Thursday, July 21, 2022
Dear Me Letter
Wednesday, June 30, 2021
Cocoons, Chronic Illness, and FoNo
The doctor on the screen seemed to proclaim pandemic freedom
In the Pax Coronavax Mask De-Mandate of 2021.
Vaccination gives you
wings
To soar beyond
covidian quaran-time.
The jubilation among immune-normal folk coursed palpably,
With electric enthusiasm across airwaves and social media.
At last!
Smiles are back,
And those unsightly
mask indentations?
Archived with the memes
on toilet paper shortages
And recipes for
homemade hand sanitizer.
The joy was not unmixed, however.
Some of us found ourselves as deflated as elated.
Ten million Americans fell through the loophole
Referring the immunocompromised to their physicians.
Without normal (or any) immune response to vaccination,
Our wings are still waiting to emerge.
We abide in the cocoons of our homes
And the small community of healthy family and friends
Enfolding us in the wings of their immune response.
Without innate protection
Or shielding by the wider community,
The glimmer of hope of attending church in person,
Or congregational singing,
Or seeing a movie in a theater,
Or date-night dining (even on a restaurant patio)
Receded again over the horizon
Into the unknown future.
The peculiar truth that most everyone
With chronic illness, disability, or cancer will understand,
And healthy people may doubt,
Is that for millions of us
The world opened up
When it closed down.
For the first time, all worship
Went online,
And we were truly worshiping with our church
And family, united in our mutual geographic separation.
Bible studies and conferences, too,
Education from kindergarten to doctoral seminars,
Book launch events, writing conferences, movie premieres--
All those elusive, inaccessible commonplaces from the healthy world
Opened accessible doors (rather, windows) to us
Whose geography is boundaried less by lines on a map
Than by our diagnoses and disability.
The able and disabled worlds commingled,
A flash of silver lining in the terrible storm thundering around us all.
Now healthy people are celebrating the termination of worship live streams[1],
Kicking video conferences and virtual Bible studies to the curb,
Rejoicing at returning to travel and festive celebrations:
Baptisms, graduations, ordinations,
Marriages and memorials,
Bucket-list vacations.
I celebrate your celebrations,
Rejoice with your rejoicing.
Yet I also grieve.
I grieve the loss of solidarity and access
As the able world takes flight and soars away.
As you wing your way back to normal,
Remember us who lament our necessary absence
From the camera rolls and photo albums
Of even those very dear to us?
As you leave your quarantine chrysalides behind,
Remember how confinement felt,
And let that remembrance beget compassion
For those for whom it persists?
Consider leaving the window of remote access cracked open
For our disabled, homebound world
To connect with your wingรจd wanderings, your worship,
Your wonder at a world made novel by long confinement?
Remember how your isolation felt for 12, 15, 18 months,
And how worship live stream,
Zoom birthday parties,
Skype Bible studies were manna to you
In the wilderness of quaran-time?
No one craves manna meals forever,
But they are waybread and sustenance
Through the barren places
On the way to the land of promises fulfilled.
Until the pandemic is over
Or herd immunity achieved,
Or some immune booster devised to bolster
The trigger-happy immune systems with terrible aim
Like mine,
For which the least bad treatments remove bullets from the chamber of my defenses--
Until then, millions of us high-risk, immunocompromised patients
Are still questing for contentment,
Joy,
Peace,
Within our four walls
And masks
And well-scrubbed, alcohol-parched hands,
Grateful for virtual opportunities for community,
Worshipping from home in the chair or bed we can tolerate,
Taking comfort in some vaccine protection
When we leave our sheltering cocoons
For frequent medical appointments, but
Loving most of our people from afar;
Missing marriages and memorials,
Baptisms, graduations, ordinations,
Unless streamed;
Cherishing the hugs of the few who crawl under our burdens
By reinforcing the walls of our cocoons
With their own vaccinations, masks, clean hands,
And sacrificial steadfastness in covidian quarantine,
Though for their own sake they could spread their wings and soar again.
But, truly, as the healthy and able emerge from their cocoons
And launch themselves back into pre-pandemic life,
The fellowship of the suffering
Find ourselves struggling with some FoNo:
Not fear of missing out (yet some of that too),
But Fear of Normal.
Fear of being left behind by Normal.
I’m asking for a friend,
And another,
And another,
And another,
And a few more beyond that,
But also for myself.
As your world reopens,
As your protection bursts your cocoon and gives you wings,
Please don’t forget to remember us
You’ve left behind.
6/25/21
___________________________________________________________
Sources:
*Private patient portal conversation with my rheumatologist
*”It Isn’t Over for Us” USA Today article
*CDC guidelines for immunocompromised patients after vaccination
*American College of Rheumatology clinical guidelines regarding COVID-19 vaccination
*The highlight reel of the above guidelines
*Excellent list of patient-focused resources from the American College of Rheumatology
*methotrexate and vaccine response
*what immunocompromised individuals should know after vaccination
*what immunocompromised individuals can do after vaccination
Friday, August 7, 2020
A Decade of Crumbs
"My nightmare is someone else's survival guide," said stroke survivor Kathryn Wolf in the Desperate for Jesus retreat livestream.
