Have you ever noticed that a natural default setting for our minds is “wake up and worry?”
Lately, I have the feeling that I’m building a Jenga tower, cautiously setting one block on top of another, and if I look away, it’s all going to come crashing down. Of course, this is the opposite of how God wants me to live, so why is it my natural default?
To make matters worse, I find myself justifying this knee-jerk reaction by listing out the events that have “made me think this way.”
March was my 5th surgery related to breast cancer. In June, on our first actual family vacation since Covid, we found out Lauren had thyroid cancer. We then watched our energetic daughter spend her summer undergoing cancer surgery and treatment. In September, my father-in-law got diagnosed with prostate cancer. In October, the university health center called me and said they were sending Ashley to the ER, and I drove 12 hours straight to get to her. Last week, my mom was visiting from England and landed in the hospital. She came home, and the following day my husband woke up with the flu.
And, if that list isn’t long enough, and I need further justification, I catch myself cataloging prior years. Then I tell myself the worry is justified….
No!
It’s not.
This is not the way to live.
But here’s the other thing: did you maybe catalog your own events while reading mine? Did your mind go to your own reasons why living in a heightened state of worry feels valid? Do we all keep a list?
Furthermore, we may even compare our lists – theirs is worse than mine, I could never handle that, I need to toughen up since others have it so much worse, etc. etc.
And, if you are like me, you then feel guilty for the worry. Compared to the tragedies parading before us on the news, ours seem minuscule. So, we add comparison and guilt to our worry. And now we have created a trifecta of defeatism…
This morning, as often happens, I woke up with that “wake up and worry” mindset followed by the inevitable “I shouldn’t live like that guilt,” so I opened my Bible to John 6 and read verse 20:
“It is I; be not afraid.”
And God’s Word instantly hit my reset button. Peace washed over me. Because no matter what the next big thing is, no matter what happens next, God is there. Next to me. With me. Giving strength. His Word provides peace and replaces the worry.
I also find it comforting that the disciples were physically with Him and were still afraid. God is showing us their humanity and telling us there is a solution. The disciples needed a reset, too. Jesus told them, “…be not afraid.” Jesus was with them, and He can be with you, too, my friend.
May your today be filled with peace. May our Christmas Lists be filled with thankfulness. May we make time daily to read God’s Word and feel the peace that is there waiting for us.
It’s been my dream for several years to write a second book. Well, breast cancer inadvertently granted that opportunity, and all those hours of sitting and recovering gave me a chance to write again. And, spoiler alert, my fictional character does get breast cancer because we write what we know…. The Counting Tree Kindle Version goes live in a few hours, and The Counting Tree paperback, a book centered around thankfulness, went live today, on Thanksgiving!
Here’s the book synopsis:
Heidi Richmond isn’t ready to start her prescribed life. So, she leaves her family, fiancé, and everything familiar to work at a youth camp in South Africa. But the culture of 1987 South Africa isn’t what she expected, and she finds herself struggling to adapt wondering if she’s made a colossal mistake. It doesn’t help that the camp’s engaging director, Johann, is antagonistic only towards her. Desperate for success, Heidi digs in and starts to make headway until heartbreaking news from home changes everything.
Fifteen years later, Heidi finds herself at another camp, this time in the United States. Yet somehow everything is familiar and she’s about to find out why.
A charming novel that takes readers from South Africa to the United States over a span of nearly two decades, The Counting Tree is a story of a love that overcomes insurmountable obstacles.
Prior to my double mastectomy I struggled to find cohesive helpful how-to-prepare advice. My searches led me to blogs that told horror stories or to websites full of expensive items. My doctors took care of medical advice, but I wanted an all-encompassing list beyond the standard dos and don’ts prior to surgery. So now, at over 5 weeks post-op, I’ve made a list of the things that helped me the most. Everybody is different, but if I can help another list-loving person and save them from wasting money then I’m happy!
Let’s jump right in:
1.A wedge pillow
You’re going to want to sleep elevated. A family member suggested I rent a medical recliner which is an excellent idea, but I had already bought this wedge pillow and it turned out to be just the ticket. I am a side sleeper but in the beginning I had to sleep reclined on my back and the wedge pillow was so comfy I didn’t have any trouble sleeping (probably also with the aid of #2, #3).
I like the Vitamin Shoppe 3mg extended-release brand – not something you want to take if you have to get up in 5 hours for work, but perfect for post-surgery sleep. Check with your doctor, first, though.
3.Benadryl
My favorite is the Equate brand – it is definitely gluten free. I’ll never understand why an allergy maker can’t guarantee that their product is 100% free of a common allergen but the Equate brand does.
My skin was so itchy from all the bandages and I was petrified I would scratch everything in my sleep and wake up with gaping wounds. So, I took Equate Brand Benadryl until my skin calmed down. And, Benadryl also helps me sleep, so it was a nice complement to #2.
Regarding pain meds, that’s a conversation between you and your doctor. They will have very clear guidelines regarding pain management.
4. A spare post-surgery bra with loopsfor the Dreadful Drains
These not so lovely garments are actually a post-surgery life saver. I now have two, one that I had saved from my prior lumpectomy and the one I woke up in after my mastectomy. They adjust with Velcro at the shoulders, at the front, at the sides where the drains come out and they have loops where you can attach your drains. (Actually, my first surgery, they had cut off the loops since I didn’t have drains, but my clever husband sewed two loops to it because he knows how to Adapt and Adjust).
You can purchase tops with drain pockets and aprons with drain pockets but the two bras with attached loops were just what I needed so I was glad I hadn’t spent money on any of the other drain garments.
5. 4×4-inch gauze and medical-grade paper tape
My skin blistered by the 2nd day underneath the transparent film dressing that they put over my drain exits. Let me just say, pulling that stuff off before it’s meant to come off is no fun. I nearly fainted. But it had to come off. Once we replaced the clear adhesive bandage with gauze held with medical-grade paper tape, my skin started to calm down. The problem with gauze and paper tape is you need a fresh dressing after you shower. So…tell your skin not to react to the clear dressing. But, if it does, gauze and paper tape are the ticket. You will probably eventually need this regardless, though, once the clear dressing has served its purpose and comes off on its own.
6. Cotton strappy fitted tank tops
On the third post-surgery day, I realized that if I stepped into a cotton tank (you won’t be able to put anything over your head at first), I could wear one over the bra and drains. I found that tucking the bottom end of the tank under the drains prevented the drains from rubbing against my skin and held everything in place. It also kept them from swinging while I walked (which could be a good reason to purchase one of the tops in #4) but once I figured this out, I was as comfortable as one can be with four drains.
My favorite drain story goes as follows. My hero friend who has been through multiple kinds of cancer called me one day. “Hey friend,” she started, “are those drains out yet?” Me: “Yes, they are, thank heavens!” (I had originally gone to get them out but I was still producing too much fluid so they had to stay in a couple days extra, which at the time was a Complete Travesty). “OK, then,” she paused, “NOW we can talk about how terrible those things are.” And we laughed and laughed… Another friend told me, “The best way to survive the drains is to remember that they are coming out and count down the days.” That really helped. The discomfort had an endpoint so the present suddenly felt manageable.
