Category Archives: Disability

Please help us get a new van.

In 2008, I got my first motorized wheelchair, and we were blessed with an opportunity to buy a twice used 2000 Chevrolet Express 3500 wheelchair van, which was first a prison van and then a medical taxi (I call it our “Paddy Wagon,” since the expression came from stereotypical Irish cops collecting groups of stereotypical Irish drunks in police vans).
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The van has served us well for almost 9 years as our primary vehicle.  “We’ve” had to put some money into it to keep it going, but when it all adds up, it was less than we’d have paid even for a regular van in payments, much less for a handicapped van that can fit our family.

Me and kids at Roper

Me and my kids in 2013, after my aortic graft surgery

Our economic situation simple: we make a little less than enough to get by in modern America.  Unless I should obtain the time and inspiration to write a best-selling book, we strike the lottery or get a really good  investment, we’ll never make much more than we do now.
So when a major expense arises, we need help.
Every few months, something malfunctions in the van.
We had to purchase a second vehicle, using up the small amount of room we had in our budget to add another monthly payment, so we only have to use the van when we need the power chair and so we have a backup when it fails.  The very day we went to pick up the “new” car, the lift stopped working.  When my abdominal aneurysm ruptures or requires surgery, if I survive, I will most likely lose my ability to walk completely.  In the meantime, I need to be able to keep strain off my aorta to delay that surgery as long as possible.
It won’t be long before our eldest daughter has to use a scooter or power chair–technically she already should because she subluxes her ankles every time she walks very far, but we can’t get insurance to pay for one.
As communities, Muslims, Mormons and Evangelicals seem to be very good at rallying around their members.  We Catholics, as a community, need to show the same generosity with ourselves as we do with strangers, to provide the “safety net” that keeps people from falling completely into destitution.  On an individual basis, we have many wonderful Catholic friends who have helped us more than we can ever thank them for.  We know someone out there can afford to help us.
We’re hoping to get a used, 2015 or 2016 Ford Transit Wagon XLT 350, medium height, for around $25,000.  I figure we can modify it ourselves for around $3000-5000.
So accounting for fundraising fees, taxes, etc., we’re trying to raise about $30,000-35000 just for that, though if a generous benefactor wants to help with about $80000 in other expenses we expect to face in the near future, we’d be very grateful.  If someone out there reading this happens to own a car dealership or know a car dealer (I recently heard a rumor that a major Catholic donor in our state owns a dealership), I’m going to be bold and ask if, in the name of Our Lord, you could please donate a van directly?
Please share this post. Please share the link to our fundraiser.  Most of all, please pray that God opens people’s hearts to share, and that He profoundly blesses all those who have helped us.

Please click here to donate.

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Yes! Here, at last, is my understanding of Suffering

For the past couple days, I’ve been listening to the audiobook of Brother Lawrence of the Resurrection, OCD’s Practice of the Presence of God.

A forerunner of St. Therese’s Little Way, whose short collection of letters is often identified as a perfect example of Discalced Carmelite spirituality, Br. Lawrence has never been able to be elevated to the altar even as a Servant of God because we know so little of his life.  Like Thomas a Kempis, and the housewife in C. S. Lewis’s Great Divorce, I think his obscurity even in the eyes of the Church is ironically a sign of his great Sanctity.  Br. Lawrence’s 11th letter summarizes exactly my view on the meaning of illness, and what I pray for when asked to pray for someone who is ill:

