Tag: personal

Posted in information, musings

POTS: adding another diagnosis to the stack

Posted on by kristinabean

Shortly after things closed down for the pandemic back in March, I was biking on the stationary bike in the garage (since I was no longer biking to commute to work, since I was now working from home) when I started feeling very lightheaded, shaky, and queasy. It was similar to, though more severe than, the times I’ve had low blood sugar events, so I decided to eat something and rest; I don’t think the eating helped very much, but the rest certainly did.

I would have written this off as dehydration, not eating enough, biking at too high of an intensity, or so on if it hadn’t initiated chronic lightheadedness, dizziness, and fatigue. On good days, I would get a rush of lightheadedness when standing up; on bad days I would have lightheadedness just from sitting upright, reading aloud, or singing, and fatigue from just walking around the house interacting with the kids. But I could always just argue that it was one or two bad days, and that it isn’t that abnormal to get dizzy when standing up. Maybe it was just the hot weather arriving and I needed to drink more water… but I didn’t seem dehydrated otherwise.

My family finally convinced me to see a doctor after this had continued for just over a month, and because my EKG at the primary care office had an abnormality (and all my lab work was normal), I ended up seeing a cardiologist who ran a variety of tests and diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS for short).

I’d never heard of it before, so I’m guessing most of you probably haven’t either. Here’s how it works (in abbreviated terms!). Normally, when a person stands, the brain triggers the autonomic nervous system to constrict blood vessels in the lower part of their body to help blood return to the heart, and at the same time tells the heart to beat faster to help pump that blood against gravity up to the brain. In POTS, the heart beats faster like it should, but the something goes wrong with the autonomic nervous system and the blood vessels don’t constrict the way they should. The brain, not getting the oxygen it expects, continues to send out ever more frantic messages to the heart and the nerves – and so the heart ends up beating faster and faster since the nerves aren’t responding.

What does that look like for me? Well, on a good day, my heart rate will go from mid 70s when sitting to 100-110 when standing, and stay that high even after the initial rush of lightheadedness passes. On a bad day, it will go up into the 150s just from standing. It makes standing very tiring… cooking a meal for the kids or washing dishes after a meal can be one of the hardest parts of the day because of the time spent just standing in the process. Interestingly, walking can be easier to handle than standing, because the movement of the leg muscles helps push the blood back to the heart despite the lack of assistance from the ANS. In addition to the tachycardia, which is the primary symptom that defines the syndrome, I may have chest pain, lightheadedness, dizziness, fatigue, headaches, nausea, body aches, tingling arms and/or legs, and feelings of clumsiness and/or muscle weakness.

Unfortunately, medicine hasn’t yet determined the cause of POTS or a reliable treatment for it. The primary recommendations are to wear compression socks/stockings (to help push the blood back up), exercise (to strengthen the skeletal muscle that can help push the blood back up), and drinking tons of water and eating lots of salt (to avoid dehydration and also increase overall blood volume). There are also a lot of medications that can be prescribed off-label that help some people, but while my cardiologist prescribed one for me he didn’t realize it was contraindicated by other aspects of my medical history so for now I’m trying to manage with the home remedies.

So, the last few months I’ve been mentally processing this during my free time, instead of spending my extra energy thinking and creating and writing for the blog. It doesn’t help that the amount of extra energy I have has been depleted both by the POTS itself as well as by trying to learn a new dance of pushing toward growth without triggering a crash. In a way, it’s similar to the balancing act of living with autism in a neurotypical world, but with a new set of triggers and symptoms (as well as some overlaps; bad POTS days definitely make me more sensitive to sensory input). But I think I’m finally ready to emerge from this hibernation! I’ll probably write a few more articles about POTS, as this is really just a brief introduction, but I also have so many amazing hikes to tell you about from this summer, and so much learning to share as the kids have started our homeschool program for the year. Thanks for still being here to share this little corner of the Internet with me 🙂

Posted in musings

ash wednesday

Posted on by kristinabean

I don’t really feel qualified to write about the mystery of Lent, its call to holiness and love through suffering and confession. I’m not particularly good at any of those things, to be honest.

But Lent is not just for the saints, an exalted or esoteric road that only the most advanced in the faith can travel. The pursuit of God – the long journey of learning to love – the turning away from sin to embrace the right – those things are for all of us. And Lent is a reminder to be intentional about them, and an opportunity to take tangible steps in their direction, no matter how small.

We made prayer chains yesterday as a physical reminder to pray and a way to mark the season of Lent. Rondel especially has so many questions and a heart open to learning about God; hopefully this will help him learn to come to God and know Him in that personal way.

We pray because Lent calls us to come to God with our weary hearts and distracted minds. We fast because Lent calls us to give up the earthly things we substitute for the consolation of God. We give because Lent calls us to emulate the One who gave his own life for us. Lent calls each of us this way, wherever we are, no matter how small or trivial our steps toward God might seem to someone else (it’s not about comparing with others anyway).

broccoli

So… does anyone else find themselves murmuring things like, “The broccoli is good. The broccoli is life-affirming” as they eat dinner at the end of a long day?

In my defense, it was exceptionally tasty broccoli 😛

Posted in musings

thoughts on rest while dealing with a cold

Posted on by kristinabean

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?

Posted in miscellaneous

tea!

Posted on by kristinabean

I purchased some loose leaf tea (from Adagio Tea), mostly because I was curious about how it would compare to the bagged tea I’ve been becoming addicted to, and realized very quickly that the quality is much superior 🙂 The tea is much smoother, with more layers of flavor, and the leaves can be re-steeped more times before becoming weak (which is nice, because I like cream in my tea and you need strong tea to support the cream!).

I also realized that I’m fairly particular about my tea.

It’s not just that I prefer black tea to green, white, red, or matte; it’s not just that I prefer black tea over most flavored tea; no, I prefer assam black teas (and blends) over ceylon black teas. I had already suspected this, as I like Irish breakfast tea much more than English breakfast tea, but this order confirmed it. You see, along with the order they sent a week’s subscription to their communiTEA program – a daily cup of tea with a new flavor or blend – and the only one I really enjoyed and would want to drink again was an assam black tea blended with peach, marigold, and caramel. The oolong and raspberry teas I couldn’t even finish.

What’s kind of neat (since my favorite tea is Irish breakfast) is that the way I like to drink tea (strong, with plenty of milk or a dash of cream) is apparently the Irish way to drink tea! You know, if you can believe what you read on the Internet 🙂

Are any of you tea drinkers? What are your favorite blends, or your tea idiosyncrasies? I’d love to hear from fellow tea-lovers online since I don’t know many in real life!

Posted in musings, quotes

star of the sea

Posted on by kristinabean

“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.

Posted in musings, sqt

{sqt} – spring will come again

Posted on by kristinabean

As the seasons fall toward winter, my emotional center falls with them. Even in the midst of good, happy things; even when I feel genuine gratitude for the blessings in my life and joy for the beauty around me; even when I have hope for the future and time spent in prayer – even in all those things, guilt, insecurity, anxiety, and sadness well up within me in this season.

a single stalk of grass fluffy with seeds about to fly

I’m not sure why this is – it could be the drop in temperature, the slowly shortening days, or the impending holidays (which for me really start on Halloween – we don’t have a week without something extra from then through Epiphany, since four of our birthdays are added to the mix).

But at least this year I am aware. I remember the way the wave of depression carried me away last fall, how it caught me unawares and vulnerable, how much I struggled through the next few months as a result, and was unable to lift my head up to see the beauty and feel the wonder and share the joy of Christmas. (I’m really much more of an Advent person – the waiting, the longing, the expectation, the melancholy and sorrow at the brokenness of the world tempered only by the hope of the coming Savior – but I think Heaven is going to be more like Christmas, the fulfillment of hope, the fullness of joy, and I ought to be preparing my heart for that eternal home – )

Looking towards the sky through the changing leaves of the maples

And now – I am being intentional. I am taking time to pray (more than before, but still far short of what I ought, what I need.) I am making time to exercise. I am pacing my efforts with the kids, letting good be good enough instead of demanding perfection from any of us. I am growing green in my garden, the rich riot of life a balm for my soul (yes, our seasons are all different here). I am resting in the beauty and freedom of nature, bringing the kids where they can explore away from the structure and restraints of the city, where we can learn to love the earth we live on, where we can find the secret treasures of the untamed spaces.

Limerick walking along a mountainside trail with a walking stick, like a hobbit journeying through the Shire

These things do not make the struggle go away. They do not lessen the pull of the undertow. But they help give me the strength that I need to keep my head above the water. It is an interesting strength, that I find in these times, through this intentionality, not a strength of fire and sparks, of passion and heat, of bold courage and drawn swords. It is more the strength of the tree, that bends in the face of the wind so that it will not break, that learns to grow sideways to endure the forces against it.

Wild grass, golden in the autumn sunlight, seed heads full and ripe over green stalks

It is even, I hope, more the strength of the grass, that sends down its roots deep into the soil, and its runners far-spread around it, and its seeds to every corner on the wings of the wind: by every means ensuring that when the fire blackens the land it will rise again from the ashes, that when the snow cuts off the sun it can wait for spring to come again.

I’m joining the SQT linkup today even though I don’t actually have seven things, but hey, Kelly is bending the rules too and it’s her blog party so I think it’s ok 🙂 Head over to This Ain’t the Lyceum to join in!

Posted in musings

walking by faith: because coping with mental illness is like striving for a virtuous life

Posted on by kristinabean

When you live with a mental illness, you get a lot of practice at redirecting the pathways of your thoughts. Sometimes it’s as simple as stopping and taking a deep breath when the first hint of an unhelpful emotion or mantra wafts in; other times it takes repeated corrections, minute by minute, guiding your thoughts out of the road they want to travel and into a different pattern.

“He’s angry at me”, my mind says – and I have to force myself to look at the facts of the situation, remember he didn’t sleep well last night, so maybe it makes more sense that he is angry at something else or just tired and not showing positive emotions well.

“I can’t do anything right”, it says again, and I have to list off the things that have gone right in the past hour, no matter how small they are, and put the mistake in perspective: I fed the kids a healthy breakfast, I got a shower, I got everyone to speech therapy on time with activities prepared, and it’s not the end of the world if they only have socks on and their shoes are sitting at home…

“You’ll never be worth anything, they’d all be better off without you”, it repeats, and I have to turn the feelings inside out, repeat what I believe in the core of my being about the innate worth and dignity of the human person, remember the irrational and inexplicable unconditional love of a child, pray for the strength to run my race with endurance as did the saints who suffered and died for their faith, lift up my head like a superhero knocked down but not out once again.

The emotions are harder to deal with, being by nature less specific of a difficulty. Sometimes it seems as if the whole world is covered in a gray mist, blocking out the color and the joy and the reason to try, and all you can do is make your way from one task to the next, drawing on reservoirs of strength you didn’t know you had, waiting for the sun to break through again. Sometimes guilt (or self-loathing, or whatever the word for it is) attacks like a fistful of knives in your brain, and you hold your breath through the mental pain and then, somehow, inhale again and lift your face to the fight once more. Sometimes everything you take in is edged with inexplicable sadness, the inverse of a silver lining, and you embrace the beauty anyway, despite the bittersweet twist in your heart.

And what I’ve been coming to realize, lately, is that this turning away from the easier path into downward mental spirals and unhelpful thought patterns, and this setting of my feet so carefully and unsteadily in new ways of thinking, is really very similar to the process of living a virtuous life. Here is my fear, dissuading me from some act of charity or justice or faithfulness – now I must turn my thoughts aside from that path, from the rationalizing of my cowardice, and take an action I very much do not have the emotional support to make. And in the act, I make it that much easier to choose courageously in the future. There is my anger, snapping out at the people I love, roughening my edges to sharp and jagged lines, giving me hurtful words to hurl – now I must close my mouth, count to ten, pray for peace and gentleness and self-control, try to look through another’s eyes, and eventually even try to speak in kindness and in calm. And in the act – in every time I try, even if I do not entirely succeed – I train my mind and will to not fall so automatically into the pathway of that vice. It’s rather a daunting thought, knowing that I have both sanity and virtue at stake here 😉 – but on the other hand, what practice I will have at it! And with God near at hand with His grace and strength, and the community of saints present to encourage and guide me, I have hope that my practice (in both arenas!) will not be in vain.

Posted in autism acceptance month

autistic inertia

Posted on by kristinabean

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Ever since I took physics and learned the word “inertia”, I’ve used it in an off-label manner to describe my own difficulties in beginning an activity, changing to a new activity, or stopping an activity that I’m interested in. I have a lot of inertia, I’ll say, so it’s hard for me to get started with something, especially if it isn’t something I have a lot of motivation to do (like cleaning the bathrooms!). Or: I am mentally like a very heavy ball rolling along and it can therefore be hard to stop my brain from pursuing its direction of interest (for instance, obsessive reading at the expense of all other good things like sleep). Then there is the emotional inertia: once I am angry at someone or about something, it is incredibly difficult to stop feeling that way – but once I am close to and grow to trust someone, it is equally difficult to damage my respect for and loyalty to them.

It always seemed to me that most people didn’t have quite so much trouble getting started on disagreeable-but-necessary tasks, or have to race to recalibrate to avoid panicking when plans abruptly change, or get stuck on one particular thing for quite so long. For example, no matter how far in advance I prepare for something, I am always struggling to finish it right as the deadline approaches – I just keep merrily going along in one step of the process and suddenly realize with horror I’m almost out of time to do any subsequent steps! Or I’ll set phone reminders and ask my husband to text me and think about it every day and still manage to “forget” to make a necessary phone call for weeks, because I don’t have the mental ability to initiate an activity I dislike without some type of urgent motivation (again with the dirty bathrooms…). Or I’ll find myself unable to read anything other than the one book I’m currently absorbed in, so I’ll just read it over and over and over again until the hunger for it finally abates (I read Lord of the Rings over twenty times when I was 18-20 years old, as a reference point for this. I just could not move on. And that was hardly a unique situation…)

A few years ago I tried looking up this concept online to see if anyone else had similar struggles, and to my great surprise I found that other people had noticed the same phenomenon and even given it the same name! There is something very reassuring about not being odd and not-quite-right all by oneself. From what I can tell, this inertia is related to several executive functions that can be impaired in autism, and is related to more commonly-referenced autistic behaviors such as rigidity, adherence to routine, discomfort with transitions, and perseveration. It is not due to laziness or stupidity; it’s just a result of the way the autistic brain is wired. And that is certainly a relief to hear when someone has spent years berating themselves because they’ve tried to change and couldn’t – and it also provides the accuracy of understanding necessary to design helpful solutions to the inertia problem. For example, no matter how many times I tell myself I need to get my lazy self in gear and clean the bathrooms, it isn’t going to happen and I’m going to be swamped in guilt and struggle to do anything else either – but if I tell myself something like, I’m in here anyway supervising a bath so how about I just wipe things down and see how much I can get done, I can usually get it taken care of and then have the glow of having conquered a difficult obstacle to build off of.

Anna Sullivan’s handout on inertia from Autreat 2012 is the most comprehensive description I’ve found of inertia, and takes the time to break down why it is in fact different from laziness or poor decision-making, and how it is possible for someone to not do something they actually want to do (personally, I have now or have had in the past significant challenges with four of her examples: I cannot make arbitrary choices, I used to struggle a lot with breaking a large task into smaller pieces, I cannot put myself into a desired mode of operation on demand, and I find it very difficult to move from a low-energy to a high-energy state). Reading through her list of practical tips was insightful as well – although I’ve stumbled upon a lot of those strategies myself, having them articulated objectively makes it easier to remember and practice them in the future. (If you click through to the article, note that the abbreviation AC refers to “Autistic and Cousins”, including other neurodivergent groups and individuals in the discussion).