7. Button-down tops
I actually bought 3 of these from Amazon but one of them was scratchy and not the same. The other two were lovely. I wore them to all my initial post- surgery appointments and found that if you are in something button-down, they won’t make you change into a gown. Dressing and undressing is so difficult anyway, and the nurses at the doctor’s offices were very good about recognizing I was in a button-down shirt and did not make me change. I would make sure I didn’t have one of my cotton tanks on underneath for those visits.
8. Ad-free spotify membership with preloaded playlists
I had my daughters set this up for me. In these Covid times there were NO hospital visitors once I went in for surgery. This thought petrified me as much as the surgery, so my daughters set me up with Spotify Premium and playlists entitled “Hospital Piano,” “Hospital Worship,” and etc.
I would just like to say, however, that everyone at my hospital was completely wonderful. The kindness and care I received was beyond wonderful. I figured the medical staff would be stressed and frustrated but instead they stepped up and treated me like a family member. I can’t say enough good things about my pre- and post-surgery care at Jupiter Medical Center.
9. Audio Bible
My daughter set this up for me, too. The app is by YouVersion. I knew I would struggle to read post-surgery, so she showed me how to play an audible passage of scripture. Nothing calms the heart like God’s Word.
10. Somebody to stay with you at home for 2 weeks
I was sure I’d be fine after a week. But I wasn’t. Frankly, until the drains came out at day 15, I couldn’t do a lot of things for myself, which was horrifying to my independent self. At first you need help getting up and down, dressing, making food, finding the TV changer…everything. You quickly learn how to do things for yourself (I still don’t bend forward, everything is deep knee bends) but, regardless, you will need someone nearby.
11. A ribbon or lanyard
When you shower you will unhook the drains from your bra and then hook them to a lanyard around your neck. The drains can get wet in the shower, but you don’t want to be holding them and you definitely don’t want to accidentally drop one (that would be horrifying), so hook them to a ribbon or lanyard. It’s all very uncomfortable but just keep reminding yourself that it’s temporary.
14. Comfy outdoor spaceand flowers!
Yes, I know, I live in Florida and I happened to have my surgery during our most comfy outdoor weather. Some of the days were really “cold” (for a Floridian) but I wrapped up in a blanket and sat outside anyway. There’s something therapeutic about being outdoors that nothing else replicates. It also helps with the housebound feeling and most of us have had plenty of practice feeling housebound this past year even without a surgery.
My friends and family know about my plant addiction, so I’ve had lots of beautiful flowers and plants to look at. Each one has encouraged me greatly.
15. Lots of Streaming Services
I couldn’t read at first which felt like a travesty. My post-surgery brain was mush. So, I watched a LOT of TV. More than I have ever in my entire life, in fact. I actually put out a Facebook request for shows and got a lot of good ideas. My favorite movie by far has been The Dig. My favorite suspense was Escape from Pretoria. My favorite series was Queen’s Gambit, although many parts were hard to watch and the foul language was, well, foul. My favorite mindless TV was the first 3 seasons of Gilmore Girls and then the writers ruined it…so I skipped to the last two episodes of season 7 for “closure”. I had DVR’d a lot of Hallmark, but when I found myself thinking things like, “none of those perfect people would ever get their boobs chopped off…” (which definitely isn’t true because breast cancer hits across all demographics) I decided Hallmark-land wasn’t for surgery-recovery me. Of course, there’s always my favorite, HGTV, and it’s available on Hulu if your cable carrier drops it from your plan 😉
16. The reading apps, Cloud Libraryor Kindle
I’ve read enough on the Cloud Library app that it now gives me good recommendations. My favorite book so far has been Dear Mrs. Bird, Please Might You Help? I also enjoyed a couple books by Rachel Hauck and will admit I read Nicholas Sparks, The Longest Journey, where he refreshingly actually doesn’t kill one of the main characters…I do prefer actual books to digital reading but didn’t have the energy for the library so digital reading was the ticket.
17. Tide Pods
Yes, not for consumption. My clever husband set all the laundry stuff on a chair (down from a too-high shelf) and thought to buy the Tide Pods so I wouldn’t have to lift an unmanageable detergent bottle. I was in the mode of wash-one-wear-one because I didn’t want a whole wardrobe of post-surgery bras & clothes that I won’t want to wear after the New Me is complete. It was very empowering (yes, I’m pathetic) to be able to do my own mini loads of laundry. At first someone had to lean over and get it out the washer when it was done but I could do everything else solo and, did I mention I prefer to be independent…?
18. Multiple sizes and types of sleep bras or bralettes for life after drains
The bra thing became a huge problem after the drains came out. I had two each of various sizes and styles for what I had used post-lumpectomy, but I didn’t realize those same bras would NOT work post-mastectomy. After a lumpectomy they want you to constrict everything and keep applying ice. After a mastectomy with reconstruction, they want you to encourage blood flow – so nothing constrictive and no ice.
If you are having reconstruction, try buy ahead and buy a size up so the bands don’t rub your scars. Be smarter than me, though, and keep the receipts and tags in case your post-surgery self has no idea what your pre-surgery self was thinking…I prebought Hanes front-close cotton bras from Amazon, removed the tags and washed them to be super prepared, but they bothered my scars and have been added to my bra distribution pile. In fact, I now have so many sizes and styles around that when someone calls me and says they’re having a biopsy, lumpectomy or now, mastectomy, I can probably deliver something for their use!
Basically, nothing I had on hand worked with my irritated angry skin and my online purchases had failed me. So, there we were, 16 days post-surgery going into every bra department in the mall, me nearly crying every time I asked for help, and it was NOT a good scenario. And then we went to Walmart. I’m not a Walmart fan, but they had so many options and I landed up with these cotton comfy sleep bras that were just the ticket. I splurged and got 3. I wear them nearly 24-7. You can literally step into these to avoid pulling them over your head and making your under-construction sites angry.
So, try buy ahead and save the receipts because shopping at 2 weeks post-surgery is not good for anyone’s emotional stability. Buy cotton and buy a size bigger (if you normally wear a 36, buy 38 etc.). For online searches, type in bralette, sleep bra, cotton, etc. Don’t get too hung up on front-close bras – I found very few out there except for heavy-duty zip-up sports bras and nobody needs body armor right after surgery.
19. A hand-held squeeze ball
I have jokingly named this my emotional support ball. It goes with me on all my walks and is used throughout the day. The occupational therapist gave it to me while I was in the hospital and told me to use it often. I was also given arm exercises by the physical therapist which I’ve followed religiously. And, when they say to do them 3x a day, they mean it. After my lumpectomy I was so afraid of lymphedema that I didn’t use my lymph-node removal arm enough and I developed something called cording, where scar tissue forms a cord and literally prevents you from raising your arm. The cording was corrected after a month of physical therapy, but I wanted to avoid that drama this time.
