I’ve been knocked out with a cold since Saturday morning but thanks to President’s Day this was my first day alone with the kids while sick. And… I spent the entire afternoon fighting off a meltdown and trying to help Rondel do the same as he’s also getting sick. Getting to go to work tonight was such a relief – a chance to escape the emotionally charged atmosphere in the house (probably only emotionally charged due to my current mood associations) as well as the constant sensory input coming from three little kids. I was alone, with tasks demanding very little from my overwhelmed socioemotional skill set and utilizing instead the more intellectual and scientific parts of my brain.
It made me realize how much I rely on that balance to give me renewed energy for the daily work of parenting, and how valuable rest – both physical and mental – is for coping with life in a turbulent world. (Work is very definitely restful for me, at least in this season of life). It also made me very thankful that I have this built-in source of margin! It helps me regulate, process, and relax – and in so doing it allows me to care for my family in a more calm and and emotionally available way. And at times like these, when my innate emotional margin is completely used up dealing with sickness, it is particularly helpful.
What are some ways that you expand your margins and give yourself rest, thinking of rest not simply as doing nothing but as creating mental balance or emotional space?
Every morning (more accurately, most mornings), I sing the invitatory psalm for the liturgy of hours. Even if I don’t manage to pray any of the actual hours, I have the invitatory memorized now so it is easy to fit in.
And every day I find myself pondering the human struggle – my own personal struggle – to live the life of faith with perseverance and endurance, as a journey of many years rather than a short climb to a plateau of spiritual accomplishment.
Today, listen to the voice of the Lord.Do not grow stubborn, as your fathers did in the wildernessWhen at Meribah and MassahThey challenged Me and provoked MeAlthough they had seen all of My works.
Do not harden your hearts, reads the non-liturgical translation. It reminds me, every time I read it or sing it, of the apostle Paul’s injunction to the Galatians: Do not grow weary in doing good. (Probably because it gets quoted in the book of Hebrews in the context of the eternal rest to which God is leading His people.)
Do not grow weary, God says. Do not give up, do not abandon the faith for something else, do not forget all you have seen of Him and all He has done just because nothing spectacular is happening right now. Like the Israelites, sometimes we follow God through the desert, and our only sustenance is the daily bread He sends, and we don’t know how much longer it will be until the promised land or even the next oasis – and in those times the thought of just sitting now and not traveling any longer, or the possibility of following some other guide, can be so tempting.
Do not grow weary, do not grow stubborn, we sing each morning in reminder to ourselves. Do not lose heart, do not forget that God is working all things for good or that He is making all things new. My heart cries, “why is the road so long? why do You keep me waiting for the food and drink my soul needs so desperately?” But let me ever cry in childlike trust, knowing there is a purpose, believing it is good, not in the proud self-righteous judgment that led the Israelites to rebel against God at Meribah and Massah when they saw no water and thought that God would not be faithful.
Do not grow weary, the apostle reminds us, in doing what is right. Do not let boredom or fatigue or the worries and cares and pleasures of this life steal your will away from following God and doing His will. Do not spread yourself so thin that a hole tears through the center where God used to be. Do not let grudges and bitterness against other people build up in your soul and lessen your motivation to love and serve those around you.
For in due season we shall reap, if we do not lose heart. - Gal. 6:9Again he sets a certain day, "Today", saying through David so long afterward, in the words already quoted,"Today, when you hear his voice,"do not harden your hearts."For if Joshua had given them rest, God would not speak later of another day.So then, there remains a sabbath rest for the people of God; let us therefore strive to enter that rest. - Heb. 4:7-11Let us lay aside every weight, and sin which clings so closely, and let us run with perseverance the race that is set before us, looking to Jesus the pioneer and perfecter our fatih, who for the joy that was set before him endured the cross, despising the same, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. - Heb. 12:1-2
I find that I need this, every day: that it is good for me to be reminded, each day anew, to look to Jesus, to endure, to run the race with endurance, to prepare myself for battle with the armor of God, to strive for the promised sabbath rest of joy with God and man – to not grow weary in this wilderness, to not harden my heart against the hope that is in Christ.
Now there was a man in Jerusalem, whose name was Simeon, and this man was righteous and devout, looking for the consolation of Israel, and the Holy Spirit was upon him. And it had been revealed to him by the Holy Spirit that he should not see death before he had seen the Lord’s Christ. – Luke 2:25-26
I wonder what it would have been like to live with that promise: to wake up each day to the brokenness of the world; to witness sin and sorrow and suffering and still not see the promised Savior; to wonder, in the back of his mind, if he’d actually received the promise from God. I imagine it would be a fiercely held hope, a belief clung to with claw-like fingers in the face of all the opposition doubt and despair could dredge up.
And because he had clung so fiercely to the promise, when the time came for it to be fulfilled, Simeon was ready: ready to drop whatever else he was doing, ready to act in faith without the choking chains of fear, ready to claim that which the God he knew to be faithful had promised him.
And inspired by the Spirit he came into the temple; and when the parents brought in the child Jesus, to do for him according to the custom of the law, he took him up in his arms and blessed God. – Luke 2:27-28
I can just see him, standing the temple, watching the people drift in and out, surrounded by the sounds and smells of worship and sacrifice, wondering with each family his eyes passed over, “Where is he? Where is the coming Messiah?” And oh, the joy, the almost paralyzing thrill of of undeserved, unparalleled, ecstatic knowledge! For here was the child. Here was the fulfillment of the promise. However long and winding the journey of salvation, Simeon was content knowing he had seen this moment, knowing he had beheld with his own eyes the promised Redeemer of the world.
As we sing each night in the liturgy, remembering Simeon’s faith and the hope that Jesus brings,
Lord, now you let your servant go in peace;
your word has been fulfilled:
my own eyes have seen the salvationwhich you have prepared in the sight of every people:
a light to reveal you to the nationsand the glory of your people Israel.
I can definitely be an over-sensitive perfectionist, but I don’t think it is irrational to be hurt by a sermon about the role of the body and communication in worship that doesn’t even mention disability. There wasn’t anything technically incorrect with what was preached, but everything had to be translated, contextualized, or rephrased if it were to be relevant to the life of someone with a physical disability or social communication disorder. And it just leaves me feeling so unwanted in the church – feeling that people like me can never fully participate in the body of Christ because of issues with how our own bodies and brains both respond to our environments and express our emotions.
It is important to give the best of ourselves to God: all of our mind, heart, and body, as the gospels say. For the Israelites of Malachi’s time (the source text for the sermon was Malachi 1), it was important to offer the sacrifices according to the law instead of just giving Him their leftover and damaged animals, and it is good and right for us to remember that principle and follow God with singleness of mind and whole-hearted devotion. Translating that to the lived reality of worship music during Sunday service is not so clear-cut, however. I remember when I was in high school and thought I knew what was best for worship music: what types of music would best glorify God and lead people to honor and meditate on Him – and I wrote about it in a public forum, and I received the most graciously pointed rebuke I have ever been given for my arrogance. Fifteen years later, I am more aware of the diversity of the body of Christ: how each of us responds in a different way to different words and styles of music; how each of us can offer worship in a unique way; and how when we worship together we all must bend and accommodate others, both sharing from and holding back on our individuality so that we can worship as a unified body.
It is for this reason that I participate in the musical worship at our church, although it is difficult for me in multiple ways. I wear ear plugs so I can tolerate the volume; I sit on the end of a row so I won’t feel overwhelmed by the people around me; and when it’s really bad, I try to sit in a small area just off the sanctuary instead of going outside so that I can still be part of the service. I sing even the songs that I don’t particularly like (although I will skip lines that I feel are theologically inaccurate…), and when I can’t sing I try to meditate on the message of the songs. I don’t expect the worship service to be tailored to my preferences and needs, and I often find great beauty and encouragement through music I would never have sought out on my own.
When a pastor tries to tell his congregants how to worship, however, with the fear hanging over their heads that if they don’t get this right they will be guilty of offering their secondhand, broken leftovers instead of a worthy sacrifice, it is reminiscent of the same arrogance I had at sixteen. Jesus told the woman at the well that the time was coming in which God’s people would worship Him in spirit and in truth – so the way we move our bodies during a praise song doesn’t matter if we are centered on God and praising Him. Additionally, to imply that there are right and wrong ways to physically conduct oneself during musical worship – and then not to say what those ways are because everyone should know – is to pave a straight and smooth path to anxiety, shame, and a sense of inadequacy for anyone in the congregation who struggles with reading social norms and expressing feelings in an “acceptable” way.
I am positive that if autistic and intellectually disabled adults were moving and responding in worship in an expressive way that felt authentic to them, someone in the church would call it disruptive and try to make them conform to a more “normal” behavioral pattern. This same attitude is just as toxic in reverse, when it lands on people who tend to not show any emotional expression with their bodies. I prefer not to move in large ways, not to lift my hands and be exposed and vulnerable with a crowd of strangers around me, not to share my emotions with people I do not know well. God knows what is in my heart, and it is that which I offer to Him – He will not judge me for not moving my body in a way that aligns with neurotypical standards for deep emotional responses. He will not make me feel ashamed because my anxiety and sensory overload cause me to respond in a less than perfect way.
If the church wants to be truly inclusive, truly open and welcoming to those of us who feel and respond and behave differently, then the least it can do is acknowledge our presence. Acknowledge that some people cannot physically respond with lifting of hands or kneeling because of chronic pain or age or muscular dystrophy or any other disability. Acknowledge that for some people a verbal response is the most genuine and whole-hearted response they can offer in worship, because their authentic physical responses are buried under years of practice at masking to fit in with a neurotypical society. Stress the importance of the heart centered on God, and acknowledge the reality that the outward response can look radically different because disability and neurodivergence are real things that affect real people present in the body of Christ.
I realized today that being a good parent involves recognizing my own insecurities about my worth – the aspects of myself from which I feel my own value as a person comes – and not raising my children out of that place of fear.
For me – painfully shy, socially awkward, often feeling out of place or more like an observer than a participant, never quite fitting in – it was in my intelligence that I found an opportunity to shine, a way to attract positive attention from both adults and peers, and a role to play in my social network. Failing at something academic (with a very broad definition of that term that may include “not being perfect” or “not being the best”) was ridiculously hard for me to cope with, and the thought of losing my intelligence to brain injury or dementia is still one of my greatest fears. While I honestly enjoy and excel at intellectual pursuits, making it so central to my sense of self-worth left me feeling inadequate and incomplete, wanting to be seen and valued and loved for more than just my intelligence, to belong in a community for more holistic reasons. That was one thing that I loved about my husband Paul from the beginning: that he saw and loved the entirety of who I am, and didn’t make my intelligence the most important part of who I was to him.
Now, as my children enter the school years, I am noticing some of those same insecurities about my own intellectual “failings” resurfacing in a new form – how some part of me wants to push, and push, and push my kids towards academic success; how inside, I start feeling panicky because Aubade is three now and doesn’t know all her letters yet and can’t count past four; how I second-guess our educational choices multiple times every day because if I don’t choose the absolute best thing they are going to be less than what they could be, less than intellectually and academically perfect.
And it’s just as ridiculous and overblown now that it’s about my children as it was when it was just about me.
Academic success is a good thing, but it’s not the only or even the most important thing needed to have a good life, or a happy life, or a successful life. Character matters more, for goodness and meaningful purpose; emotional intelligence and relationships matter more, for happiness; and self-awareness, ambition, drive, and persistence matter more for success. Still more important than all of these is faith. Seek first the kingdom of God, Jesus says, and all these things which you need, which fill your heart with worry, will be given to you. For intelligence can be lost, and happiness can turn to sadness, and success can collapse in an instant – but God will never lose or forsake His children, those who love Him and are called by His name. It is His perfect love, after all, that casts out fear, that gives us value unconditionally, and that makes us whole.
“Eärendil saw now no hope left in the lands of Middle-Earth, and he turned again in despair and came not home, but sought back once more to Valinor with Ellington at his side. He stood now most often at the prow of Vingilot, and the Silmaril was bound upon his brow, and ever its light grew greater as they drew into the West. And the wise have said that it was by reason of that holy jewel that they came in time to waters that no vessels save those of the Teleri had known; and they came to the Enchanted Isles and escaped their enchantment; and they came to the Shadowy Seas and passed their shadows, and they looked upon Tol Eressëa the Lonely aisle, but tarried not; and at last they cast anchor in the Bay of Eldamar, and the Teleri saw the coming of that ship and they were amazed, gazing from afar upon the light of the Silmaril, and it was very great. Then Eärendil, first of living Men, landed on the immortal shores.” – J. R. R. Tolkien, The Silmarillion
Eärendil’s guiding light, the Silmaril, eventually becomes a star giving hope to the people of Middle Earth: it is that star that Sam Gamgee looks up to see from the crooked paths of Mordor, whose light helps him to remember that there are good and beautiful things higher and deeper and longer-lasting than the present evil and suffering. It is the light of that star that resides in Galdriel’s phial – a light, she says, for when all other lights go out, a light that gives Frodo the courage and strength to oppose the giant spider Shelob in her lair.
