Category: Help!

Need Your Help: Stories of Equal Access

I need your help with getting a door unlocked.

I’m a parishioner (and at last check parish council member) at a large and historically-significant parish.   Thanks to renovations over the years, there are three wheelchair-accessible entrances feeding the parish church.  Unfortunately, since November of 2017 all three of those doors have been locked.  The only way to get into the building during Sunday Mass or Saturday Confession is to either walk up a short flight of stairs (seven if I counted correctly) or wait around on the sidewalk hoping to flag someone down who will go unlock an accessible door for you.

Unfortunately, the pastor of the parish doesn’t seem to understand that it isn’t okay for someone with a disability to have to make advanced arrangements in order to be able to get inside the building for Mass or Confessions.  He’s otherwise a fairly stand-up guy, but he seems genuinely shocked that I would be angry about this issue.

I’m not above launching a massive public shame-storm, but that’s a weapon of last resort.  What I’d like your help with is attempting to show Father (and I tell you again: he is otherwise a pretty sane guy) that equal access matters.

Here is a form where you can share your story.  Can you share with him an example (or multiple if you’ve got them — fill out as many entries as you’d like) of how equal access, or lack of it, has affected your life?

My plan is to pass on to him your stories so he can see, person by person, just how painful it is to be the one stuck out on the sidewalk wondering how you’ll get in.  I’ll also put in a Mass intention for the collective intentions of those who share their stories (so Father L. gets to pray for you, cause that’s his job), and of course I’ll pray for you individually and I think he will too.

I’m not looking for angry.  He’s gotten plenty of angry from me, and believe me, I’m not as nice in regular life as I am on the internet.  I’m looking for your personal story of how being able to participate in parish or community life made a positive difference for you or someone you love, or how being excluded by needless barriers did the opposite.

The reality is that barriers keep people out.  After a year and a half of locked doors (in a previously accessible parish), the only regulars with disabilities are the few who are okay with the new status quo as second-class citizens.  Everyone else has disappeared.  If you showed up as a tourist (the parish receives many out-of-town visitors at weekend Masses), you’d follow the signs to a locked door and maybe succeed in waving someone down, or maybe just give up and move on.  As a result, Father L. no longer sees the people who are most affected by his decision: You’re all gone.

I need you to make yourself visible to him again.

Thank you so much.

I’ll post updates as I get them.  Also: If you choose to let me share your story (and only in that case — opt in or your story remains completely private), I’ll pick a few to post here and elsewhere, so that your voice gets heard far and wide.  Thank you!

File:No Accessibility - Alternative Handicapped Symbol.svg

Image: No Accessibility Icon, courtesy of Wikimedia, Public Domain

Do You Have the Hathaway’s Van?

There are so many other needs out there, but I want to write today to see if anyone has a van for the Hathaway family.  Readers will remember Josef Hathaway and Frank the dog. (Where did the pictures go on that post?  Yikes – technical problems.  Hmmnf.)  Josef’s father John has Marfan Syndrome and uses a power wheelchair for mobility (including lots of dog walks.)  Their current van has over 260K miles on it, and has reached that point where even ridiculously frugal people like the Hathaways must accept it’s time to replace rather than repair.

They are fundraising, but we can think of many other dire situations where only cash donations will do — this is not one of those situations.  The good news is that somewhere out there is the actual van that the Hathaways need.  I’m asking you to please pray for the donor of this van.  If you happen to own the van, now’s a good time to talk to the Hathaways about how to get it ready for them — note they’ve fundraised towards the cost of getting the wheelchair lift installed.

What the van is like:

It’s probably really ugly.  You’re having a hard time selling this van, and honestly you’re not sure it’s worth the trouble.  Good news: The Hathaways DON’T CARE WHAT IT LOOKS LIKE.   The Hathaway Family has been voted The Family Least Likely Of Anyone On This Planet To Care About Appearances.  They aren’t like that.  At all.  Ever.

It does not have mold or mildew problems.  Mary (Mrs. Hathaway) has MCAS, so this feature is super important.  A stripped-down work van, in contrast, might be ideal.