"Tell the story of the mountain you climbed. Your words could become a page in someone else's survival guide," wrote Morgan Harper Nichols on her Instagram feed.
Grace grows best in winter. Crosses are a part of our communion with Christ. There is no sweeter fellowship than to bring our wounds to Him. A heavy heart is welcome with Christ. The Lord has fully repaid my sadness with His joy and presence.... Troubles come through His fingers, and He casts sugar among them.... The heaviest end of the cross is laid upon our strong Saviour.... Glorify the Lord in your suffering and spread His banner of love over you. Others will follow you, if they see you strong in the Lord (The Loveliness of Christ).
Saturday, May 10, 2014
When Your Friend Is Ill. . .
As someone who has needed and received much gracious, generous help over the last four years, and also as someone who has loved and longed to help friends in need who lived far away, may I suggest some ways to help when your friend is ill, recovering from surgery, or experiencing some other long-term family crisis which is too much for a household to bear on its own?
- Pray, pray, pray. When someone tells me, "I just wish I could help," the biggest request I have is prayer. I can't fix my body; you can't fix my body; the best doctors can't fix my body, although they may be God's instruments. Only God heals. Only God restores. Believers have the awesome and precious privilege of storming the gates of heaven on behalf of our loved ones (and even strangers) in need. A prayer written in an e-mail or card can be read by the sufferer when (s)he needs an extra boost of hope. Praying with the sick person is an extra-special gift. Your prayers are a blessing, and they really are "doing something to help," even if it doesn't feel like it. Any suggestion to the contrary is not from God.
- Encourage. Send a note, a card, a text, or an e-mail. Share a Bible verse or song that helps you through hard times. If your note doesn't expect a response from the suffering person, so much the better. People confined to home or hospital by illness often feel forgotten. Sometimes out of sight is out of mind too. Your words say you remember me. Your voice-mail tells me I am not alone. God has given me a few cheerleaders who speak His truth and encouragement into my life on a regular basis, and I can't express how much they help me carry on.
- Hug, if you're within arm's reach and it won't cause pain. Be present. Medical treatment involves a lot of uncomfortable, impersonal touch. A hand held or arms around shoulders are medicine for soul and body alike. If you do visit, and if visitors are even allowed or recommended in your friend's case, it's often best to limit the time and avoid overtaxing the patient. Presence is often more important than knowing the right thing to say.
Caveat: if you think you might be ill, or if you have a sick family member, please stay home until you're well. Immune systems are often fragile after surgery and in prolonged illnesses. The patient will understand if you have to cancel a planned visit or gift of a meal in order to keep germs away. - Laugh. More and more research shows that laughter helps the body heal and reduces the stress response. Call your friend with a funny story about the kids or grandkids or pet. E-mail links to funny blog posts or video clips. Send clean, funny videos like Tim Hawkins, Chonda Pierce, or Jeff Allen; discs of old sitcoms like Andy Griffith, I Love Lucy, Dick Van Dyke; or more recent series like The Cosby Show or Home Improvement, if your friend likes that kind of thing. We laugh a lot at Mythbusters, too. Comic strip anthologies like Calvin and Hobbes, The Far Side, Peanuts, or Get Fuzzy might also bring a grin. You likely already know what puts a smile on your friend's face better than I can tell you.
- Feed. If you are nearby and enjoy cooking (or picking up take-out), bringing a meal is often welcome. In my particular case, if you ask us if we need meal help, we'll probably say no, we're doing okay. And we probably are. With just the two of us and a good microwave, we can work out simple meals even when I'm out of commission. But if you say, "I'd like to help with a meal. Is that okay? What night works for you? Is there anything you don't like or can't eat?" we are so grateful. Pizza or Chinese are just fine, as is a rotisserie chicken with a bag of salad and rolls. It doesn't have to be fancy or even homemade to be a blessing.
If you are not nearby, or your time or skill set prohibits cooking, or if your friend has lots of particular dietary needs which are difficult for an outsider to accommodate, restaurant gift cards really help, too. Search for restaurants around your friend's home to make sure a particular chain is easily accessible to him or her. If your friend has food allergies or gluten intolerance, ask your friend where (s)he likes to dine out, or go with a place you have eaten together. Again, fancy is not the point. Subway, Wendy's, Chick Fil-A, or Papa John's help out just as much as something fancier. - Assist. If your schedule allows you to offer help with rides to the doctor, grocery shopping, laundry or cleaning help, childcare, picking up library holds or prescriptions, and so on, prayerfully consider how you can help. Ask your friend if you may help with _____ and when he or she needs the kind of help you can give.
