On Mortality and Faith

My mom, sister and I traveled four and a half hours both ways yesterday to visit my grandparents in upstate NY. We usually stay the weekend, but since I’m allergic to their home (it’s generations old and has goodness only knows how much mold and mildew) we stay overnight in a nearby bed-and-breakfast and join them for church the following morning. However, this weekend was move-in weekend for all the community colleges up near my grandparents, so my mom couldn’t book a room! Who would have thought that there would be demand for rooms in the middle of nowhere?! (And I really mean the middle of NOwhere – the closest things to my grandparents’ house are cornfields, an Amish farm, and more farms. We have to drive 15 miles to find coffee.)

So my mom drove a total of 9 hours yesterday so we could visit her parents (bless her heart).

My grandparents are a shadow of their former selves. They would periodically travel to visit us in Massachusetts when I was growing up, and I remember them napping on our sofas after their long drive, only to wake up and be ready to engage in the witty banter my mom’s family is known for. My grandfather would be the only one bantering, since my grandmother has never been fully “with it” according to my mom, but she would laugh dutifully and add her own one-liners, her hand on my grandfather’s knee and a twinkle in her eye.

My grandpa is going on 93 and my grandma 89; my mom was born when my grandma was in her forties, so I’ve never had young grandparents, which makes this so much harder. They have both have been hospitalized this year for dehydration, and are now both walking with some kind of assistance – a walker for grandma, a cane for grandpa. Grandpa has always been the caretaker for every ailment Grandma has suffered, but now he struggles with being unable to move fast enough to provide for her. Grandma re-told the story of Grandpa’s fainting earlier this year to me and my sister, saying, “I shook him and told him, ‘You can’t do this! You have to stay here to help me!'” I nearly cried.

They’ve been married for over 60 years. They have been through wars (my grandpa was a pilot in the Army Air Force), raised four children (my mom is the youngest of 4 daughters), and have met five great-grandchildren from several of their 13 grandchildren. Their love is tangible.

They look at each other and savor each moment together, realizing that they may not have many more of them. My grandpa has lost 30 pounds in the last 6 months, and my grandma’s heart can’t pump enough oxygen to her brain for her to remember which pills to take to keep it going for another day.

Their time on earth is limited, I know that. But I also know that what is waiting for them will be so much brighter, and I know that they are looking forward to it. They taught me what pure, unadulterated faith is. Their kitchen is filled with Bible verses on ceramic tiles, crocheted on potholders, embroidered on hand towels, and they pray before every meal. At each of their respective “stations” on the well-worn couch and arm chair, a Bible sits open to that day’s devotional verse, highlighted and peppered with notes in shorthand (my Grandma’s) or scrawling cursive (Grandpa’s).

It’s not that they declare their love of God for all to see, because even Matthew 6:6 has its place on a potholder (“But when you pray, go into your room, close the door and pray to your Father, who is unseen. Then your Father, who sees what is done in secret, will reward you.”). Instead, these verses all over the house serve as a constant reminder to my grandmother in her ailing memory that she is loved, cared for, and protected by the Ultimate Father. And when they are in pain or frustrated with their loss of mobility, they have a quick reminder of God’s protection and grace.

That’s comforting to me. That when they are gone, they will be with their Heavenly Father. It provides more than simple relief. It’s abiding peace. And on earth, His Word provides them (and me) with that same peace and comfort, despite daily battles with incurable pain. That alone is incredible, and something for which I am so thankful.

And when the conversation on the ride home turned to my sister’s atheism and my mom’s annoyance with organized religion, I silently prayed that one day they will be able to look back at the faith my grandparents demonstrated through their never-ending love and devotion to each other and to God and decide that they can accept God’s love for themselves. I pray, I pray, I pray.

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A Letter to my Eight-Year Old Self: Thursday Faith Jam

My Dear Rachel,

It’s me, your 20-year old self (and if you’ll notice the date, I’m about to turn 21! I remember when double-digits was the milestone to live for…it’ll come soon enough, and in the meantime almost-nine is pretty great too.). I didn’t realize how much I would miss you!

I do, though, so I’m back – here to offer some words of advice about faith, love, and Christ.