I’ll do the exercises in the morning and then a few hours later I can feel everything tightening up – which is what happened with cording. So, do those exercises 3x per day. If your doctor doesn’t give you exercises, ask for them!
20. The mindset that 6 weeks off work is there for a reason
After three weeks, I was working on lesson prep from home – I figured that anything I did ahead would make my return to teaching less stressful. But teaching usually requires Olympic-level energy, even more so during Covid times, and when I asked my doctor if I could please go back to work earlier than 6 weeks, at least part time, he had the following welcome advice:
Tissue healing is about the same length of time for all individuals. You don’t heal faster because you are trying harder. In fact, rushing things may cause avoidable problems down the road. You are only going to have to recover from this surgery once, so do it well.
21. Mental preparedness for some surprising emotions
In full disclosure, I have been way more of an emotional wreck than I thought I’d be. My surgery was postponed twice because I got Covid right before my original surgery date. I was thus in quarantine, or at home, for weeks before I finally had my surgery. Then I was at home babysitting my drains and simply surviving the days for two weeks after surgery. Going out to my doctors was fine, they were my people, and they were so kind. But, going to the mall at day 16…that was a disaster. I came to realize that all the isolation and the days and days of pain must’ve done a bigger number on my mental health than I realized. Once my drains came out and my husband was back at work, I had to be super intentional about getting out. So, every day I would set myself a goal: drive somewhere pretty and take a walk (by 4 weeks post-surgery I could actually sort of swing my arms!) then stop at a store. Any store. Walk around. Buy something – a bottle of shampoo, a snack, a boat for my husband (just kidding). Remind myself that nobody was going to jump me or, heaven forbid, look at me funny. I have made myself stay out of grocery stores because I know I would pick up too many things and then not be able to manage once I got home.
And now, three weeks later, I can proudly say, me and the big bad public are OK. (Cue the Rocky Balboa music, please.)
******
And that’s my list. If you are about to have this surgery, let me know and I would love to pray for you. If you are close by, I can probably drop off a few bras or button-down tops for you to try ;). My biggest help outside of my Superior husband and Incredible daughters has been talking with women who have had these surgeries and biopsies themselves, so feel free to comment below.
Last night was a highlight. I watched my daughter who has struggled for nearly two years climb rock walls…over and over again. Then, unfortunately, she told me I had to do it…Now, I’ve spent the last 4 weeks here at the Mayo Clinic’s pediatric pain rehabilitation center (PPRC) pushing her and telling her she absolutely could do everything they required of her. Well, I was scared to death – not of going up but coming down. I had rappelled once as a 19-year-old, off a real rock-cliff thing, in the California desert. It didn’t go so well.
So, Ashley made me go up a few feet and push off to get the feel of the rope. “It will catch you, Mom, you just have to trust it.” She made me try at ever increasing heights until she said I was ready to go all the way up. I couldn’t help but compare this to our last few weeks. Every day at PPRC they would push them to ever increasing heights…tapering her off the wheel chair, mask, nausea medication; increasing her time on the treadmill or the rowing machine and doing strength training; working through anxieties related to pain avoidance; doing a full day of PPRC classes and then “going out” in the evenings for required activities; and the list goes on and on and on. I kept waiting for an easier day, but it never happened. We affectionally termed the program “boot camp for sick kids” and there are apparently no easy days at boot camp.
Many people have asked me to summarize what we have learned here and how they can help Ashley once we return home. So, I’m going to try capture the key concepts of these last weeks at PPRC…
To start out I need to state that the number one goal of PPRC is not to get rid of pain, it is to teach kids to function despite their chronic pain and symptoms. This is completely counterintuitive because we spent the last too many months saying, “when the pain comes down to a ____, we will do ____ again.” So, what’s behind this dichotomy and how is it even safe?
Acute vs Chronic Pain
When Ashley was first diagnosed with pseudotumor cerebri in May of 2017, it was an acute dangerous condition that needed immediate medical attention. She would have a spinal tap which would relieve the pressure and she’d get better. This cycle repeated itself 4 times and although stressful was identifiable and correctible. We were told what signs to look for, the dangers of not treating it (brain damage and blindness) and the necessity for quick intervention. However, after her 5th tap, she didn’t get any better. It was almost like her brain had learned how to have this unique head pain and it was going to hang onto that pain pathway even though the pressure tested normal. They relabeled the headache with multiple monikers which basically told us this was chronic, and we weren’t sure how it was going to go away.
So, what do we do with chronic pain versus acute pain? Well, away from PPRC, we tend to treat it the same! We go to doctors, we have tests, we try drugs, we try therapy, and we rest. Because rest is good for an acute injury or illness…but rest is NOT necessarily the best for chronic pain and symptoms.
Why? Because over prolonged times of rest our muscles atrophy, our lives become smaller, and things often get worse.
So, for us, learning the difference between chronic versus acute pain has been a game changer. You address and get attention for acute pain…not so for chronic. Usually by the time the pain and symptoms have been chronic for a while we get to a point where we have exhausted all means of help from traditional and nontraditional medical interventions. It’s at this point that we are ready to apply a completely new approach. Which leads us to our next principle…
Central Sensitization
The autonomic nervous system is composed of the sympathetic (“fight and flight”) and parasympathetic (“rest and digest”) nervous systems. We have all been in frightening or stressful situations. If a bear is chasing us our heart will beat faster, we will be able to run like lightening, we obviously won’t think to stop and use the bathroom or digest our food – everything in our body is on high alert and we will do everything we can to get away from that bear at all costs. Research is showing that people with chronic illness are more or less stuck in this “fight or flight” mode. Head pain, stomach pain, racing heart, sweatiness, shakiness are all symptoms someone would experience in a frightening situation. Because the body is in a chronic state of physical stress it becomes more and more sensitive to things it used to not notice or care much about: light, sounds, smells, drugs, cosmetic products, clothing, outdoor allergens etc. These are symptoms and experiences of people with something called autonomic dysfunction, chronic pain, or dysautonomia.
Dysautonomia
I first heard this word last February when we were visiting a new asthma doctor. We were noticing that Ashley’s asthma had gotten increasingly worse ever since The Headache turned on nonstop. He did a couple things to induce an asthma attack and then said her asthma was indicative of someone with dysautonomia and there were clinics that could treat it. Well, I went home and looked it up, and none of the sites mentioned chronic daily migraine, so I figured he was wrong. But he was right. Autonomic dysfunction basically means the balance between parasympathetic and sympathetic is way off…which leads to central sensitization…which leads to a highly sensitized individual trying to live in a regular world.
So, what is a person to do? We can’t just take a pill to dial down our “fight or flight” response and dial up “rest and digest.” This leads us to the principles we have learned here at the PPRC.
