested by the fires of our difficulties and come through, we are forged stronger than we were before…and sometimes we need to prune away the things that holding us back from being our best. Maybe unhealthy habits, toxic people, negative thoughts, maybe even our own attitudes are holding us back from growing, like the extra leaves were robbing the head of what it needed to grow. Maybe by doing a little pruning on ourselves, and removing these things from our lives, we save ourselves and become stronger, bigger, better. I know that while I am rarely thrilled at the trials life throws at me, I have become a better, stronger person because of them. Amazing how God can speak through cabbages and caterpillars.