You still fall asleep praying, right? Keep doing that, you’re doing it right. “Pray without ceasing,” 1 Thessalonians 5:17 tells us, and you’ve got it down. Don’t worry about getting on your knees or folding those hands – God hears you wherever you are, and praying is one sure-fire way to keep the bedbugs from biting. I know you worry about praying “right”, using the right words, the right tone of voice, at the right time of day, but you really don’t have to. God will listen no matter what. If you still feel self-conscious about praying though, pick up that “My Prayer Book” (you know, the little red one in the rolltop desk? It was Dad’s when he was little and he’ll let you use it) and flip through it. You’ll find some really cool ways to ask God for help.

Singing “Hide ‘Em in Your Heart” songs at the top of your lungs is a way to praise God – keep doing that! You’ll remember those songs for the rest of your life. And guess what? You don’t have to worry about having our many Hide ‘Em in Your Heart tapes changed into CDs for your future kids (don’t even roll your eyes, you’ve been worrying about that since you got your first CD!) – they will be online a long time before you have children of your own to share them with (and since I found them on Spotify, I’ve belted out my fair share of Galatians 5:22 and 1 Thessalonians 5:11; they never really left my heart).

Love your body. You have a beautiful young body, and don’t let Alex tell you otherwise in fourth grade (you’ll be in double-digits by then! Congrats!). Remember that God made you in His image and you are perfect just the way He made you, regardless of how fast you have to switch from a training bra to a real bra. Step away from that mirror, stop zeroing in on your pores, and get out and play!

Keep dancing and believing you will be a ballerina with all your heart. I’m not going to spoil anything for you, but just know that some day…some day your body won’t work as well as it used to. You’ll adapt, you’ll move on, and you’ll be just as happy, but take the time now to dance your heart out. Dance like no one is watching, Rach.

Actually, I take that back. Dance like only Jesus is watching, and let that comfort you all the way through your life.

On that note, it’s ok that sometimes being a Christian won’t be as comforting as everyone says. That doesn’t make you a bad person, it makes you human! It’s ok to ask hard questions about God and the Bible, and it’s ok to not believe everything Pastor Wendy says just because she’s the pastor. In fact (you’re going to love this), God wants us to ask questions and test out His Word for ourselves – it says so in Romans 12:2: Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.Proverbs 3:5 ends: “…never rely on what you think you know.” See? I’m telling you, you’re doing this Christian thing right. I know you do your best to abide by God’s commandments and I know that sometimes it’s harder to do the right thing than others, but God has given you a really good sense of right and wrong. Even when you feel as if you don’t belong, you are still a child of God. Jesus is watching over you and loves you. Just keep talking to God, listening, and reading His Word – stay curious! God will give you the answers, I promise.

Now if you do that, I’ll be in a different place, and I’m ok with that! I’ll let you in on a little secret: for a long time, I lost touch with Christ (oh, don’t worry – you’ll soon have a great Sunday School teacher who will explain the Trinity because you will raise your hand in front of the entire church and ask about the difference between the Father, the Son, and the Holy Spirit. Don’t cry when people laugh! [but it’s ok to cry, even when you’re big!] They only laugh because they wondered about that too and remember how wonderful the answer is. You’re not alone.). I lost touch with Christ because I couldn’t get in touch with Him for one reason or another. You’ll soon discover that Mom and Dad are humans too, and that their faith is not as rock-hard as you thought, and that will send your world spiraling. Please try not to let that discourage you, and just keep reading your Bible and praying unceasingly –  that would make me that happiest gal in the world (ok, that was a teensy spoiler, but it happens soon anyway).

I’ll make a long story short: college comes and you miss church, so you join the church choir and pour your heart out through song. Not long after that (a few weeks ago my time, actually), you’ll finally get back to praying until you fall asleep and God will speak to you in the most remarkable way. It makes my heart soar just thinking about it. And now I’m back, you’re back (because trusting God to guide you is a lot like being eight years old again – I am His child, after all!), and I’m truly, truly happy. I am blessed and guided and humbled.

One more very, very important thing: Turn all your worries over to God. He can handle them much better than you can, believe me, and it’ll save us both a lot of heartburn if you stop worrying in favor of letting God take over. 