It can be made to seat six (including the driver).  Remember, even if the van doesn’t have seats now, they can be installed using the fundraised money.  The four Hathaway children are all old enough and physically grown enough to sit safely in adult passenger seats.

It can accommodate a lift for a power wheelchair.  Again: This is something the Hathaway’s fundraising can cover, as long as the van itself shows up.

It is mechanically reliable.  The Hathaway’s income (from work, for those who are wondering) puts them just above the threshold for many aid programs.  Old and ugly are AOK, but frequent or expensive repairs are a significant strain on the family.  They do not live in an area where it would be realistic to walk or get a ride home if the van broke down.

 

The Hathaways live in the Augusta, GA – Aiken, SC metro area.  If you are in striking distance of that region, someone can make arrangements to pick up the van, or you could deliver it.  They can make arrangements to have you donate the van through a local 501(c)3, both so that you can be assured you are meeting a legitimate need that other sane people have assessed, and so that you have the paperwork you need to deduct the value of your donation.

If you own this van and are ready to donate, you can contact John and Mary directly via their fundraising page, or find them at this blog’s discussion group.

If you know people who might have a line on a van, please share this info with them.

Everyone else: Please just pause and say a short prayer on behalf of the Hathaways and their many needs.  God will sort out the details.

Thank you!

John & Mary Hathaway

Photo of John & Mary Hathaway courtesy of the Hathaway family.

Bleg: Name this Pain

Two interesting things happened this week:

(1) I finally met the physician I’d been referred to last October, and now I know why there was a seven-month wait on appointments.  The guy is both competent and humane (like Tod Worner, but a different guy).  I like that in a doctor.

(2) I’d been planning to tell him everything’s fine now, but actually it’s not fine.  I’ve had a wind-up of fatigue and the same kind of pain I was having last fall — it was still fairly mild on Thursday, but is getting more rather than less intense.

The purpose of this post is to try to find out if anyone else has experienced the thing I’m getting.  The rheumatologist has never heard of it, and he’s pretty experienced in his field, and he is also familiar with the types of pain associated with disorders outside his field. The internet isn’t giving up much so far, either.  But rare disorders exist, and so conceivably there are people in the world who either get this thing or have seen it in their practice.

If you are that person, my e-mail is below, scroll down to the bottom.

If you are not that person, help yourself to the blog discussion group for the purpose of general commiserating or talking about the thing you get that isn’t like my thing but you still want to talk about it.  Please do not e-mail me with those well-meant comments, because I am notoriously bad at keeping up with my e-mail as it is.

Do please share this post around, though.  There are sharing buttons below to make that easy for you.

(Please assure helpful strangers that I’m not interested in talking about religion or politics with them.  My rheumatologist isn’t really into that.  This is strictly a medical-bleg.)

The syndrome we’re talking about is this:

(a) Muscle pain.  Not joints, not skin, not your stomach or your sinuses, none of that. Feels like it’s muscles.

(b) Aching predominates, some burning, and the odd needle-like stab.

(c) Affects muscles that have been recently exercised (in the past day or two).  So usually legs, since I’m a person who walks, but if I did an abdominal workout it’ll be abs as well, if I did a lot of upper body stuff it could be arms or shoulders, etc etc.  It is utterly unlike normal post-exercise muscle soreness. Do not make me lecture you on how experienced I am with the normal stuff.  It is not that.  Not. at. all.

(d) The pain only comes on when the muscle is at rest.  (I get some calf pain with use, but let’s ignore that since it’s distracting.  I want to focus on the more perplexing stuff.)  By “at rest” I mean when the muscle is relaxed, for example if you’re sitting down your legs might be relaxed even if your upper body is engaged in some activity.  So it’s particularly noticeable when laying down during the day for some reason, or when going to bed, but it certainly does not require the whole body to be relaxed.   Time of day is irrelevant. The key factor is that the muscle that starts hurting is not presently doing any work.

(e) The pain is temporarily relieved by movement, stretching, or pressure, but returns as soon as the muscle is again completely at rest.

(So if I’m sitting and my leg starts to hurt, I can fidget and the pain goes away.  As soon as I forget to fidget, it’ll come back.  Unfortunately, one cannot fidget oneself to sleep.)