The PPRC Tool Box
Deep breathing
It sounds so simple and cliché, but true diaphragmatic breathing can turn on “rest and digest.” Kids at PPRC are taught deep breathing and, at first, it is quite uncomfortable for many of them. In fact, they start the kids out breathing this way 10 minutes a day, 3x per day, and tell them to eventually get to where any time they are at rest to make sure they are breathing deeply. A new habit takes about 21 days to form and honestly, the first week or so, deep breathing might feel like a complete waste of time. Trust me, I tried it. At first it made me agitated and uncomfortable. My lungs were not happy with this level of expansion and my shoulders wanted to “come along for the ride.” After 3 weeks, however, I now find I fall asleep faster-in a hotel with back-up beeping snow plows going on for hours outside-and my neck and shoulders hurt less. And Ashley? Well, I’m not sure because I’m not allowed to ask her about her chronic symptoms or talk about something called “pain behaviors”…
Pain behaviors
“The brain learns pain.” Over time, the brain gets better and better at reporting chronic pain. At PPRC kids learn that they are not allowed to think about their pain, talk about their pain, or draw attention to their pain! (Remember, we are talking about chronic pain…if you break your leg, you had better get attention for it!) The brain can change and pain and symptom pathways that have strengthened and formed over months (think of a highway vs. a rutted pathway) can be altered. But, if we continually talk about the pain, get attention for the pain, rate our pain (“on a scale of 1-10…”) those pain pathways remain alive and well. If Ashley, for instance, takes her nausea medication so she can eat, she is essentially keeping that symptom pathway alive and well. If she wears her mask to prevent smells from triggering a worse migraine, she is reminding her body to be on constant alert for smells and keeping that pain pathway alive and well. Now, certain things we do are coping mechanisms and others are pain behaviors. I won’t go into the difference here, but suffice it to say that anything that unnecessarily draws attention to her condition or her pain and symptoms is a pain behavior. And pain behaviors keep that pain pathway signaling. Even if she avoids eating because her stomach hurts, she is keeping that pathway alive and well. But eating well deserves its own category….
Eating to get back to the “set point”
We all have a natural biological set point where we are at our healthiest weight. Now, that might not be Florida-bathing-suit-perfect-looking body weight, but that is the weight where our body functions the best. The doctors here actually look at the kid’s growth charts and see what their weight percentile was when they were healthy. For Ashley, that means she arrived about 15 pounds too thin. So, they start “refeeding.” Many kids present with autonomic dysfunction or POTS (discussed in a prior blog post), difficulties concentrating, peripheral neuropathy, anxiety and depression, and other symptoms simply because they are too far below their set point. Research shows that once they return to their set point, many of these same problems go away!
When we got here, they handed Ashley a food journal and told her to start eating. Our logical response was, “but her stomach hurts.” The doctor smiled and nodded and said, “eat anyway.” She went on to explain that once the brain realizes that you are going to eat despite the stomach pain, the brain will start to dial down those symptoms!
What? What if she has appendicitis, or a stomach cancer and we are ignoring it? The thing is, she actually does have an actual stomach condition but not everyone that has it gets the corresponding pain. So, she is eating anyway. Has her stomach pain gone down? I don’t know – refer to “2”! But she has gained back some weight and the corresponding increase in caloric intake is enabling her to follow the next principle….
Exercise
As you rest your body over months of a chronic illness, muscles start to atrophy, including the heart muscle. Then, when you stand up, there aren’t sufficient muscles to help pump the blood back up to the heart and your poor smaller heart has to beat very fast to compensate. This is POTS brought on by deconditioning and possibly neuropathy and possibly who knows what else. The number one treatment for POTS is, you guessed it, cardio and strength training. Ashley must exercise every day – 30 minutes of cardio and 30 minutes of strength training or active leisure depending on the day. That’s one hour of exercise every day. She can’t take a break from this, she has to strengthen her heart and keep those core muscles built up.
It’s completely counterintuitive to exercise when you feel awful, that’s why PPRC has a dedicated hour per day of physical therapy where they work with the kids to address their unique needs. Now that we are ready to come home, Ashley has enough knowledge and skills to continue this progress.
Sleep schedule
If you have chronic illness, you probably have insomnia because pain and symptoms keep us awake. Plus, if you’re stuck in “fight or flight” your body probably doesn’t know how to rest. Ashley spent a year with increasingly worsening insomnia. I was so worried when we arrived that she would have to show up for her first few days with zero sleep. But, almost instantly, incorporating the principles above, she started sleeping more. No, it isn’t perfect but it’s way better than it used to be.
Teens are taught basic common-sense sleep hygiene which includes
No screens an hour before bed
No phone in bed
Go to bed at the same time every night
Wake up at the same time every day – even on weekends (they are given an extra hour, but that’s it!)
About 9 hours per night. Now, I know you’re wondering how a teen is supposed to get 9 hours with school and homework and…
Moderation
The PPRC principles need to be followed for at least 6 months as we try to dial up that parasympathetic nervous system. That means that PPRC students are told they must initially take a lighter schedule at school, switch to regular classes, add in a study hall, and that they are absolutely only allowed to do 1 hour of homework per night. Now I can hear you freaking out! I used to teach high school, how are they supposed to only get 1 hour of homework per night? Well, with the hour of exercise, the 9 hours of sleep required, the healthy eating, and other requirements, that only leaves them about 1 hour to do homework. I expect Ashley will learn to use her study hall and homework time super wisely…because the nervous system can’t heal if sleep is sacrificed on the altar of homework.
School attendance
If a student has left school due to illness PPRC absolutely requires they return to school at the end of their “boot camp.” That is a frightening prospect, especially since many of the students PPRC sees have become homebound. But school keeps them on a schedule and the goal is functioning on a schedule. They don’t want them to have special academic accommodations unless, of course, they had them prior to illness. They do, however, call the schools and ask for a few health modifications: unlimited water & bathroom breaks, salty snacks throughout the day, and a designated quiet place to use if needed if symptoms ramp up. That’s it.
Chores
If you’re like me, the first thing that goes when my kids are sick is chores. But chores are a life skill. They keep our kids from being entitled. Furthermore, chores tell a chronically sick kid that we believe they can function well enough to contribute to the family. PPRC suggests we list 3 reasonable chores that our kids do as part of their daily schedule. Telling kids they no longer have to do chores reinforces to them that they must be super sick. So, we do chores!
Positive self-talk
Now if you know me you know I’m not a “find-your-inner-self-and-the-spark-of-power-within-you” type of person. However, the Bible clearly states “as a man thinks in his heart, so is he…” We need to encourage our kids to be kind to themselves, to keep an inner dialogue of positive self-encouragement going. If they fail at something, instead of beating themselves up, encourage them to voice where they’ve improved. Tell them continually that we are proud of their hard work, that we notice their efforts. It’s not as much about the outcome as the daily journey towards functioning.
So, have we accomplished our goal here at PPRC? Has Ashley’s pain decreased? Is she cured? I can answer the first question easily: Ashley is functioning 80 percent more (I did the math!) than she did before she came. Has her pain decreased? I’m her mom and I can tell that the answer to that is probably not yet, but we don’t talk about it. Is she cured? It’s a 6-month program. We have completed 1 month of that program and now we need to go home and stick with it.