That said, please don't get your feelings hurt if your friend declines. The family's needs may be quite particular or complex, for example regarding food choices, product fragrance, transportation needs (kind of seat, wheelchair ramp, etc.), or quiet and protection from noise and people interaction. Even if your friend must decline your offer of help, it will mean so much that you extended it. - Give. If you are so led and your means permit, gift cards to Amazon can help with everything from books, music, and movies to help the convalescence pass cheerfully to home delivery of household, nonperishable food, and over-the-counter health items. We use Amazon frequently to buy bulky, heavy things (like paper goods, dog food, and cleaning products) I physically couldn't transport from the store by myself and for some supplements and medications we take on a daily basis. Drugstore.com also helps us out a lot and reduces my errand load. Some localities have grocery delivery services like Artizone.com which would allow your friend to do his or her own food shopping with minimal exertion at home. For diversion during a confinement, Redbox video rental gift certificates may also be welcome if a healthy person is available in the home to pick up and return the rental.
If special assistance equipment is needed, for example a wheelchair or scooter, and you have that item available to lend, that may be a great help to the family, but again, please give the patient freedom to decline the offer without offense.
Illness is expensive. Gift cards to your friend's pharmacy of choice may also be a great help. We primarily use Target, but in the United States Walgreen's, CVS, and Walmart are also popular pharmacy choices, as are the major grocery chains and big box stores. If your friend must travel frequently to receive care, a fuel gift card or airline miles might help. In the case of severe health crises on the scale of cancer or stroke, fundraisers (with your friend's permission, of course) or simple monetary gifts to help defray your friend's expenses are another possibility.
Friday, August 10, 2012
Five-Minute Friday: Connect
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community...
CONNECT
They call it the Web, a complex, invisible network of computers and databases. It's more than that, however. Complex and invisible it may be, but it connects people: real people with real prayer requests; flesh-and-blood people who send cards, text messages, and tokens of remembrance.
The greatest blessing of two years of blogging for me has been the people scattered around this World Wide Web, its threads connecting me to others in the sisterhood of chronic illness, another with a passion for prayer and the revival of God's church, another who is a delight and surprise in how alike we think and respond to life, another who is refreshingly different in her energy and boldness, others who share (and enable) my love of the written word. The threads of the Web have traversed state boundaries and oceans and broadened my world in ways I never thought possible.
Some while back, Allen looked at the glass cabinet door where I post the Christmas card photos and leave them for an embarrassing amount of time beyond the holidays. He pursed his lips and silently shook his head. When I inquired, he replied, "I just can't get over the fact that we've never even met half of those people."
Thank you, crumbles, for connecting your stories to mine. You are a blessing, and I thank God for you daily.
~sharing with Lisa-Jo Baker's blogging community, where you can read many other offerings on the word of the week~
Friday, April 27, 2012
(in)RL This Weekend
In case you didn't know, the ladies at the (in)courage blog have put together a Web-based conference to offer Christian encouragement to women at a very low cost. You don't even need to leave home to attend. No childcare, what-to-wear dilemma, packing bags, or airport security required.
Today's material streams again at 5 pm and 8 pm (CDT), and the rest is available at viewers' convenience for 48 hours beginning at midnight tonight (or technically Saturday morning). It's not too late to register here: http://www.inrl.us/index.php. If community, friendship, and choosing joy are areas you struggle with at all, today's session will be time well spent. (Snacks, tea/coffee, and tissues recommended.)
Monday, March 12, 2012
One More Chorus of Thanksgiving
~finishing this second round of physical therapy appointments
~relief of knee pain
~finishing the course (though not all the homework yet) for Mercy Triumphs, the new women's Bible study on James
~happy surprise of tea prepaid by the stranger preceding me in the drive-through
~so many shades of green
~Crayola big-box color returning to the landscape: white, pink, lavender, lilac, fuchsia, yellow in all their variations
~finches returning to the feeder
~honest correspondence
~text message prayers
~grace for the undone tasks
~the instant fellowship of prolonged illness and mutual prayer
~hoping for one another
~change, signs of life and growth
~turning a beautiful new page in a friend-made calendar
~coffee and Spanglish in the home of a neighbor often encountered while walking our respective dogs
~hope and healing growing in a friend's life
~happy writing with a new pen recommended by a friend (such a fine point! who knew?)
~familiar stories, happy endings
~first steps towards a change in medical care
~filling out forms, reviewing the big picture
~Allen ill with cough and cold
~strength to give care and pick up slack
~protection from developing his cough
~back to his old self
~walking into the store from 70F, walking out to 50F (no, I wasn't in there that long)
~a quiet day at home with no appointments or calls after a demanding, busy several weeks
~rainy Saturday
~one last treatment to try for lupus chest pain
~waiting
(from the gratitude list, #5100-5127)