This presentation is extremely consistent.  It started intermittently about a year ago, became significantly problematic last fall, had largely gone away for six months, and has returned in exactly the same form as previously.  This consistency is why I’m persuaded it’s a physiological problem that surely other people have experienced.

Some additional notes that may or may not be helpful:

(f) There is no correlation with mental state.  Thinking or not thinking about it has no bearing on whether the pain shows up; being anxious or relaxed or distracted or you-name-it is irrelevant.

No relationship to menstrual cycle either.  I haven’t detected any other certain associations, other than fatigue and exercise.  (This prospect does not really keep me from exercising, because don’t be stupid, you need to exercise.  But the sleep-deprivation?  Yes, that will slow me down a lot.)

(g) Mine does respond to ibuprofen pretty well most of the time.  (I try to avoid taking it habitually though; I only use it if I’m really desperate for sleep.)

(h) For those who are curious, yes my dysautonomia symptoms are ramping back up as well.  So there does seem to be a strong correlation between when I’m feeling all that stuff and the pain-thing.

(i) In addition to the muscle pain, I also get random fasciculations along the same pattern, but they are not as prevalent. The muscle that is twitching is not a muscle that is hurting. (Probably because this particular thing involves muscles not hurting if they’re being used?)

(j) My diet is great and I take all the things and do all the things and present as a very healthy person.  I have a happy and enjoyable life, including a loving family and many good friends.

For those of you who don’t know me personally, I pretty much live in the present.  When something’s not bothering me, I promptly forget about it and move on and think everything’s fine now.  Therefore I’m always a bit surprised and mildly insulted when symptoms come back later. (I thought you were gone. What are you doing here? Can’t you see I’m busy?)

Anyhow: If the description in (a) through (e) rings a bell with you, please e-mail me.

I can be reached at: currentresident [at] fitzes [dotcom].

Put something really obvious in the subject line such as answer to your bleg on “name that pain”, or I’ll accidentally delete you as spam.  I get a lot of spam, so if your subject line is “hi” or “help” or “about your blog post” or “hot Russian singles want to sell you cheap Canadian Viagra” you’ll be cast into the outer darkness.

Thank you!

Jen.

 

File:(Army Hospital Operating Room, Pepperell Manufacturing Company) (11179190325).jpg

Photo:By SMU Central University Libraries [No restrictions], via Wikimedia Commons

 

Lent Day 43: Not Doing It

Wednesdays are traditionally the glorious mysteries.  I finally got back to praying the Rosary today after a gaping hiatus caused by a succession illness (it is a physical act, and thus requires one or another physical abilities), chaos, and inertia.

What was on my mind as I prayed was my inability to accomplish certain tasks before me, and thus my reliance on God to take care of them.  This is a good problem, because relying on me is not the wisest course, and in any case the tasks are God’s.

Here is a miracle, to give you an idea of the scope of the whole thing: I made a craft.  Not just any craft; one that required both bright colors and straight lines.  Also, I had to do it with supplies that I didn’t have spares of, which meant everything had to be done exactly right the first time.  No sane person assigns me a job like this.  Just never.

So anyway, I get around to the fourth glorious mystery, the Assumption of the Blessed Virgin Mary.

Do you know what our Lady did during that mystery?

Nothing.

Just laid there.  Didn’t lift a finger.

God did it.

This seems to be the way it works.  Want me to conceive the Messiah? I can’t do that Lord, but however you want to handle this go ahead.  Out of wine?  Son, could you take care of this please?  So you’re saying the plan is that you’re going to die on that cross–? I’m just gonna stand here, and you figure out what the system is.

It’s not that Mary does nothing.  It’s that she does only the part she can do, and lets God worry about the rest.

 

***

Request: If you have a charism for bringing empty jars to the attention of our Lord, please consider joining the newly-formed Catholic Evangelization and Discipleship Intercessory Prayer Team group on Facebook.  It’s a closed group, but any member can add new members.  If you are in the work of discipleship or evangelization and would like people to pray for your mission, please join and post your requests.  (Also: Introduce yourself and I’ll add you to the pinned post of who’s who at the top.) Thank you!

 

File:Albert Cornelis - Assumption of the Virgin - ES BRHM BPV 009 12.jpg

Artwork courtesy of Wikimedia [Public Domain].

 

Add to Your Rolodex: Sean O’Halloran for Film, Editing, Photography, Sound . . .

I rarely blog about it, but a few readers know that I sometimes take on private writing or editing projects.  Most recently I got to work with Sean O’Halloran from SO’ Creative on a film project for a small parish group.  We were both working pro-bono — he did the filming, I was the primary author on the script.

Lesson learned: This is a guy you want on your short list.

He doesn’t monkey around.  Even though he was working purely as a volunteer on this one, he was 100% professional.  I’m not sure Sean even knows how to do something halfway.

He’s good at bringing your idea to life.  Sean took everything the group brought to the project, and then he worked with the team to help them achieve their goals.

Some examples of how perfectly he did this:

  • I had a basic script, but no clue how to turn that into a screenplay — so Sean took my draft and converted it into a set of working documents that could be used on the set.
  •  The parish group had a good director on the project, Carol Pelster from Catholic Playscripts; Sean had no trouble working with her on the set, understanding the vision she had for the film and what sorts of extra shots to propose to capture that vision.
  • As the group was filming, when the actors would improvise bits of characterization, Sean knew how to direct the all-amateur cast so that their ideas read well on film.

It never ever felt like The Professionals Have Arrived, Get Out Of The Way.  The entire process was more like, “We know what we want, but how do we get there?” and Sean helped the group get there.

You won’t meet more gracious people.  I run in some of the same circles as the O’Hallorans, and I’m continually impressed by how down-to-the-bones courteous this family is.  When I go to an O’Halloran event, I’m in awe at how seriously Sean and his wife Tracy take their work of hospitality.  On the film set, Sean was disciplined and professional, but always completely calm, patient, and polite.

Sean donated an enormous amount of time to this parish project, and when I spoke to his wife about how the group could thank him, she said, “As many referrals you can send his way as possible!”

To see if the kind of work you need is the kind that he does, scroll down on the SO’ Creative website and click through on each project-type to view the corresponding portfolio.  Edited to add: You can also view some of Sean’s graphic design work at the SO’ Creative Facebook page.  Tracy gave me her quick list of the kinds of projects he does most:

  • Graphic Design
  • Photography
  • Editing
  • Retouching
  • Sound Design
  • Videography/Cinematography/Director/Producer

Sean takes on projects of all kinds.  In addition, Catholic readers should know that the O’Hallorans are faithful, committed Catholics — so if you are working on a project that involves the faith, Sean is in a position to make sure your message comes across clearly and accurately.  Give him a look, and please recommend him to your friends.  Thanks!

 

File:Secretary at typewriter 1912 (3192197470).jpg
A rolodex is a thing that was invented to make this lady’s life easier. It did what your “contacts” list does, except that it still works even when your phone isn’t charged.

Photo by Snyder, Frank R.Flickr: Miami U. Libraries – Digital Collections [No restrictions or Public domain], via Wikimedia Commons

Time for a New Novena: What’s Vexing You?

The Nine Annoying Things novena has been very successful, but we need to take it up a notch.  TEE was normal (for me – nothing there that should be causing my problems, I’m told), and we’re waiting to hear back on the labs measuring arterial blood gases.  Follow-up appointment is on the 26th, so that gives you a perfect nine days of vexation between now and then. 

Because this situation is more and more vexing by the moment.

Which means we need to invoke: Mary Untier of Knots.  (Warning: If you click the link, it plays music.  Turn your volume down first.  I just went with the first link I found.  Sorry guys. St. Google could help you find a different link if you aren’t already familiar with this particular devotion.)

Advanced pray-ers, have at with rosaries and chaplets and everything else in your arsenal.  Junior team, here’s how the Nine Vexations work:

  • Identify something vexing. An unsolvable problem.  A thorny situation.  Anything that’s too big for you.
  • Invoke the help of Mary Untier of Knots for your cause, and offer up your vexation for mine.  She’s Mary. She can help more than one person at a time.
  • Repeat nine times.  If your life is vexatious, you might have nine different vexations.  If your life is particularly tranquil, you might just have to pray nine times over for someone else’s vexation.  Any kind of mathematical arrangement is fine, and in any case it isn’t a math quiz.
  • Just like the Nine Annoying Things, you’re allowed to offer up your vexations retroactively.  We don’t do scrupling around this castle.

Thanks everyone!  I haven’t dropped dead and I’m still sane, mostly, so we know your prayers are being heard.

Bleg – Starting High School Homeschooling Mid-Year

From a reader in the comboxes:

Hi Jennifer,
We have decided to start homeschooling mid year for our son who is in 10th grade. He previously attended a private high school.
I am a newby and i am looking for structure without stress.
Any ideas?
peace~anne

Any suggestions?  Post in the combox or at your place and leave Anne a link so she can find you, please! 

Rebecca Frech I am talking to you.  Bearing, you’ve got a mind from these things, speak up. 

Everyone, Who else should we tag? Darwins?  Brandon? Anna? Christian? Anyone?  Bueller?

***

My thought would be to take his course load from school, and do a subject-by-subject picking of a decent text book?  Something like this:

Math:  Pick an appealing program, ideally something that uses DVD or computer instruction so you aren’t doing it yourself.  Figure out where to start mid-year by doing sampling of the end-of-chapter questions until it gets to new stuff.  (You may need to back-up and review select topics from early chapters that the school was going to introduce later in the year.)  If money is tight, math books is where I’d risk the biggest investment, if you come across something that is good but expensive.

Science:  Do part 2 of his current-year subject (biology probably?), using a text book that meets his general aptitude.  As you read reviews, you’ll hear about some that are more rigorous, some that are “too easy”, etc.  Try to aim for a ‘just right’ for his science abilities, challenging enough to be interesting, but not overwhelming.   If he’s already in chemistry, either continue with it if he’s strong in the subject and knew what was going on, but if he was flailing, abort that mission and proceed with a different subject for the second semester — either morphing in “physical sciences” or going with something like astronomy (just do the first semester of a year-long program.).  I would not try to remediate Chemistry mid-year.  This is the second subject I’d invest in, in terms of quality of materials.

History: Pick up where he left off, time-wise, and just keep on moving.  This is low-stress.  Pick a book or books he likes, and have him write a paper a week (the infamous 5 paragraphs) on what he studied that week.  If there’s no final exam (for example if you just do library method, where grab books on topic and read ’em), have him do a term paper or oral presentation for his final.  If he was doing the government/economics two-semester combo, do the other subject this semester.

English:  If he was doing a particular study (“British Literature” “English Literature”, etc), you can keep going with that, or morph into a generic “English 2”.  You’re looking for a combination of literature study (reading good stuff and thinking intelligently about it), plus vocabulary practice from a vocab book in preparation for the SAT, and a grammar book and/or composition book to work the writing/editing skills.  You may be able to just continue at home with whatever vocab book he was using at school.  I’d look around at the various curriculum providers (Kolbe, MODG, etc etc.) and see what appeals to you and fits the budget.

Cheap alternative:  Go to your library and check out Grammar Girl or an equivalent; one good beginner’s writing book written for aspiring writers (watch for foul language, there are some excellent writing books that have a touch of potty mouth); and a pile o’ classics that are of interest, and work through those for 2nd semester.  There are also some curriculum out there such as the Literacy through The Lord of the Rings and so forth, that build a one-year or one-semester literature curriculum around a single work or genre. (I have not reviewed the curriculum, FYI.)  If you find one that strikes his fancy, this could be a good way to finish out English 2 and cultivate an appreciation of literature that doesn’t involve too much penance.

Foreign Language: Your #1 concern is meeting the college-entrance foreign-language requirements.  So take into account what he’s already studied, how much time he has left, and figure out whether you need to continue with current language, or if you can start a new one, or if this is a subject you don’t need to worry about this semester.  Pick a program that appeals to you and roughly matches up to his current level.  It’s okay to do, say, “Latin 1” or “Italian 3” spread out over odd-semesters, as long as he completes the necessary units of study.  So don’t panic over this one.