Many of you have asked me what you can say to help Ashley once we come home. It’s simple, and yes, counterintuitive:
Don’t ask her about pain or symptoms
Don’t ask her if she’s better
Don’t ask her how she’s feeling
Please don’t hug her if you are wearing perfume or cologne
Tell her you missed her
Tell her you’re glad to see her
Ask her about her exercise program or school or the awesome “snowpocalypse” we got to be part of here in MN or…anything but pain and symptoms!
Now back to our rock wall story:
When we got within a few feet of the top I was ready to quit. The floor seemed a very long way down. But Ashley was next to me, “Come on Mom, you can do this.” All I could think was how could I tell her “you don’t need that nausea medicine” or “you can survive that *strong perfume or scented hand sanitizer without your mask” if I wasn’t willing to finish? So, I did. We touched the top and got a plethora of pictures as proof. Then we rappelled down, all the way, together. The rope caught me smoothly, just like it was supposed to. I didn’t die or even hurt myself. It was a blast.
In only 4 weeks Ashley has learned to function again – to the point that she just coached me up and down a rock wall! Today we went ice skating after we tramped through the snow to the grocery store. Actually, today we probably overdid it because we forgot about “6” above. But we have come a long way and we are going to continue to work hard and follow the principles we learned at PPRC this past month. We are obviously nervous to come home and worried about relapse but PPRC has prepared us for all that, too. We are grateful and exceedingly thankful for this opportunity and hope we can use what we have learned to not only recover Ashley’s health but share these basic principles with others because there is hope for chronic illness.
Just over a year ago, Ashley walked into my classroom to tell me she had a headache. I tried to brush away her concerns with, “that’s OK, regular people get headaches, it doesn’t mean anything.” For Ashley, though, I knew it did mean something. Since April 2017, a headache meant days of increasing excruciating pain that would culminate in a spinal tap; such was the life of a child with pseudotumor cerebri.
I told her to take Tylenol and not to overthink it and to go back to class. Maybe this time, I hoped, it would be a normal headache – the annoying kind that everyone gets that goes away.
Well, it went away and we breathed a sigh of relief but then it came back the next day, and the next, and the next. We tried different things – increasing her Lasix (which she had been on for weeks to keep the intracranial pressure down), taking Tylenol, relaxation, blaming hormones or her sudden spike in asthma, and so forth.
The following Monday, she woke up again with the headache and I encouraged her to push through and go to school. I figured maybe distraction would work. I told her C’s were more than fine, we just wanted her to do her best to stay at school. But by the time she was in second period, her teacher took one look at her and told her to go see her mom. She looked too bad to stay in class. This ultimately lead to her fourth tap and three days of relief and then a fifth tap with no relief and the headache has been with her ever since.
The most irritating question we get when we see a new doctor is, “so you are having headaches?” Headaches? We wish! Because the plural form implies that they go away and come back. I get headaches and sometimes lots of them but they do thankfully go away. Ashley has one headache. It does not go away… ever. It will flare like a classic migraine during a storm or when confronted with bright lights or perfume or Febreze or whatever chemically-induced smells us humans decide to assault each other with but it is always there.
Over the last year, in the quest to banish her headache, we have found out she has a growing list of other health concerns (which I mentioned in a prior blog post). In our last trip to the Mayo Clinic, however, we gratefully crossed EDS off that list after seeing a geneticist who very clearly explained why he is 90% sure she does not have any of the EDS subtypes! However, during this Mayo visit we found her iron deficiency persists despite supplementation, she has something called fructose malabsorption, and her abdominal ultrasound shows concern for something called median arcuate ligament syndrome or MALS.
So, she had her first iron infusion, started the fructose malabsorption diet and, after meeting with the vascular surgeon, we have decided – with the blessing of her other Mayo doctors – to wait on pursuing the MALS diagnosis. Why? Wouldn’t we want to know and fix it? Well, the problem with MALS is it is a diagnosis of exclusion. They can only be sure after multiple more tests that the pain she gets after eating is from MALS once they exclude every other possibility. This means more and more tests and medication trials and steroid shots and then ultimately, maybe surgery – which has a high chance of helping but can leave you with life long reflux. Ashley already has reflux and doesn’t tolerate the standard reflux drugs (we have tried 4). So you see our conundrum. Furthermore, people can live with MALS, provided they stop losing weight. We have thus started her on a nutritional supplement called Kate Farms and she is so far maintaining. She needs to be able to maintain and consume enough calories in order to comply with the POTS protocol, which is primarily composed of almost daily strength training and cardio exercises.
While we were at Mayo, they told us again about their highly successful pediatric pain rehab center (PPRC). We visited with a practitioner and, despite initially feeling skeptical, said we would keep it in mind. Then, as Ashley went through the next few days of reacting poorly to more tests and failing another POTS medication trial, I looked at her and said, “let’s stop this insanity and go and tour that pain center.”
The pain rehab center allowed us to walk into sessions that were in progress. Everyone was so welcoming. Teens came up to Ashley and encouraged her, telling her that the PPRC had gotten them doing more than they dreamed possible and highly encouraged her to enroll. I wanted to cry, because suddenly there we were, surrounded by parents and teens living our life. These were people like us, trapped in this chronic pain sludge that puts life on hold and makes everyone involved feel hopeless, but they didn’t look hopeless. It was a shock to me – not only meeting people like us but seeing hope on their faces.
Our next hurdle was insurance. We had recently changed to a new company. I scheduled Ashley for the pain center’s next available opening and they took our information. I then left Ashley in the hospital lobby while I walked into the row of hotels closest to the hospital and smell-tested the rooms. I booked the hotel and plane tickets (with travel insurance) and prayed for insurance to come through for us. I had my arguments in mind if they denied us – did they not know how much all the MALS tests and possible MALS surgery plus the corresponding hospital stay would cost? It would be way more than an outpatient pain program, for sure! Well, it seems our new insurance company is aware of these facts and last week we got the green light to go!
So, here we sit at Ashley’s one-year pain-aversary preparing our Florida wardrobes for nearly 4 weeks in the polar vortex they call Minnesota. Despite our preparations, we wanted to make the one-year mark different – not a warped celebration of The Headache or POTS or neuropathy or whatever other label she has acquired but a celebration of Ashley’s strength and fortitude. We bought Trader Joe’s Gluten Free chocolate cupcakes and Friday, instead of listing her goals for the day and plugging away at them like we usually do, we did everything we could to celebrate strength and blessings. The Florida winter day was gorgeous and we walked by the beach where I snapped this picture of her. The surprise rainbow across her was a beautiful confirmation that God sees and knows.
“Three days before Lauren was born I went to the Texas A&M gym uncomfortable and many days overdue. I walked in and saw a man wearing dress pants and tennis shoes flanked by two men in suits…It was George Bush Sr! His first words to me were, “When’s the baby due?!” He then proceeded to explain to me how Barbara encouraged all 5 of their babies to hurry up. The security guards looked away embarrassed… We cycled next to each other on the exercise bikes and he talked to me the whole time. He asked about Albrey Arrington’s research and I told him about the Rio Cinaruco. He knew right where it was and all about peacock bass. He knew all about everything…including anecdotes about random people who popped up on the tv screens above the bike. He was engaging, interested, and when my 20 minutes ran out on the bike I just kept riding… After Lauren was born I sent him a letter and picture of her. This is the response we received. The signature is fading so we now keep it in a dark place. Notice the date… Thankful to this day for this incredible encounter. A life well lived….an incredibly great man.”
We have all been watching the eulogies and memories pour in of George H. W. Bush. Last Saturday I got out our family’s special memory of this man and put the story on Facebook. Normally I am relatively private on this platform and have my privacy settings on, well, private. However, when I thought of our story, and how it impacted me, my finger hovered over the key and then I “bravely” hit “public.” I watched it nervously for a few hours waiting for the inevitable snide comments and the internet-hate-machine to kick on but it never did. Instead it was as if the letter was a seed that planted a beautiful steady outgrowth of shares and kind comments that I have read and enjoyed and reread over these past 5 days.
On Monday I texted my husband:
By Thursday evening there were over 500 shares and enough likes to have a “K” after the number and my teenage daughters were teasing me about being “viral” and not obeying my own internet preaching. (You know, a parent’s standard “One day you won’t get a job because of what you put on the internet when you were 13…”) But it was the comments that surprised me the most. Each comment has embellished the memory of that special moment nearly 18 years ago. Here are some of my favorites and most of them are from total strangers:
Meagan Gilbert: The amount of stories like this that have surfaced in the last few days is truly eye-opening to how incredible of a man that he was!
Incredible. Meagan, I thought the same thing as I watched the eulogies on TV. So many people talked about his personal letters. My chance encounter and consequent blessing was not isolated…it appears this was his mode of operation. Many have called him the “people’s president” and I can see why.
Joni Funk Bledsoe: What a wonderful man…no celebrity, no pretense just a wonderful man. We should all strive to be like him…Godspeed President Bush
Zero pretense. Yes, we all should strive to be like him. Because kindness isn’t meaningful only when its source is somebody famous. Kindness can change the trajectory of our day.
If you know me, you know we are struggling with my youngest daughter’s chronic illness. A couple months ago we thought that Chiari surgery was our best option. We had just met with a neurosurgeon and I had run into Trader Joes while my daughter was in therapy. My mind was in a whirl and I was convinced the check-out lady thought I was an idiot. Instead she said to me, “Ma’am, are you OK?”
I told her that actually I wasn’t, that we had found out my daughter might need brain surgery. She asked me my daughter’s favorite color and then went over and picked up three beautiful bunches of hydrangeas and put them in my cart free of charge.
“These are for your daughter,” she said.
I’ve been back to that Trader Joes and tried to find her and thank her and to update her on my daughter but I have never seen her again. She changed the trajectory of my day and she didn’t have to be a former president to do so.
Karen Colletti Kibodeaux: He was such incredibly awesome person!!! America was so blessed by this man, in his various roles of service, but mostly by his humble, loving and kind example of what is means to be truly alive
Humility. This has surfaced over and over again in the comments. He had an approachable humility. I think it has become part of the American Dream to become famous….to catch that break that brings us to the proverbial Next Level. But why did President George H. W. Bush resonate with so many of us? Was it only because he was president? No, it was his humility. He had every reason to be proud, egotistical, have a chip on his shoulder over losing out on a second term, be upset about the backlash of his own son’s tumultuous election etc. etc. But instead, as I found out myself, he was completely approachable. Dick Cheney spoke on TV of a gathering where president Bush went up to Mr. Cheney’s 7-year-old granddaughter and said, “I’m the oldest person in the room. You’re the youngest. Let’s talk.” He stated how that impacted his 7-year-old granddaughter. Well, I was the largest pregnant woman in that college gym and he cycled next to me and talked. When I waddled out of the Rec Center that day my shoulders were straighter and my head was held higher.
Greg Cardenas: What a great story. If a former President has the time and attention to devote to such small yet meaningful gestures, there is just no reason we all can’t. Good reminder of that truth.
Time. We are Americans. We rush. We give ourselves just enough time – or a little less for those eternal optimists – to get from one thing to the next. We don’t have time to stop and engage. But the former President of the United States gave me his time and attention and it affected me profoundly. Last night my husband said to me that he had read through the incredible comments and this was the one that stood out to him, too. Why? Because it is something we can all do…we don’t have to be president to devote time to meaningful gestures.
Maria Shelton Dameron: That’s the best part! You did it with a pure heart. And so did he.
Lack of guile. I remember as we cycled we spoke of the contested 2000 presidential election but I unfortunately do not remember what he said. I do, however, remember sadness in his voice and something about “that’s just how people are….” but there was zero animosity. He had every reason to say something negative but he did not.
I have had people from that time ask me how they never knew about this story. Well, I arrived home all excited about my phenomenal encounter and sent an email telling a few family and friends. Many thought it was cool but others did not. They were disappointed in the outcome of the election and their “sour grapes over the election” as one replier put it made me cautious about telling anyone else. Yet, here was George H.W. Bush, a man who had just lived through watching his son being dragged through the political mud, and he had zero animosity.
Heather Fritzel: can we have more of this in the world, please?
Well this week, for those who commented and shared this, we did! We had more of “this” and it has been wonderful. It shows me that there are many people living in these United States who have the power to spread kindness and humanity in the same vein that George HW Bush did while he was alive. There are, indeed, many strangers out there who embody the ideals of our 41st president…and “this” is wonderful.
Deanna Christine: Class and dignity….always in style!!
Vickey Stroman Foster: What a treasure. A kind, thoughtful, gentle man.
Felix Santiago: What an absolutely beautiful moment in time.
My husband and I jokingly tell each other that if a sentence starts with “At least…” then it probably shouldn’t be completed.
I well remember the day after giving birth to Ashley. We were new in the area and didn’t have any family nearby. My husband was a young professor and had to leave us to go and teach his first class. Suddenly the dark hospital room, post-birth exhaustion, and loneliness became overwhelmingly oppressive to me and I found myself inexplicably sad. And right in the middle of this I heard on the news about floods in Mozambique and how rescuers had found a woman who had climbed a tree to flee the rising water and then given birth….She had no nurse call button, clean sheets, doctors, nothing but avoiding drowning and giving birth in precarious isolation. The sharp contrast was inescapable and I immediately felt guilty for my comparative weakness and lack of resilience. At least I was cared for and safe with family and friends phoning from a distance. But did the comparison and consequent guilt help me? No! It made me feel infinitely worse.
During one of Ashley’s hospital stays this past year she told me I could leave her and take a walk. The latest infusion was over and she was feeling relatively good. Our nurses were phenomenal and she told me she was going to call some friends and would be fine. I came back 20 minutes later and she was sobbing. I was horrified. What had transpired while I was pounding out my frustration climbing parking garage stairs?
Turns out a well-meaning friend had called her and had spent the conversation telling Ashley stories of people who were in much worse scenarios then her own…people who were dying, who had died, and who had suffered terrible pain. The implication was if these people could have persevered and braved through their pain then Ashley should too because theirs was so much worse…
We all know that this detrimental type of at least scenario plays itself out through our daily lives and I have often wondered about it. Shouldn’t realizing that we are not as bad off as others trapped in situations we can’t even fathom make us feel better about our own? Why, instead, does it invalidate our own pain and make us feel so terribly guilty?
It wasn’t until a few years ago that I finally heard the best answer to this very question. Kent Annan, an author and missionary to Haiti, was at our school talking about the devastating conditions after the earthquake. As he spoke, the familiar guilt settled upon me as I looked around at the life I was allowed to live. Why was I so fortunate? It was as if he read my mind. He looked at us and said something like this: “You may feel guilty when you compare your lives to the lives of others but that’s not what God wants. He wants you to look around and be thankful for what you have, not to feel guilty for these blessings.”
Finally, someone had answered my question. Because, when we are thankful, we feel lighter. Godly thankfulness and guilt can’t coexist. And, when we are thankful, our perspective changes. We don’t invalidate our own suffering, we simply focus on something good in spite of our situation, and then look outward with empathy towards others and at a very minimum, pray for them. Often this attitude plants a seed of an idea that can later be used productively – whether a gift or a card or an awareness that enables us to think more globally.
Then there’s also one of the most helpful life verses in the Bible: “they….comparing themselves among themselves are not wise.” (II Cor. 10:12) There is a reason the Apostle Paul admonishes us not to compare ourselves: it does not have a positive outcome and it definitely doesn’t lead us to thankfulness.
So what about Ashley and her constant pain and debilitating symptoms? Instead of at least am I supposed to browbeat her into thankfulness…? No! I have learned from the example of wise friends that the single most helpful thing I can do for anyone going through something terrible is to validate their pain. Often the best way this is accomplished is by a simple, “I’m so sorry.” This may sound cliché but I find it powerful. In those three words we recognize and validate the situation and this resonates comfort.
Now when we sit in waiting rooms and see children in terrible distress instead of telling myself at least I start praying for them. I don’t allow myself guilt that our situation is not as bad, I find something – anything – to be thankful for in spite of our own frustrating situation and then I start praying for those around me. Then, at least, my focus has shifted from sadness and guilt to thankfulness.
When peace like a river, attendeth my way, When sorrows like sea billows roll Whatever my lot, thou hast taught me to say It is well, it is well, with my soul
If you haven’t had the privilege of hearing the beautiful hymn, It Is Well With My Soul, written by Horatio Spafford, try listen to it here: https://www.youtube.com/watch?v=jcp6w4zaW7U. To be honest, I couldn’t find a link that quite gave the effect of a church full of people singing but this lets you hear the beauty of the song…
Not Well
I’m sitting in church, and they announce this hymn and my eldest gives me a look of encouragement because she knows what’s about to happen.
I’m going to cry.
Right there, on the stage, waiting to play the piano for an upcoming choir song, I’m going to cry.
So, why? Why would a song that starts out with “When peace like a river…” do this to me?
I know the back-story to this song. Many of the Great Hymns have incredible origins and this one is no different. As the story goes, Horatio Spafford, a Chicago business man had recently suffered through not only the death of his son but also, like countless others, great loss from the Chicago fire of 1871. He put his wife and four daughters on a steam ship bound for France with the plan to join them shortly. Not long after, however, he got word the ship had gone down. Nine days later he received a cable from his wife, Anna, with these six words: “Saved alone. What shall I do?” Mr. Spafford boarded another ship and while on the Atlantic crossing, the ship’s captain told him they were passing the probable spot where his children had been lost. Above his children’s watery graves he penned the words to the song…
Emotions are funny things – they are rarely all of one single type. So, when I hear the opening refrain to “It is Well…” I don’t necessarily want to cry only due to sadness because that would be relatively noble and people could be sympathetic. No, unfortunately I’m also angry and frustrated and mortified too.
Angry? Now if you are a super Christian, you are about to be disappointed in me. Because when the song starts, I kind of want to stand up and say, “No! It is NOT well!” Wouldn’t that be a great show? I might just lose my spot on the stage and be asked to take a leave of absence from accompanying the choir and I wouldn’t blame the powers that be one single bit!
Frustrated? To be honest, before my daughter got sick I really thought I was better than these knee-jerk mental responses I find myself fielding. Life, however, has a way of illuminating parts of ourselves we never knew existed. I mean, who, in the middle of a beautiful song really would think of standing up and shouting anything negative?
Me.
Mortified? Ashley’s illness has been going on for so long, surely by now I should’ve learned to get my emotions under control? You know how we unfairly expect people who have lost a loved one to be over their grief by some predetermined time? Well, I’m learning grief and time don’t exist in the same continuum. Grief can hit by surprise at the strangest times and be triggered when we least expect it. Unfortunately for me, I am fully aware “It is Well With My Soul” is a guaranteed personal trigger.
So, obviously I don’t stand up and yell. And, since I want to play for choir, I control the floodgates in order to read the music and not ruin my mascara. Besides, I know if I sit there in anger and frustration, God can’t use me.
My sin, oh, the bliss of this glorious thought My sin, not in part but the whole, Is nailed to the cross, and I bear it no more, Praise the Lord, praise the Lord, o my soul
You know, I suspect Horatio Spafford felt anger over his unimaginable loss. Otherwise why would he write about sin in the same song that is all about experiencing God’s peace? Maybe Mr. Spafford realized he, too, had responses to his grief that he needed to confess to our all-loving Heavenly Father.
Though Satan should buffet, though trials should come, Let this blest assurance control, That Christ has regarded my helpless estate, And hath shed His own blood for my soul
Then there is this verse. God knows my “helpless estate” and this knowledge brings me to think of what God’s peace really is. It is not a peace from relief – the relief we get when the bank account is full and the test results give hope and our kids are healthy and we get a job. It is not a peace based on circumstance at all….it is an inexplicable Peace in spite of circumstance.
But how? Because God doesn’t promise us perfect lives, He just promises us He will be there for us. I can sit there and rest in the fact that God sees and knows and understands*. I can give Him my anger and frustration and ask Him to fill me with His Peace. And then, He does. It is an inexplicable, beautiful thing and makes me want to cry more – this time with relief. But then I’d still be crying. So, I sit there and allow His Peace to wash over me and wait for the song to end. My daughter gives me one last look of encouragement and we both know I’ve survived the song one more time.