Are you an inertial person? How does it affect your day-to-day life?

 

Posted in musings

it is not surprising that those who neglect the Mother of God also demean and objectify womanhood

Posted on by kristinabean

A toxic strain of misogyny dwells within Christianity, an infection that pretends to be part of its host. It makes women out to be spun glass or precious china – beautiful objects, of great value and worthy of being protected. Notice that this analogy, while purporting to elevate women, actually paints women as objects, not persons, and portrays them as being unable to protect themselves or others who they love or who are vulnerable and in need. It limits the acceptable competencies of womanhood (i.e., from fighting to nurturing) and removes agency and autonomy from women.

A particularly egregious article from the well-known ministry Desiring God has by virtue of its poor writing made this misogyny more blatant than is typical (or, likely, than was intended). First, the author writes that “our God, our nature, our love must firmly say, You are too precious, my mother, my daughter, my beloved. It is my glory to die that you may live.” Here part of the true reasoning behind the overprotective platitudes is revealed: the pride of men is at stake, and it is a fragile thing! Far be it from these men to endure the long years of loneliness and deprivation following the death of a loved one; no, for them it is the single shining moment of a glorious death that they crave, that though the women they leave behind might suffer and be forgotten, they at least might be remembered and praised for their valiant bravery. No matter that if they had fought together, this man and his mother (or daughter, or beloved) may have both escaped unscathed, or more effectively protected their children or neighbors. The heroics of the man would be diminished, his glory tarnished! May it never be!

I (and I believe I speak for most women here) have no desire to be the token object by which a man’s glory is elevated, a precious thing but a thing all the same. Womanhood complements manhood that the two might fight the battles of life hand in hand, and they are not so dichotomously opposed that is must always be the men who die in glory and the women who remain at home in silence and tedium. The strength of manhood grows more patient and steadfast when tempered by the daily tasks of nurturing and maintaining a family and home; the strength of womanhood gains sharpness and fire when allowed to whet itself on the battlefield (whether philosophical, political, or physical). Though cultural traditions have often mandated otherwise, God has given to some women – like Deborah and Joan of Arc – a vocation of war and public ferocity; and He has similarly given to some men, though their names may be lost to a history that treasures only moments of flashy glory, a vocation of tenderness and private service.

The unfortunate article in question, however, does not content itself with this first statement of objectification. In the concluding paragraph, the author states that “God’s story for all eternity consists of a Son who slew a Dragon to save a Bride.” Conveniently, it seems, he forgets or ignores the great foremother of that Son, of whose seed – not of Adam’s seed, note – the Lord promised that the Savior would one day come. Conveniently again he forgets or ignores the Mother of that Son, who suffered the ignominy and shame of an unwed pregnancy to bear Him for the world, who raised Him in poverty and exile to know and love the Scriptures, who protected with her own body the Savior who that Dragon was waiting to devour. In His person, Jesus united deity with humanity, and though He took the form of a man, He ensured in the person of His Mother that womanhood was not omitted from the salvific narrative, a mere passive item to be protected and preserved. In her, womanhood also fought against the temptations and forces of Satan, and by her obedience and faith – by her willingness to be thrown into the center of the battle for the souls of all humanity – the Son of God was able to be the Son of Man as well, and so die and rise again to bring life to us all.

Of course, it is so much easier to forget about Mary. She comes with theological baggage enough to make any Protestant uncomfortable, especially the Reformed persuasion at Desiring God. But when we write her out of the story, we run the risk of writing out womanhood in general, from social and cultural mores as well as from the life of faith. You can keep your precious china, locked away in your home, safe from the dangers of life until it fades and grows brittle with the years of disuse. Let me instead be a woman like Mary, if I can dare to even dream so high – a woman like Deborah, like Joan of Arc, like Catherine of Siena and Teresa of Avila, like the saints who fought for the faith and the martyrs who died for it; I am like them a woman, a child of God, and I refuse to be objectified.