Eleventh Letter: I do not pray that you may be delivered from your pains; but I pray earnestly that God gives you strength and patience to bear them as long as He pleases. Comfort yourself with Him who holds you fastened to the cross. He will loose you when He thinks fit. Happy are those who suffer with Him. Accustom yourself to suffer in that manner, and seek from Him the strength to endure as much, and as long, as He judges necessary for you.
Worldly people do not comprehend these truths. It is not surprising though, since they suffer like what they are and not like Christians. They see sickness as a pain against nature and not as a favor from God. Seeing it only in that light, they find nothing in it but grief and distress. But those who consider sickness as coming from the hand of God, out of His mercy and as the means He uses for their salvation, commonly find sweetness and consolation in it.
I pray that you see that God is often nearer to us and present within us in sickness than in health. Do not rely completely on another physician because He reserves your cure to Himself. Put all your trust in God. You will soon find the effects in your recovery, which we often delay by putting greater faith in medicine than in God. Whatever remedies you use, they will succeed only so far as He permits. When pains come from God, only He can ultimately cure them. He often sends sickness to the body to cure diseases of the soul. Comfort yourself with the Sovereign Physician of both soul and body.
I expect you will say that I am very much at ease, and that I eat and drink at the table of the Lord. You have reason. But think how painful it would be to the greatest criminal in the world to eat at the king’s table and be served by him, yet have no assurance of pardon? I believe he would feel an anxiety that nothing could calm except his trust in the goodness of his sovereign. So I assure you, that whatever pleasures I taste at the table of my King, my sins, ever present before my eyes, as well as the uncertainty of my pardon, torment me. Though I accept that torment as something pleasing to God.
Be satisfied with the condition in which God places you. However happy you may think me, I envy you. Pain and suffering would be a paradise to me, if I could suffer with my God. The greatest pleasures would be hell if I relished them without Him. My only consolation would be to suffer something for His sake.
I must, in a little time, go to God. What comforts me in this life is that I now see Him by faith. I see Him in such a manner that I sometimes say, I believe no more, but I see. I feel what faith teaches us, and, in that assurance and that practice of faith, I live and die with Him.
Stay with God always for He is the only support and comfort for your affliction. I shall beseech Him to be with you. I present my service.

To Hipster Dad and Trad Dad

A few days ago, Aleteia started the latest round of parents-at-mass wars by reprinting a CatholicMom.com column from last June, by one Thomas Tighe, a self-described “hipster dad,” who writes about one of those incidents I’ve blogged about before where people come up and say rude comments to parents trying their best to teach their kids how to behave at Mass.  Now, whether Mr. Tighe’s description of his attempts really qualifies as “his best” is a matter for debate but of prudential judgement.  I know, though, that when our kids were little, one of the major reasons we shunned the cry room as often as possible was to avoid the bad example of parents who brought snacks and non-relevant toys (we would always try to get the kids to bring religious books and sometimes religious toys).

Sometimes, a cry room is necessary.  Sometimes, a vestibule or a trip outside church is necessary.  Indeed, I got so used to taking my autistic son out of church that I realized at one point last year I preferred being outside, listening on the speaker.

I like the anecdote about Ven. Fulton Sheen, when a lady took a crying baby out of Mass during his homily: “Madame, you needn’t take the baby out on my account.  He isn’t bothering me.”
“No,” the lady replied, “but you’re  bothering the baby!”

Yes, parents of young or disabled children have no Mass obligation, but that is precisely why attending at all is an act of heroic virtue.

Nevertheless, I’m inclined to agree with Tighe, especially given the absolute vitriol that people were spewing in response to his column.  For example, Steve Skojec weighed in with the perspective of a “certain kind of traditionalist.”

Skojec takes the “absolute silence” perspective, including suggesting that it’s a sin to drop a book.  I’m sure he’d be deeply offended by the sound of my wheelchair or the number of times I drop things at Mass!

I wish I could get people like you to stop quoting Mark 10 as a justification for irresponsible parenting. I have always brought my children to Mass, letting the little children come unto Him…but I’ve also always reminded them that the Mass is a supreme act of worship of Our Lord on the Cross, not a friendly gathering where Jesus told the little guys cute parables. . . .

Yes, when the Apostles were complaining about children, they were mad that the children were being perfectly well behaved and wearing their blue blazers with brass buttons.  And when Jesus said you can’t get into Heaven unless you learn to be like children, He meant perfectly silent and well-dressed.