But it is this story, where it guides Eärendil through all the obstacles in his way to the “immortal shores” of his forbidden destination (forbidden because of the evil of Men and Elves), that comes to mind whenever I hear the phrase “star of the sea” (which I have been a lot, as it appears in the Marian antiphon for the season). Like the Silmaril, Mary can be a light leading us always to her Son, bringing us to His life, reminding us of His presence to give us hope. She is not the giver of life, nor the way through the obstacles, but she guides us to the One who is.
“The absence of effective treatments for manic-depressive illness in earlier times did not mean that these patients were not treated. They were treated with all sorts of substances and procedures from ancient times onward. It’s just that none of these treatments worked, and most were harmful.” – Walter A. Brown, Lithium (emphasis added)
When I came across this quote I thought instantly of modern treatments for autism – not the few designed to help an autistic individual learn to cope with the neurotypical world, but those that claim to cure the condition. Even the most mainstream behavioral therapy is concerning (particularly to autistic adults who endured it as a child), and desperate parents who can’t handle having an autistic child try many stranger and more dangerous “treatments.” Different restrictive or elimination diets are supposed to reduce the behavioral symptoms of autism, according to parental observations; given the oral and textural sensitivities of many autistic people, those diets are likely to become even more restricted to the point of being unbalanced, or very costly for the parents (and objective, blinded research observations show no difference). Parents may choose not to vaccinate to prevent autism, and instead create opportunities for potentially deadly preventable diseases to flourish. And one has only to read about the “bleach cure” to see how supposed cures can cross the line from unwise to abusive.
Autism may not even be curable. It’s highly unlikely a single compound will be found that renders the autistic mind essentially neurotypical, like lithium can regulate and even prevent the mood swings of bipolar disorder. And yet so many people invest so much time, energy, and money into making autistic people act like and think like neurotypical people – even when those efforts are harmful to the autistic people they claim they want to help. It’s like forcing deaf children to speak orally and lip read instead of encouraging sign language, or shaming a wheelchair user for not trying harder to stand and walk. Instead of hurting autistic children to try to mold them into conformity with some neurotypical standard they can never completely reach, support them by making the world more aware and accepting of neurodiversity. Help them develop social skills, adaptive and pragmatic skills, and language skills without trying to change the core of who they are, and learn to see each child for the unique and beautiful person that they are, needs and struggles and gifts all bundled up together.
I’m not really that great at looking back or looking forward. I read a lot of C.S. Lewis in my formative years, and I still have his words echoing in the back of my head: Screwtape teaching Wormwood how to enslave men to either the past or future and thus distance them from the present which alone intersects with eternity; the unfallen Queen on Perelandra describing time and circumstance as the waves of the sea into which we plunge as we swim, taking what comes and letting go of what has come before.
However, it can be helpful to look back and see the path I’ve taken – to see evidence of God’s grace, of answered prayer, of comfort in hardship, of blessing and providence in good times – and be reminded of God’s faithfulness. It can be encouraging to see progress made, or convicting to see unhealthy patterns deepening. Similarly, it can be good to look forward, to make goals and resolutions, so that I can prepare well for the future I hope to build.
This year especially is a bit of a landmark, as not only the old year but the old decade comes to a close. Ten years ago – 2010 – I was single, graduated college, moved out, bought my first car, and began working at the university where I am still employed now – so really, the whole of my adult life so far has taken place in the now-past decade, and even the highlights would take far longer than this post to describe.
One of the major highlights of 2019, however, was finally getting diagnosed with autism and having a reason for all the times I’d felt out of place and two steps behind despite hearing from everyone how smart I was, for all the moments I’d been so overwhelmed by a sound or touch that I couldn’t process anything, for all the weird behaviors (now I know they’re called stims) I’d accumulated over my life, and more. This was reflected on the blog – 4 of my top 5 most popular posts this year were from my Autism Acceptance series in April:
That third post in the list above touches on one of the things I’m most proud about this year, actually: the way I was able to identify the onset of seasonal depression and take steps to counteract it. This is the first Christmas in several years that I have only had minor situational anxiety instead of moderate overarching depression, and I think being prepared made a huge difference. It wasn’t the type of preparation that gets me all anxious about making lists and potentially forgetting things; just a conscious choice to let go, to dig deep, to roll the thoughts away, to take things one step at a time, and to center my life on meditative prayer.
What also helped was a chance, at the beginning of December, to bike significantly more frequently. I started biking in to work 1-2 days a week in November, but in December my hours increased (from 8 to 20 per week!) and I needed to commute 4 days a week. That regular time outside exercising is amazing for mental regulation and emotional health, at least for me! And the reason for the change is also something I’m excited about, both for 2019 and going into 2020: I have the chance to learn bioinformatics and transition over the next 6 months from the genomics wet lab team to the bioinformatics team, which gives me a chance to learn something I’ve been interested in for years and develop skills which will be even more valuable for my career.
Outside of work, I’m looking forward to an opportunity to help develop neurodiverse community and support at my church. The woman who’s been running the special needs children’s ministry wants to reshape it to better reflect acceptance and neurodiversity, multiple people have anonymously asked the pastors about ministries specifically for neurodiverse adults, several pastors across our web of churches are working on formulating a theology of disability, and I’m apparently one of the adults they know of who is neurodiverse. Hopefully they will not ask only me, since neurodiversity is by definition diverse 🙂 But I really appreciate that they care deeply about the whole spectrum of the children of God, that they don’t want to make it something that neurotypical people are doing to or for us without our input or leadership, and that I have a chance to be involved!
With all of that said, I have just a few resolutions for the new year.
First, I resolve to pray every day. Things are just better when this happens, like marriage is better when I actually spend time talking with Paul 😛
Second, I resolve to write on this blog more frequently. My goal is approximately every 3 days – so, 122 posts for the year. I have lots of ideas but often don’t post for reasons that don’t make sense outside of my head, so I’m going to try to let go of my perfectionism and just share my thoughts.
Third, I resolve to read a variety of good books and keep a book log again! That was such a good experience in the past and I really need to get out of my fan fiction rut anyway. (I already have two books on my list and I can’t wait to write about them!)
How about you, readers? Any highlights from the year (or decade)? Anything you’re resolving for the New Year or especially looking forward to? Or conversely, any challenges from the past or apprehension about the future? I always love to read your thoughts.
O King of all the nations, the only joy of every human heart;
O Keystone of the mighty arch of man,
Come and save the creature you fashioned from the dust.
In Mary’s womb, in the months leading up to the Nativity, in the dark, quiet, hiddenness, God took on human nature. The early Church fought and died for this fundamental truth: that Jesus was just as fully human as He was fully God, the two natures combining in the one person. And through this unity, established in His own body, He makes possible for us a unity with God in Him: our humanity lifted up to God’s divine presence and everlasting life in true union with the immortal. But that is not the only unity for which He paves the way, for it is also in Him that the unity of all people and people groups is made possible. For the good news of Christmas is a good news for all the people, throughout time and space, ethnicity and culture, history and hope. In Him the walls between nations and tribes and races and cliques can be fully broken down – for through Him, the Keystone, all our disparate and individual clans are held together in one glorious and mighty arch of redeemed humanity.
O Radiant Dawn, splendor of eternal light, sun of justice:
Come, shine on those who dwell in darkness and the shadow of death.
The image of God as light has always resonated deeply with me. When I was seven years old, I read a book that described the gospel message as Jesus coming into our hearts as light comes into a room when the windows are opened, leaving the darkness with no place to hide, and I still remember how deeply I wanted that light to shine on me. (As far as I can remember, that was the first step on my journey of salvation, the first moment I desired to follow God.) In high school, I loved Psalm 23, despite wanting to like something not quite so well-known, just to roll that phrase over in my mouth and in my head: the valley of the shadow of death – and to know, as the first rounds of depression came, that no valley was too deep, no shadow too heavy, for God’s light to reach me.
I’ve gone through times in my life where it felt like I was walking on a path I could not see, in a world grayed out by swirling mists and darkened by heavy clouds – where the darkness, the lack of clarity and visibility, was a tangible emotional presence. And sometimes it was sorrow at the brokenness of the world, clouding my eyes, and sometimes it was a pattern of sin in my own life, and sometimes the fog was there on its own accord. And every time my spirit cried out – and I am sure the Spirit cried with me, with groans that cannot be uttered – for that light to come, shine on me, dwelling in the darkness, striving to find my way under the shadow of death.
And the Star of Christmas shines out over the earth, from the little stable in Bethlehem, and I lift up my eyes to Him from whom comes my help; and even when I struggle to see the light myself I hold fast to the knowledge that He who has promised is faithful, and that He will come again, as He came before, with the radiance and purity of light shining in to the darkness of despair.