I miss you, but I’m remembering how to be like you more and more each day.

Love,

Rach

P.S. Please don’t tell Ab that sweet peas are edible…

What I’m Working On: Simple Solutions

Brace Covers

As you know, my elbow pain has been causing me some serious strife here. I’m unsure what is going to happen next, but today I let go and went on an excursion to begin beautifying my very conspicuous, not-so-attractive braces.

I went to my very favorite place (aside from the bookstore, the library, and the coffee shop, of course): the fabric store! My mom taught me how to sew when I was very little, and I am incredibly grateful that she passed down her 4-H wisdom to me! (Quick confession: I dream of living in the country so I can send my future children to 4-H and we can cook and sew together! So idyllic, so calm, so homey…ok, back to suburbia we go!)

I picked the three fabrics pictured above: the left is a subtle zigzag pattern on a faded-denim color knit, the middle a happy pattern with coral, yellow, and brown, and the right a very stretchy turquoise, coral, and green polka dot. I’m planning to make two brace-covers with each fabric so I have one for each arm.

When I was wearing a short-sleeved shirt yesterday, I noticed that the space between the end of my sleeve and my brace was uncomfortably obvious, so these covers will have a ribbon to attach to my bra strap with snaps and will tuck right under the edge of any short-sleeved shirt for a comfortable, patterned solution!

I hope to have at least one set finished before I go to school, so I’ll post the finished product soon! I’m excited about this solution.

Ergo Workstation on a Budget

I’m currently working from my permanent residence before I go back to school, and I like to be around my family while I can. Growing up, I always did all my homework at the kitchen table, and my mom’s watercolor workstation was right across from my seat. It has always felt like an inspiring place, and when I get writer’s block or suffer from the dreaded curse of procrastination at school I frequently turn to my roommates and ask if they wouldn’t mind squishing our very own kitchen table in the common room. It’s where I do my best work!

But that also means that I’m sitting on kitchen chairs without a keyboard lift, ergo arms, or anything else I’m supposed to use when I work! So I’ve devised a couple quick fixes for a lack of ergonomic comfort until I return to the dreaded dorm desk:

This back support was $10 at Target, and it keeps me upright and without lower back pain for quite a while (or at least as long as I want before I get distracted!). I’ve clipped it right on to the back of the chair, and in that respect a kitchen chair is actually a great choice –  the back of the chair was narrow enough to strap the support on without stretching it but wide enough so the support doesn’t slide around. to get the best words on the page.get, and it keeps me upright and without lower back pain for quite a while (or at least as long as I want before I get distracted!). I’ve clipped it right on to the back of the chair, and in that respect a kitchen chair is actually a great choice –  the back of the chair was narrow enough to strap the support on without stretching it but wide enough so the support doesn’t slide around.

I’ve started to use a wide-grip pen for writing. It sounds so simple (I suppose that’s the point, though :)) but it makes a world of difference. Instead of spending my entire working time typing, I periodically switch to the magical yellow legal pad and do some drafting or revising there. I prop the pad of paper on the edge of the table and the edge of my laptop (so I can still reference my screen) and scribble away without any hand discomfort – none of the bones in my hands have collapsed when I use this pen. It’s that amazing (it should be for $7… yes, I splurged, but no, I don’t regret it for a moment).

And the magic yellow legal pad? Just give it a try next time you’re having trouble coming up with the right sentence order, syntax, or even starting a brainstorm session. There’s something about that yellow paper that makes the ideas flow faster… I think I feel like my words are less precious when I write on yellow paper and therefore I’m more willing to scratch them out and begin again.

P.S. The reason I do a lot of writing is because A) I write these posts, inane though they might be! B) I received a grant to write a long paper to submit to a journal on 20th-century feminism, and C) I work for a website that posts book reviews and reader guides for children’s literature.

Endurance

As a girl who sometimes has trouble getting out of bed in the morning, the word “endurance” doesn’t come to mind very often. It rings of long-distance medal events, a long day at the office, a redundant but necessary task that takes so long you use everything inside yourself to push through it, as if you’re winding a spring throughout the day to *THWOP* let everything fly loose in those last fifteen milliseconds, the last tick of the clock, the ding of the elevator.