It is well (it is well) With my soul (with my soul) It is well, it is well with my soul
I’m a planner….and there is nothing about these past 18 months that have been planned. 18 months ago we never knew when Ashley started one of her frequent sinus infections that it would set off a cascade of events that would change everything. But it has and it did. And now, each day, I wake up not knowing what to expect. Will a few math problems catapult her into a 3-hour pain flare? Will another dr. call with plans for another test? Will another bill arrive that insurance should have covered? Will another scan get lost in transit? I don’t know.
The way I do life is to plan, work hard, evaluate, plan some more and work even harder. That’s how my brain functions. But this life involves sitting and waiting….waiting rooms, waiting in traffic, waiting through a pain flare, waiting for a moment of relief.
There
is
no
plan.
There is no answer. We spent 11 months chasing pseudotumor cerebri. It appears now that pseudotumor started everything but is no longer our culprit. Then we spent 4 months chasing Chiari I malformation. There is a surgery that can fix that and after throwing up in the ICU for 3 days and spending 3 weeks in post surgical pain you can get better. One neurosurgeon said this surgery “might” help. Three others said to avoid it. In the meantime Ashley was diagnosed with everything…..POTS (tachycardia related to position), peripheral neuropathy, fibromyalgia (like I told the doctor, are you sure? She’s 14!), gastritis, esophageal narrowing and more. And we are waiting on more possible diagnoses….16 vials of blood drawn over two days are still pending. Another tilt-table test and an endoscopy are next week. I keep thinking, let’s stop the madness and stop the tests but then, what if the next test gives us our answer?
We now appear to be chasing something called Ehlers-Danlos Syndrome, a disease that affects the connective tissues. On one of my many research binges (I do believe I’ve read every relevant Chiari paper accessible to ordinary humans) I watched a video by a Chiari/EDS expert who cautioned the doctors in the room that “if there are many issues, blame the tissues.” Is this it? Is this the culprit? Well, I’ve read about the various EDS sub-types and I just don’t know. But we’ll chase this because we want answers. At the end of the day, however, our sweet daughter could have something that will never have a title. I told her, if so, we’d name it ourselves. It doesn’t mean she’s not sick, it just means that there is no answer.
“Push through the pain.” This advice comes through and sometimes not so subtly. Please don’t ever say that to a sick person….unless, of course, you have the ability to walk through a brick wall. My daughter rarely complains. She has been in unremitting pain for 9 months straight now. I have only heard her truly complain twice….let’s think about that. I get a headache for 2 days and in the 2ndhour of it I’m complaining. And how do I mentally get myself through that headache? I tell myself it will be gone tomorrow, or at least by the day after.
“Maybe it’s all in her head.” I told our pediatrician that yesterday….that people sometimes imply this and he laughed! Psychological problems don’t cause these diagnoses, he told me. I know that and he knows that but we all want to provide solutions for others and depression is such an easy culprit. We like to tell her that we’ve had a headache or a backache or felt dizzy or been sick to our stomachs or had joint pain but despite that we forced ourselves to hike up the difficult side of Mount Everest. Why? Because we are noble and strong and by comparison, you, Ashley need to be noble and strong, too…..
But for you naysayers, who say depression or some weird desire to stay sick has caused this let me tell you what happens when my child gets a tiny window of lowered symptoms: she starts making plans, telling jokes, asking to do things….. Yesterday, after one of our failed attempts at schooling (some days it is just not possible) she said, “Why would I do this on purpose? Why would a kid who loves to learn prefer to be in this much pain instead of sitting in school with their friends?” Then I realize that people who think this way don’t really know my sweet, brave, resilient child.
We are now in our third rat race….pseudotumor cerebri, then Chiari I malformation and now possible EDS. We’ll run through this maze for awhile and then….I don’t know. Writing has always helped me mentally but I’ve avoided writing about this – it’s just too deep and personal. Watching helplessly as my child suffers illuminates my flaws and shortcomings and challenges my beliefs. But, for now at least, I’ll expose those feelings. I’ll revive this fledgling blog that teaching put on hold. Maybe it will help something…maybe it will help someone. At the very least it will give me a plan that I can execute.
Three days ago I finished Words Unspoken, an outstanding book by Elizabeth Musser. In fact, it was so good that I can’t stop thinking about it…the way she wove her characters together, the way she kept the reader guessing, the way her words flowed, and the way she made me want to read all her books. In fact, yesterday I placed on hold every Elizabeth Musser book in my county’s library system.
In my mind, Ms. Musser now sits on a pedestal with three of my other favorite authors: Angela Hunt, Lisa Wingate, and John Grisham. Now I know you may be surprised by John Grisham since his is a completely different genre, but these writers all share one common thread – well researched, keep-me-reading, superbly written books. In fact, I don’t know how they do it. They have something that my love-to-write self just doesn’t quite possess. It’s the difference between a good pianist and a concert pianist, a good tennis player and a pro tennis player. (I use these analogies because I am a pianist and I love to play tennis. Yet, I know there are levels upon levels of expertise above my own abilities.)
But, I also love to write. In fact, my psyche requires me to write. Writing anchors me, fills me with purpose, makes me excited to wake up and start my summer days.
Unfortunately a sad thing happened the other day after I finished Words Unspoken. I concluded that since the books by my favorite authors are so many levels above my own attempts, I needed to quit writing my latest story. A story, by the way, that has been ruminating in my head for at least the last four years. (The words in my head, therefore, would ironically remain unspoken.) Nothing, my logic told me, is worse than a poorly written book, and there are already way too many of them out there. I figured there was no need for me to write one more.
So, for two days I didn’t write. The first day after allowing this destructive thought pattern to take hold, I wrote five words and shut the computer. The next day, I didn’t even try. This morning I woke up, missing my story so badly but yet convinced there was no point and “happened” upon I Thess 5:24. “Faithful is He that calleth you who also will do it.”
I couldn’t get past that verse. I thought of my piano playing. I know I am not a concert pianist but I sure love playing the piano. Whether playing preludes, playing the great hymns, or accompanying the choir, it all fills me with thanksgiving and joy. Yet, when a visiting pianist comes to our church and blesses my heart with concert-level music, I don’t quit playing the piano. So, why did I think I had to quit writing?
God has hardwired me to write. It doesn’t necessarily mean He is requiring me to be a “concert author,” He simply created me with a need to write. I am happiest when I am writing. So, today I will go back to my book, back to those five neglected words from two days ago, and back to solving my characters’ problems.
If I ever feel it is good enough, I will publish it. If not, I will save it for my daughters. But, regardless, today I can say:
Last night was a highlight. I watched my daughter who has struggled for nearly two years climb rock walls…over and over again. Then, unfortunately, she told me I had to do it…Now, I’ve spent the last 4 weeks here at the Mayo Clinic’s pediatric pain rehabilitation center (PPRC) pushing her and telling her she absolutely could do everything they required of her. Well, I was scared to death – not of going up but coming down. I had rappelled once as a 19-year-old, off a real rock-cliff thing, in the California desert. It didn’t go so well.
Candid Chats by Jennifer Arrington 