When people have offered actual help, or talked to our kids helpfully, I’ve welcomed it.  Once, when my kids got distracted by the Christmas Tree at the Christmas Eve vigil, the pastor gently said, “I realize you’re excited because it’s Christmas, but please wait till after Mass to look at the tree.” Another time, as my eldest daughter loudly proclaimed her responses at our parish, a lady behind us kept whispering in her ear.  I braced myself when the lady approached me after Mass.
“How old is she?” she asked.
“Five,” I said.
“You must have taken her to Mass since she was a baby.  I kept leaning over and telling her how impressed I was that she knew her responses.  I have a daughter who’s a nun now, and she knew her responses when she was 5, too.”
A few times, we went to Sunday evening Mass at my alma mater’s campus chapel.  We were flabbergasted when the young priest pointed to our kids as an example of how to behave at Mass!   “Those little children know how to behave at Mass better than you college students!” Then when the baby woke up and started crying, he said, “Now, see?  You’ve woken up the baby!”
I went to daily Mass there once with my son, when he was 2 or 3 but not yet diagnosed autistic.  Father asked if I wanted to lector.  I said, “What about him?”  “He’ll be fine!”   I shrugged my shoulders, got up to read, and my son started following.  I gestured to return to the seat, and he did.
My eldest daughter once got up and laid prostrate in front of the altar after a homily about kids at Mass.
She had grown up attending a monthly “Reform of the Reform” Latin Ordinary Form liturgy in Northern Virginia, and the occasional High Mass Extraordinary Form in Richmond.  When she was 2, she sang her Latin Mass parts well enough to impress a Juilliard-trained composer and choral director.
After we moved to SC, there was a monthly EF low Mass we would try to attend.  Once, when she was 5 or 6, confused by everyone being silent during the liturgy of the Eucharist, she began singing the “Salve Regina,” perfectly.  She was sitting a few rows behind me, with her godfather.  I turned to shush her, but almost everyone smiled and gestured as if to say, “she’s fine.”

A few years later, at another parish, I was sitting up front with the younger two, and an elderly couple behind us kept leaning over and whispering what I sensed were gentle admonitions to my son.  After Mass, they asked, “He’s autistic, right?”  I said, “Yes.  They both are.”  They said, “We have an autistic grandson.  We know how it is!”

But we’ve had enough nasty comments to know some people will never be satisfied.
One of the times I tried to bring my son to the low Mass, he whispered some questions but was relatively well-behaved.  Nevertheless, this older gentleman came up and yelled at me, saying, “I raised nine children, and I taught them to behave themselves at Mass!”  I really got the impression that he was as mad about my daughter’s devotion as about my son’s curiosity.  Two other ladies followed him and said, “Don’t listen to him, you’re doing great!”

I often tell the story of taking all four kids to a “Holy Hour” by myself. They’d been to Benediction many times, and knew some of Evening Prayer from my saying it at home.  I was holding the baby.  The then 6 and 4 year old were focusing on the prayers. My son was walking up and down the pews, but being quiet, as he’d done at the aforementioned college mass, which was a huge improvement for him.
They used illicit, barely recognizable, texts for Vespers and Benediction, politically correct, Charismatic and “interfaith friendly.”  At Benediction, they “voted” on which hymn to sing instead of “Tantum Ergo,” and sang “Amazing Grace.”
At the Magnificat, Divine Praises and other points, my kids said the correct translation with me.  Afterwards, the deacon who led it came up and told me how distracting my family was, and children shouldn’t be present at such a “solemn event.”

The last time we had a direct encounter, my wife was in the back with the younger two, who were both sleepy, as they often are, from their meds.  These two old ladies told my wife that our kids were distracting them by sleeping!

So, whether they’re actually being bad, or they’re actually participating, or they’re being quiet but sleeping, we’ve gotten both positive and negative feedback from strangers and clergy.

Yes, there are some people who are blessed with peaceful, well-behaved children, and like other people blessed with particular virtues, they shouldn’t lord it over others.  But there are also some whose kids’ perfect behavior can be a bit scary to the rest of us.

For the past several months, we’ve been regularly attending a Byzantine church that we have visited from time to time over the past 5 years, and I always found the kids seemed to be better behaved and attentive there.  In Advent, I suggested going to the OF Vigil Mass (it didn’t work out because we all got sick), and the kids said, “Do we have to?!”  They find the chanting both soothing and easy to participate in. They love having the icons to pray with. Like me, they find incense bothers them allergy-wise, but they also find it calming (even when they were smaller, they seemed to settle a bit at Vespers as soon as the Censer passed).  They like the community meal after Liturgy.  When there are a lot of children, the DRE gathers them and brings them up to sit in front of Father during the homily.

On Sunday, we were a bit late as usual.  It was Theophany, so there was an especially long liturgy.  I brought three because our middle daughter was sick, and my wife stayed home since I’m the one who usually does.

We stood/sat in the back.  In the second to last row, there was a visiting family–very obviously Latin Rite traditionalists.  The father and sons were all in suits.  The wife and daughters, all in dresses and veils (while veiling is traditional in the East, it’s not an “obligation,” and from my research veiling is usually avoided in the Melkite Church to avoid confusion with Muslims).   My two youngest ended up right behind them.  I was across the aisle.  My teenager was at the other end.  We’d been told to take empty holy water bottles when we came in.  So my son kept playing with his holy water bottle.  After a while, he came over and told me that he realized we had forgotten to get his morning pills before we left the house! I thanked him for holding it together so well, and took him out to the car to take his pills.  I was happy he was holding it together so well, but still trying to keep him in control.  He kept bugging his younger sister, and she kept shushing him.  The lady in the veil in front of her kept turning around and admonishing *her*.