I never think of having much endurance, but I suppose I must. Having EDS means that I really do push through each day minute by minute, as if I’m living a marathon.

“Therefore do not throw away your confidence which has great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised.”

-Hebrews 10:35-36 (ESV)

I stumbled upon this verse during my nightly “Ending the Day Right” devotional from YouVersion (Internet Bibles are so my thing–you can pick from any translation you can think of and you don’t even have to risk dislocating a wrist or elbow!! Talk about a blessing.), and it really struck me.

The past few days I have been dealing with the implications of my elbows subluxing (when a joint subluxes, it shifts or slides around in its socket or capsule but does not completely dislocate; subluxation in my joints frequently pinches important nerves, but mostly it’s just painful and frustrating). Neither of my elbows has ever subluxed, but this past week both of them starting slipping, sliding, grinding, and cracking (was that too much? sorry for the squeamish!) and I’ve had to wear some kind of compression every day. The compression braces aren’t what worry me – I fear that this could start happening all over my body for no apparent reason.

Here’s the problem: I’ve lost a lot of mobility in my arms because the muscles, tendons, and ligaments in my elbows have swollen and stiffened with each subsequent injury, and since they have been happening so frequently my arms haven’t had a chance to heal. This means that this loss of mobility could be permanent. What if my knees start subluxing? My shoulders (which already slip enough, thankyouverymuch!)? Thoughts like these have been swirling around in my brain with nowhere to go – there’s no off-switch for a chronic disorder.

Wait a second, God seemed to say to me. Just pray.

And so I found the #SheReadsTruth community and began to read Proverbs daily.

And I ached for more Scripture, more devotionals to fill my day, so I hopped on board three daily devotionals.

And I prayed and I prayed and I prayed.

And I found Hebrews 10:35 – 36.

And Hebrews 4:16: “Let us then with confidence draw near to the Throne of grace, that we may receive mercy and find grace to help in time of need.” 

And let me tell you: my confidence in the Lord flooded back. I had left that confidence by the wayside in my teen years when my family stopped going to church; I felt betrayed by the God I had never really gotten to know, despite my prayers, Youth Group meetings, Sunday School, and choir practice. I learned that my mom’s faith was pasted on for show and my dad’s was much too limiting for my large imagination and love for all people everywhere, and I gave up on religion. The way I came back is a story for another day, but suffice it to say that God showed me exactly what I needed at exactly the right time. And totally blew my mind.

Endurance. I need it, all right! I need physical, emotional, mental, and spiritual endurance in order to do God’s work. Because really, this “living” thing? This “marathon of life” that I wake up to each morning? That’s God’s work.

And grace? Well, He’s got me covered. And you, too. Boy, have I been humbled to the magnificence and awesomeness of God.

So this is an exercise in endurance as I push forward each day, trying to do the best I can to walk in the footsteps of Christ, and praising God for the mobility He has granted me this far along my journey. 

Every trial has its first steps, right? I count two of them:

  1. When God revealed Himself to me again at the kitchen counter in the wee hours of the morning this Sunday, I smacked my head in disbelief and took my first step on my right path knowingly.
  2. I went for a bike ride with my dad this evening for the first time in over ten years. Nothing went out of place, my elbows didn’t complain too loudly, and my bike sailed through the breeze as I followed my dad around our town, connecting with him on a very real level and taking my first step on my cycling training.

Everyone has to start somewhere.

Let’s begin.

Love and light,

Rachel

Baseline

Since I’m a few weeks out from beginning any sort of formal training plan, I decided that I should explore my baseline fitness/pain level so that I have something to look back on and reference. As I’ve said, my more fluid goal is to improve my overall wellness, which is a vacuous concept involving my physical and mental health (emotional and intellectual). I’m further breaking that down into a few parts:

  • pain tolerance: How does my pain affect my mood and vice versa? Can I try to pinpoint various stressers in my life that cause pain? How does my outlook on life and my relationship with the people in it change when I’m in pain? What strategies can I employ to minimize the mind-bending, mood-snapping effects of pain? 
  • physical fitness: What can I do to minimize the amount of time I spend in pain? What physical activities cause pain and why? Is there anything I can do to alter those activities to make sure I don’t finish in pain? (N.B. The tough part about EDS is that often the pain starts after a physical activity–I could be walking pleasantly on a softly-graded woodland path for an hour or so and spend the evening and the better part of the next morning with my pelvis in a vice grip and my hips screaming, so this question will involve some serious retrospection and careful examination!)
  • event-specific readiness: How can I train for a triathlon in a beneficial method? What training schedule allows me to gain endurance and readiness while letting me listen respectfully to my body (and not allowing me to wimp out)? 