You could also wait a few months and do your 2nd-semester foreign language in ‘summer school’.  Language-learning can be brain-intensive, and some students benefit from focusing 100% on the language for a time, and essentially completing a semester or year’s worth of classes in a shorter more concentrated period.  Picking the exact right book/program is not important in 10th grade second semester.  Language-learning is cumulative in a networked, whole-brain way.  Whatever he uses will benefit him, and you can refine your choice next year.  If you aren’t sure what to do, beg a free loaner book off someone to start with, and invest after you are confident of your choice.

Religion:  If you’re looking for suggestions, give us some more details on what he’s done already?  Kids are all over the map in terms of background knowledge, interests and abilities, and you want to strike a good balance in difficulty-level and topics, in order to keep it interesting and appropriate.

Other electives:  What can you knock out this spring that you’ve got to do in order to graduate / get into college, without making anyone cry?  My thought would be to pursue a hobby that he loves and would consider rewarding, ie if he loves to draw than take an art class, or if he plays sports, join a team and give him credit for PE. But I wouldn’t pursue the extras this semester when you are transitioning if it’s going to stress you out or make him miserable.  A man should be made miserable in moderate doses.

If there’s a pre-packaged curriculum that just seems like the perfect thing, go with it.  If not, compile your course of study a piece at a time.  My advice would be, when you read about the curriculum, does it make sense to you?  Can you get your head around it?  You’ve got so much suddenly on your plate, this is probably not the time to slog through an academic approach that is going to stretch your brain to snapping point.  Look for stuff that makes you go, “Oh yes, that! Perfect!”

***

Okay, that’s my guess.   Other people, correct me, hmmn?   Any personal experiences to share?  Cautionary tales?  Bits of encouragement?

Homeschool Bleg: Our Lady of the Rosary School?

Anyone have any experience with Our Lady of the Rosary School?  A friend asked for my opinion, and I know nothing.  Please share!  Thanks.

[FYI: I’m not considering them for myself.  Quite happy with our current method.  Just in case someone felt the need to talk me off the ledge . . . my friend has a very different personality and set of needs, and it looks like it might be a fit for her, if they are indeed a reputable group and all that.]

Bleg: Which Calendar?

I need a new calendar.

The current one has these features, which must stay:

  • Week-at-glance
  • 6.5″ x 9.5”, and not fat.  Fits in a purse.  I could go as large as a spiral bound notebook, depending.
  • A place to stuff odd papers.  I guess I could duct tape one of these on, if I find the almost-perfect calendar.
  • Punch-dot corner thingie so it’s easy to find where you are (some other equivalent technology is acceptable in theory).
  • Not silly expensive.

I don’t need to impress anyone. I don’t need it to inspire or entertain.   Ideally it would not have goofy cartoon characters on it.  It can be academic year or calendar year or tax year or whatever.  But here’s what I do need:

Lists.

The multi-tasking around here has exceeded the capacity of the current calendar.  I need a place I can stick a grocery list and about ten different independent-of-each-other to-do lists.  They are not the ready-made lists that come with “Family Organizers”, unless your family organizer has pre-made tabs for “Manuscripts to Edit” “Notes – Book A” “Notes – Book B” . . . “Catechism Prep” “Creatures Needing Medical Attention” “Figure Out Why The Tomatoes All Rotted” etc.

The all-purpose running to-do list isn’t covering it any more.  So I guess I’m looking for one of those binder-ish calendars, that lets you can add in your own tabs and sections and stuff?

(Curiously, my mother had one of those by the time she was my age.  Go figure.)

So:  What do you, or your spouse, or your secretary, or that other sort-of-pulled-together person you know (but not the super-organized neat-n-tidy one) like to use?  Recommend away.

Thanks!

 

PS: I do not care about your digital device.  I will be very patient and kind if you must tell me about your little electronic love.  But I’m a paper person.  Tried digital several times, no luck. My brain is not made for that.  Paper.  Paper.