Later in the afternoon, since I didn’t recognize the family, my wife asked our daughter if she recognized the lady.
“Which lady?”
“The lady who kept turning around and correcting you,” I said.
“Oh, *that* lady,” she sighed.  I should note that, of our four children, she’s the most resistant in matters of faith and has already developed the impression that God is a dictator Who just has a bunch of rules and wants to “get” people, in spite of our efforts to teach a balanced view of the faith.  If she grew up in one of these, “children should be seen and not heard” families, what would her faith be like?

On Melancholy: the Physiological aspects of depression and bi-polar

Last night, I posted a semi-defense of certain controversial comments made in the wake of Robin Williams’ suicide and a general suggestion of how Matt Walsh, Rush Limbaugh, Bryan Kemper and others might have done better.

Part of Matt Walsh’s appeal is that, like the early Limbaugh, he uses sensationalistic packaging to get people’s attention to pieces that are usually very thoughtful. In this case, which backfires horribly because his piece isn’t as thoughtful as he thinks, he emphasized the notion that “Robin Williams didn’t die of a disease; he died of a choice.” At one point, he says, “First, suicide does not claim anyone against their will.”

He anticipates this response a few paragraphs above, but that is precisely the problem. Mental health issues, addiction, etc., reduce or remove culpability. Now, the mentally ill person may remain culpable for what is done while sane, but the question–which none of us can answer in this life–is whether the person who commits suicide truly has control of his or her will.

People like causes. They like to have someone or something to blame, especially if it isn’t themselves. “He was depressed because his career was in the tank” is an easy target versus “He was depressed because he had a genetic condition that made it difficult to control his emotions.” That gets into a mess of problems about free will versus determinism. Then there’s the controversial, “He was post-abortive,” which I want to discuss in a separate post, but while guilt, financial troubles, or frightening medical diagnoses may contribute to mental health issues, we cannot deny that there are physiological components. Matt Walsh is right that there are spiritual components, but wrong to dismiss “chemical imbalances” as modernist mumbo jumbo. Physiological understandings of depressive disorders are nothing new at all.

It is precisely “He was depressed because of XYZ” that is “modernist mumbo jumbo,” originating with Freud’s era.  Back in the old days, instead of “chemical imbalances,” people talked about “humors.” Melancholy is usually associated with depression, though the “melancholic temperament” would be what we now call “bipolar” and possibly include even autism. The melancholic is concerned about the troubles of the world, prone to mood swings, etc. Literature’s most notorious melancholic is perhaps Prince Hamlet from Shakespeare’s eponymous play. Three major movies made of the play within a decade demonstrate different psychological interpretations of the character:

The Zeffirelli/Gibson film (1990) depicts Hamlet as bipolar, mostly manic or “rapid cycling.”  
The Branagh/Branagh (1996) version depicts Hamlet as almost sociopathic (choleric), with the melancholy a complete facade.
The Almereyda/Hawke (2000) version depicts Hamlet as straight-up clinically depressed.  

Either way, all effective writers are natural psychologists and write their characters so well that they can be readily diagnosed (always baffles me that people insist you can’t “diagnose” fictional characters because a particular health problem or mental health issue wasn’t named: people still had problems).  Shakespeare drew from the psychology of his day and also left the character open to interpretation because he was aware of the debates that existed even then.

One of the concerns Walsh, and many others raise in critiquing a biological interpretation of mental health, is the spiritual component.  Fr. John Corapi would compare it to any physical disease: you might have a genetic predisposition to something. Then you add in the component of an actual physical trauma, poor nutrition, etc. Then bacteria come into the wound and infect it.

With mental health, you may have a genetic predisposition to bi-polar, depression, schizophrenia, autism spectrum, etc. You experience traumas that other experience but they hurt you more because of your predispositions. Things that might cause a brief situational depression for anybody are devastating (or, conversely, one thrives in a crisis). Then the demons, like bacteria in a wound, come along and whisper “You’re unworthy.” They infect the emotional wound and refuse to leave.  That certainly needs to be dealt with, and most treatment programs acknowledge it.  