Notice that although I am medically considered overweight by about 30-40 pounds, none of my goals involve watching my weight. I’ve done this on purpose because I know that if I start stepping on the scale on a regular basis, I will lose track of my ultimate goal of full-body wellness. If I can achieve better mind-body awareness, I think that weight loss will happen naturally because I will automatically become more careful about what I put into my body for fuel and I will be moving more! 🙂 I’m kind of a nerd when it comes to health, so I’ll probably do my fair share of nutrition research along the way.

In addition, I plan on seeing a nutritionist when I get back to school! I discovered that I am gluten-intolerant (it goes along with the EDS for many people) and whey-intolerant, and I have a sneaking suspicion that I’m mildly lactose-intolerant, so I’m looking forward to talking through my dietary restrictions with a professional to make sure that I’m eating a balanced diet and providing my body with the fuel it needs to be as pain-free as possible. 

So here’s my baseline:

  • subluxations in my SI joints and pelvis on a daily basis
  • subluxations in my shoulders, knees, and elbows on a 2-3x-weekly basis
  • right ankle still in recovery from dislocation and subsequent sprain 4 months ago (still in elastic support)
  • left foot: bones collapse on a biweekly basis
  • left elbow currently subluxed/mildly sprained
  • 3-4x weekly full-body ache, but more often if low pressure system moves in or if hormones are going wild!
  • eating a gluten-free, mostly plant-based diet with more sweets than I like (my eating habits are out of whack: I eat when I’m in pain, and the subsequent pounds the sugar packs on cause more pain–what a vicious cycle!)

I think that’s about it for today. I managed to get my bike out of a very-packed shed this morning without incident, so I’m excited!!

On My Bookshelf: Training Reads!

I’m working on three books that I believe will help me in my triathlon pursuit, and I’ll post my thoughts on each as I test the methods presented in each.

ChiRunning comes highly recommended from a few fellow EDSers and my PT, and I’m eager to attempt the technique! I have read about 75% of the book so far and from what I can tell the technique works primarily by making your core do most of the work in running, not your legs. The author explains how to make a “lean” work for you by taking the stress off your legs and transferring it to your abdominal muscles. It will take some serious mental and muscular retraining, but I’m willing to put in the effort and it will be a good way to ease into running. Even better, Dreyer advocates a “No pain, thank you!” approach to running that I am particularly keen on because that is exactly how I have to exercise: no pain, no gain can never be a motto of mine, because pain can lead to permanent damage on already-damaged tendons and ligaments!

Total Immersion Swimming uses a lot of the same alignment-focused exercise techniques as ChiRunning, which is great! Just like ChiRunning, Terry Laughlin explains how to lean on your torso when swimming the freestyle stroke to lift the hips, thereby making it a lot easier to sail through the water. The drills teach you how to adopt a “slippery” stroke to be more fishlike, and I really like that the book starts from square one so you can really retrain your brain to swim more efficiently and much more in alignment. Can’t wait to give it a shot!

Finally, to begin this mind-body wellness journey, I plan on starting Full Catastrophe Living tonight. It’s over 500 pages in print, so I opted for the Kindle version because I think I’ll want to have this on me at all times and because I can’t hold a 500+ -page book! Since I’m essentially starting from scratch in running and swimming, I hope that this will be the perfect time to adjust my mental habits and learn how to live more mindfully and less stressfully. In addition to the triathlon training plan, I’d really like to work in this book’s 8-week program (about 45 minutes a day of mindfulness training) to enhance my mental capacity to deal with pain and stress. They say that participating in triathlons quickly becomes a lifestyle, and I believe it! Here’s my shot at enhancing mine and hopefully gaining the kind of mind-body awareness and health that I’m seeking (and they say that mindfulness about life in general can help you lose weight! What a nice side-effect this all would be! :D).

A (Potential) Training Plan

After some Internet and book store searching, I have come across what looks like an easy, long-term training plan for beginner triathletes. With my body, I have to be especially careful to factor in extended periods away from training because I can count on the weather, hormones, or dislocations derailing my training plan.

At the moment, I plan on beginning Michael Pates’s 22-week Total Sprint Program at the beginning of the school year. I predict that a 22-week program will give me plenty of time repeat weeks as needed, back-track as needed, and generally give my body enough chance to adapt to the new strains I’m placing on it over the next year. I’m excited!!

Here’s what I need before I begin:

  • a pool! (there’s one at school so that’s why I’m waiting until the beginning of the school year in about three weeks)
  • Aerobars for my bike. I ride a 22-year-old road bike that belonged to my mom, and although eventually I would love to buy a new one, at this point I can only afford to add $130 Aerobars to make riding more comfortable over long distances. From what I hear, Aerobars keep my body aligned while I ride, and I plan on springing for a professional bike fit to make sure I’m doing everything possible to avoid injury and achy joints.
  • A wetsuit! My parents have agreed to buy a triathlon wetsuit for me for my birthday, and here’s why: My most unstable joints are my SI joints, pelvis, shoulders, and recently my elbows. The gentle compression of the neoprene suit will keep those major joints from making minute shifts while I swim, which is a contributor to next-day (or same-evening!) achiness and fatigue. I don’t expect the wetsuit to prevent subluxations (that would take a miracle!) but I do imagine that it will prevent small shifts in placement. I can wear neoprene braces for my wrists and ankles while I practice to stabilize those joints. If you have tips on buying a wetsuit, let me know!
  • some full-fledged motivation, which is where this blog comes in! 🙂

Let’s Start Here

Dear world,

I have decided to enter myself in a triathlon as a 21st-birthday present. I turn 21 in September, so this gives me about a month to stew over the implications of this present. I am not particularly athletic, I am 30-40 pounds overweight, and I have Joint Hypermobility Syndrome, also known as Ehlers Danlos Syndrome or Hypermobility (H)EDS.

So why now? Why set such a lofty goal one month before my 21st birthday?

First of all, I plan on scheduling this triathlon about a year in the future. We’re talking a full year’s worth of training here. I’m not jumping in with my clothes on.

Second, I have been inspired by fellow EDSer Laura and her “Fat Girl’s Ironman Journey” and motivated by an emotional breakdown I had last night and unloaded on my poor mother.

EDS is hard to live with. I suffer from chronic full-body pain and acute subluxations and dislocations of any nameable joint in my body, which makes exercise quite a task. In fact, sometimes getting out of bed in the morning is more than my joints can handle! However, I am a junior in college with an incredibly full schedule of school, work, and extracurriculars and I need my body to keep up with me for as long as it can, which is why I have decided to set a goal for it.

My body will run (…and swim and bike)! I know it will if I am patient, loving, and gentle with it. I am primarily embarking on a path to mind-body wellness with an eventual end goal of participating in a triathlon.

I have chosen a sprint triathlon as my eventual goal because it contains a manageable amount of each sport: on a good day (and certainly not back to back), I can currently swim about 1/2 mile, run about 1 mile, and bike about 5 miles without experiencing discomfort or body aches the next day. I love to swim and bike, and I’m learning to love to run.

Over the next year (or so), I plan to train myself to swim, bike, and run in alignment at comfortable paces. To do this, I will be using (and taking notes from) the methods of Chi Running and Total Immersion swimming, as recommended by my physical therapist and suggested by several fellow EDSers.

In addition, since I predict that increased exercise will equal increased pain, at least in the beginning, I will be taking notes from the book Full Catastrophe Living as a way to help manage my pain and live more mindfully. I love yoga and the idea of meditation (though I am just so darn antsy that I’ve never gotten into the groove!) and I am totally approaching this whole journey with an open mind spiritually, emotionally, and physically.

Something has got to give. And when it does, I’ll be running.

Hopefully,

Rachel