“Madame has moments of melancholy,” says Max in Billy Wilder’s Sunset Boulevard (1950).  Norma Desmond, also clearly bipolar (mania demonstrated by her literally insane, rambling “script” that she’s been working on for years), has made several attempts on her life, and Max has removed all the doorknobs in the house, as well as all knives and razors (“Madame got the razor from your room, and she cut her wrists!”)

If Robin Williams had shot himself, certain people would be calling for restricting the ability of mentally ill people to own guns. They cite statistics on gun deaths in America, more than half of which are suicides.  It is noteworthy that these same people objected to “politicization” of his death when some pro-lifers pointed to his status as a post-abortive father (post-abortion syndrome contributing to many suicides), or when Rush Limbaugh, ironically or inadvertently “politicized” his death by complaining about the media politicizing it.  Yet the same people would have readily “politicized” it if it had been a gun suicide.

That’s another easy cause, though, that  people look for.  They try to say, “It’s guns,” except when it’s not guns.  Nobody is talking about legal action to restrict ownership of ropes, or belts, or plastic bags, or knives or razors by mentally ill people.  The real issue there is why people must rely on the government for everything. 

A desperate person will find a means.

One last observation under this topic is the question of medication.  Some people will say, “See?  This proves meds don’t work!” or “This proves meds make things worse!”  One of the reasons it’s important to nail down the right diagnosis is that the wrong medicine really can be disastrous.  Someone with bipolar needs to be on bipolar meds, not necessarily anti-depressants or anti-anxiety meds, which can cause a horrible mania and, in turn, drastic behavior.  

Accurate diagnosis is so very important, as are accurate treatment methods.  

A funny thing happened on the way to Confession . . .

I had made a point of trying to get my family to Confession in the midst of other Saturday plans.
Then I was in bed with chest pain, so we were running late but got there around 4:45. The Confessional was dark; no sign of a priest. I noticed my wife hadn’t followed us in, and we were leaving anyway, when I found her standing by the van, the rear gate still open. There was oily fluid all over the ground, and she showed me how the fluid streamed out when she opened and closed the wheelchair lift:
Hydraulic fluid, leaking out of the pistons.
Great.
We’d “just” had them replaced, four years ago. Seems like just yesterday but forever. That was right after the second engine (for us, third for it) in our handicapped adapted 2000 Chevy Express 3500. Turns out, 4 years is about as long as those pistons last. Now I know, but while we have started budgeting for repairs, we just put a bunch of money into “regular” repairs, and she’s had to pay cash for some graduate courses. We were just starting to work on tightening the budget a bit more to save for emergencies and hopefully a down payment on a house in a year or two. We’d like to finally live in a house big enough for 4 kids sometime before they’re adults.

So, here we are, looking at another repair that could reach into the thousands. We tried Modest Needs 4 or 5 years ago, but that’s “All or Nothing.” This time, we went with GoFundMe, which takes a fee but sends the money as it’s donated.

Since Saturday night when I set it up, we’ve already raised about $470. In the morning, I will take it to a repair place and get a more exact estimate. Please pray, donate or at least share the link.
my GoFundMe Campaign

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Interesting quote from the _Compendium_

I was drafting a comment, and possibly a blog post, on the notion of “living wage” and while searching the Compendium of the Social Doctrine of the Church for what it says about “wages,” I found the following:

The rights of persons with disabilities need to be promoted with effective and appropriate measures: “It would be radically unworthy of man, and a denial of our common humanity, to admit to the life of the community, and thus admit to work, only those who are fully functional. To do so would be to practise a serious form of discrimination, that of the strong and healthy against the weak and sick”[292]. Great attention must be paid not only to the physical and psychological work conditions, to a just wage, to the possibility of promotion and the elimination of obstacles, but also to the affective and sexual dimensions of persons with disabilities: “They too need to love and to be loved, they need tenderness, closeness and intimacy”[293], according to their capacities and with respect for the moral order, which is the same for the non-handicapped and the handicapped alike.

What if you could go back in time and kill Hitler?

A powerful speech.  Even if you don’t usually watch videos online, you really should listen to this one.  It speaks for itself, especially regarding judging others.  It’s a talk by genetics pioneer, Down syndrome researcher and outspoken pro-life leader Dr. Jerome Lejeune, whose Cause is being initiated, telling a powerful story about the dangers of judging based upon appearances, and the problem of eugenics: