Facing Death . . . over, and over, and over (originally published 10/17/09)

I’m not talking about some science fiction story here.

Most adults have probably had some “brush with death” in their life by the time they reach their 30s, whether it’s a diagnosis–or possible diagnosis–of a life threatening illness, an accident, or whatever.  Even just contemplating the death of someone we know puts us in touch with our own mortality.

There are several approaches to the idea of impending death:

• “Eat, drink and be merry, for tomorrow we die” — or anything to that effect
• Making sure your loved ones know you care
• Getting very spiritual very fast
• Despair
• Working hard to get something accomplished.

What few people have to deal with is the constant awareness that, not only are they mortal, but there’s a relatively high probability they could die today.  And don’t tell me, “You could be hit by a bus.”  I get sick of hearing that response (or words to that effect).

If a person says, “Oh, no!  What if I get hit by a bus?” all the tiem, that’s generally considered being paranoid and/or phobic.

It is not paranoid and/or phobic for a Marfan, especially a post-operative Marfan with a St. Jude valve, a daily dose of Warfarin (aka Rat Poison), a brain aneurysm, and a thoracic aortic aneurysm to think, “What if I die today?”  Especially when one hears of middle-aged Marfans whose aortas dissect simply from the strain of coughing.

Today, I learned of a 16 year old girl who died of Marfan syndrome on October 9.  Her name was Madison Beaudroux.  She told her sister, “I feel like I’m going to pass out.”  She did, and those were her last words.

Every day, there’s some point where I feel like I’m going to pass out, and I often think at those moments, “What if I’m dying?”

Sometimes, I just get in so much pain that I don’t quite “pass out” or fall asleep, but I just kind of hunch over and close my eyes and stay perfectly still.  I think, “What if I die like this?” or, more precisely, “If I had just died, would anyone have noticed?”

Every day, I consider each of those above options to some degree or another.  Usually one or another predominates the others, depending upon my mood, circumstances, etc. 

Every time I get up to do something mildly strenuous, I stop and think, “What if this is the strain that pushes me over the edge?  Will this be worth it?”

What of my duties to this family God has given me?  Is it better to push myself to the limits for them and die or to hold back and be there for them?   Would I not be of more use to them as a saint in Heaven than as a cripple here on earth?
What of my duties to this body God has given me?  Is it merely a mere “coil” to be “shuffled off”?  Is it essentially a burden to be relieved from or a treasure to be protected? How to walk that line?

What of the sins I commit in thought and deed and ommission because of the strain my constant pain and fatigue put on my conscience?  Are the pain and fatigue merely the devil pressuring me to sin?  Will God show me mercy if I can’t get to Confession in time to once again confess the same bad habits and mindsets I fall back into over and over?  What if I’m not detached enough?  What if I’m just excusing myself? 

Have mercy on us, and on the whole world.

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Have a Heart: Blues Singer Robert Johnson

Robert Johnson, a legendary blues singer who died before his time, is another of the most credible “historical Marfan” diagnoses.

According to this site, he had long arms, legs and figures; hyperflexibility; lazy eye and “cataract”; and died a sudden death in a manner often described with aortic dissection. 

Another link

Wikipedia

Could people PLEASE stop saying that Benedict’s reign was “short”?

Since Pope Benedict XVI announced his retirement a month or so ago, a common meme from both his supporters and critics has been how “short” his papacy was, given that we’re used to the relatively long reigns we’ve seen in the past two centuries. After St. Peter himself, the longest reigning popes are, in order, Blessed Pius IX, Blessed John Paul II, and Leo XIII. Pius X (11 years), Pius XI (17 years), Pius XII (19 years) and Paul VI (15 years), all stuck around a while. So, yes, since the fall of the Papal States and the First Vatican Council, B16 has had the third or fourth shortest reign after John Paul I and Bl. John XXIII, and is (by approximate years) tied with Benedict XV (interestingly fitting).

So it is easy to see why, experientially, people might think that his reign was “short.” In fact, it was “average.”
(2013-33)/265 = 7.47. . . . This site somehow came up with a figure of 7.2 years as the average reign.

So, seen from *that* perspective, it’s been on the long side.

Club or Cartel? Friends or Fiends? You Decide

Back in the 1980s, a popular culture phenomenon showed the dark underbelly of capitalism. Undernearth a shallow facade of big hair and shoulder pads, and amidst distractions about love affairs, family strife and divorce, it told the story of a ruthless cartel bent on crushing any and all competition, even amidst the members’ own internal rivalries.

The members of this cartel may have been all charm and sweetness in public, but they were secretly going around breaking legs and blackmailing to crush their enemies, and it’s far time someone exposed their nefarious schemes.

No, I’m not talking about these people

I’m talking about these people:

Babysitters’ Club?! HA! More like Babysitters’ Cartel!

The problem I have with Cardinal O’Malley: Ted Kennedy

There is a lot of buzz about Sean Cardinal O’Malley, OFM Cap, who is apparently a popular choice in European circles as the next pope. O’Malley has a lot of strong points: expertise with new media, “JPII bishop,” ecumenical background, international experience/multilingual, reputation as an authentic reformer in terms of the scandal. I’m not sure about his reputation among traditionalists, except that he did perform a Confirmation according to the extraordinary form a few years ago. However, when, now more than ever, we need a Holy Father to stand against the worldwide conspiracy against life, O’Malley is not that man.

It’s bad enough he engaged in the public funeral and insta-canonization of Ted Kennedy, he even defended it on his blog.

Now, let me be absolutely clear: whether Kennedy deserved a Catholic funeral is between him and his confessor. Whether Kennedy is forgiven for his sins is between him and God. However, there is a big difference between being a personal sinner and a public heretic. There is a big difference between private sin and public scandal. This is an age-old principle of Catholicism that has been all-but abandoned since Vatican II.

In the comments on O’Malley’s blog, we see a lot of references to forgiveness–often from people whose context otherwise indicates they don’t think Kennedy needed forgiveness. This is not about forgiveness but about teaching. I certainly hope God has forgiven Ted Kennedy, because that means I have a chance. That’s not my issue.

There’s a big difference between forgiving someone and “honoring his life.” There’s a big difference between giving a quiet, private Catholic funeral to someone who should have been publicly excommunicated and giving him a public funeral with a bully pulpit on what a great public Catholic he was.

Another common comment from Kennedy’s defenders is that we shouldn’t mix religion and politics. However, they’re just as quick to say that Kennedy’s “other political positions” show him to be a great Catholic.

Another defense of Kennedy is that supposedly abortion is one exception to being otherwise Catholic in his positions, and this is also untrue.

Let’s start with those “other issues” we so often hear about in Catholics defending their support for the Democratic Party. I’ve addressed these many times, of course, but apparently people just can’t comprehend the truth.

Does the Church give a “preferential option for the poor?” Yes. Does the Church emphasize the “common good”? Yes. But the Church also gives a wide range of options on how to apply those teachings, and emphasizes that Catholics must show a certain charity to one another where economics is concerned precisely because this is a matter of prudential judgement. However, when numerous Popes, from Leo XIII to John Paul II, have explicitly condemned socialism as such, and when Catholic teaching clearly emphasizes subsidiarity, I fail to see how anyone can seriously claim the Democratic positions are perfectly in line with Church teaching. Look at the list of ideologies Leo XIII condemned as “Americanism,” and you will see the positions that “Catholic Democrats” in America have held since the 19th Century. Explain to me how that’s “Catholic teaching.”

Then there’s abortion. To hear Kennedy’s defenders, including Cardinal O’Malley, reducing abortion to “just one issue,” Bernardin-style, makes me sick. It also goes against the teaching of John Paul II in _Evangelium Vitae_, who said that abortion should be the #1 priority of voting Catholics. That attitude expresses an inherently dismissive attitude to the pre-eminent moral crisis of our day, as does the notion that condemning abortion is “just about politics.”

But even so, even if somehow we can contort the Social Justice encyclicals to support the kind of Socialism the Kennedy family supported, and even if we can reduce abortion to one concern among many, Ted Kennedy had three other major black marks, as well.

Kennedy was very publicly divorced and remarried, for one, and thus it’s no wonder he once condemned St. Thomas More for being “intolerant.” When the public divorces of people like Ted Kennedy and John Kerry are brought up, liberals like to respond that annulments are supposedly a “private” process. Well, no, the whole point of an annulment process is to ensure that there’s no scandal in a remarriage, and if a Catholic is publicly divorced and remarried, that Catholic needs to publicly announce an annulment, as was done with numerous monarchs throughout history. Otherwise, it’s just “wink, wink, nudge, nudge,” sending the message to the public that Jesus Christ’s condemnation of divorce is an outmoded rule that can be ignored.

Speaking of Catholic teachings that are morally vital to society but largely ignored, Kennedy was personally responsible for ensuring that contraception remained legal in the US by single-handedly derailing the Bork Supreme Court nomination, and *precisely* on Bork’s position that _Griswold v. Connecticut_ was bad law.

Did Kennedy ever publicly repent of these public offenses against Church teaching? If not, he shouldn’t have been publicly honored as a “Catholic” public official.

Yet if people point out these basic principles of Catholic ethics, we’re labelled angry RadTrads, and ignored.

On top of that, as far as Cardinal O’Malley goes, there’s the issue of John Kerry. Ted Kennedy may be dead and buried, but O’Malley has failed in his duty of formally excommunicating John Kerry.

Pray for the Election of Our New Holy Father

Soon we say good-bye to His Holiness, Pope Benedict XVI, Metropolitan Archbishop of Rome, Vicar of Christ, Servant of the Servants of God, etc., as he retires from the Papacy to pursue a higher calling of cloistered contemplative life.

One of my few regrets in life is that I never got one of those “I love my German Shepherd” bumper stickers. I have been a fan of “God’s Rottweiler,” the PanzerKardinal/PanzerPope, the B16 Bomber practically since I was old enough to know what a Cardinal is. 8 years ago, when he was announced as the new Pope, as soon as I heard “Dominus Josephus,” I began to jump, and as soon as I heard, “Cardinalis Ratzinger,” I was yelling, “YES!” and my hand was hitting the ceiling as I jumped for joy. I went to Mass that day or the next day, and some ladies were talking about the “new Pope”, and “Do you know who this Cardinal Ratzinger is?” and I was dumbfounded. How could any Catholic *not* know who Cardinal Ratzinger was??

Anyway, it’s been a great 8 years. Many people seem to be of the impression that his reign was “short,” given the relatively long papacies we’ve experienced since the mid 19th Century, but the average papacy has been about 8 years, and he’s one of the oldest popes in history.

We must pray for the College of Cardinals to make a wise decision. It seems to me that the new Pope needs to be able to address several issues:
1) Authentic ecumenism. I hope to live to see the day the Patriarchs of Rome and Constantinope re-communicate each other. It would also be nice to see the post-Vatican II fractures in the Church healed.
2) Tied to that: Reform of the Reform. It’s a term we’ve heard a lot from such as Pope Benedict and Cardinal Arinze, who most people say is too old to be Pope (though they said the same of Cardinal Ratzinger). _Summorum Pontificum_ was great, but we still need a reform of the New Rite akin to what Cardinal Ratzinger called for in many of his writings, something more like what _Sacrosanctam Concilium_ calls for and not what Rembert Weakland and company actually did when they hijacked the implementation of the Council.
3) Speaking out against the worldwide Culture of Death, in particular against pro-abortion Catholic politicians.
4) Dealing with “the Scandals”–both the aftermath of the exposure of endemic sexual abuse, and dealing with the network of homosexual bishops–including, apparently, some at the Vatican–who have facilitated it.

So, here is the Collect for the Election of a Pope. I’m using it as part of my Office if there’s not a Saint of the day:

Here’s a cool “Adopt a Cardinal” app: you enter your name, and it randomly generates a cardinal for you to pray and fast for until the Conclave elects a new Pope. I got George Cardinal Pell. I think Pell would be a good candidate. There are a lot of sources, even in Europe, arguing the new Pope needs to come from America or an English language country because of the Scandal. Pell would fit that category. As the head of the “Vox Clara” commission, which Francis Cardinal Arinze organized to write the new translation when the International Committee on English in the Liturgy (ICEL) dragged its feet, Cardinal Pell is an ally of Reform of the Reform. I don’t know about how he would be viewed by the Orthodox, but Pell has worked with Anglican reunification efforts. He’s also outspokenly pro-life and has made headlines taking on some outspokenly liberal priests. So Pell was one of my top choices from various names of “Papabile” I’ve seen floated around, and I was quite pleased when this site assigned him to me to pray for:

I most feel like a parent when the kids are sick

Most of my fondest memories of my parents come from when I was sick-sick, or in the hospital, or the doctor’s office.

I mean, Dad did that “typical father” stuff, like teaching me Shakespeare at 8 and preparing me for the SAT at 9.

Mom and I had great conversations in the car going to school or running errands. And she used to buy writing journals back in PA, and we would sit at Presque Isle State Park or just in our house and write, and sometimes if I was lucky, she’d share her poems with me.

Yet the first thing that comes to mind of my childhood in general, and certainly with my parents, was doctors’ offices, tests, hospitals, or just in bed with a cold or flu. After all, that was the time when it was just me with Mom and/or Dad: nothing and no one else in the way.

I have a collection of “Mary Pictures.” I keep it on my phone, my laptop, and all the desktops. I made a video of it. One of my favorite pictures was taken at my nephew’s birthday when we were engaged, and I was having chestpain, and Mary was still in the “this is all new to me, so I’m gonna panic every time he has pain” stage. I was laying there on the sofa having chest pain.

It’s something that, prior to Mary, I did quite often, but it was always one of my deep emotional pains that my body kept me from participating in so much of the “basics” of life, and I spent so much time alone in the other room. So Mary was sitting there next to me on the couch, holding my hand, and someone took a picture, and I love that picture.

So, as a husband and a father, I feel like it’s my chance to “give back” when someone’s sick. Sadly, especially in the past couple years, I’m not much use to Mary when she’s sick, especially if I’m sick at the same time. But she also might not even know about certain underlying health conditions she has if we weren’t so aware of those matters because of me.

Her POTS, mitral valve prolapse and afibrillation would still be “just laziness” or “just fatigue” if she didn’t have me to confirm, “Yeah, that pain you’re having sounds cardiological. Go to the hospital.” Ironically, just a month before she went to the hospital and found out about her heart condition 2 years ago, I had been laying my head on her chest and thinking how nice it was to hear a “normal” heart beat. I felt like I cursed her.

Allie picked up very quickly on what a bonding experience the doctor’s office is, especially since I presented it to her that way.

She had her first echocardiogram (discounting one when she was a newborn) a month or so before Mary’s first sonogram with Gianna. They let her sit in on the sonogram since she’d already had an echo (for those who don’t know; it’s the same machine; just pointed in a different spot), and she already knew how to behave at a doctor’s office. After watching her sister’s sonograms, it also made her more comfortable with her echo.

She often accompanies me when I take her siblings to the doctor or the hospital and, with one exception, she’s always been a big help, and she’s always impressed the doctors.

Then there’s Gianna, the little nurse. She’s not as adamant about her life plans as she used to be, but we still tell her she’d be a great nurse if that’s what she chooses to do.

I will always remember Allie’s first major stomach bug when she was a one year old, which was I think the first time I took her to the pediatrician for a “sick visit.” I will always remember having to give the pediatrician a detailed description of what was in her diaper–never in a million years thought I’d be able to tackle that task. When she was born, the nurse laughed at me for wearing a mask and gloves while learning how to change a diaper (of course, in addition to the whole “grossed out” thing, I was also extremely paranoid at the time about my valve and infection).

I’ve always said my real “parental boot camp” came when Allie was a little over a year old. We all slept in the same room, and we kept the baby gate up in case she woke up. She knew how to walk, and she had just learned how to take off her own diaper. I woke up to discover that she had already woken up, taken off her diaper, and made a big mess with what was inside it. I had to clean the bed, the bedclothes, the carpet and the kid.

I was also used to being able to call the cavalry in such situations. I called Mary’s aunt. I called her parents. No one answered. When I finally got in touch with someone, it was her sister: “I can’t come over; I’m at the hospital because Mom’s had a heart attack.–But dad says not to tell Mary at school.” So now I had to clean all that stuff up on my own without Allie getting into further trouble *and* get her dressed so we could go to the hospital and find out what was happening with my mother in law.

Somehow, I did it, and I felt like I’d “arrived.”

Then Gianna and Joe came along with their severe food sensitivities. . . . Another permanent memory is the time when Gianna had some kind of accident on Allie’s favorite doll, “Gillian”–which she had received from my sister the previous Christmas. Mary was like, “The doll is ruined. Throw it out!” Allie was crying. I put it in the bathroom, cleaned up the rest of the mess, threw stuff in the wash, then went back to the bathroom and used shampoo, baking soda, Oxy-Clean and elbow grease till Gillian looked like a bright new doll.

Then there was her first stomach bug as a preschooler. I was working my job in Springfield at the time, and I had to go in on Saturday morning. They’d said it was OK to bring your kids on those Saturdays, and Allie had been looking forward to it.

So Friday night, woke up in the middle of the night, throwing up. I slept on the couch; she slept on the recliner. Mary and the other two at the time stayed upstairs. Next day, she went with me to work and mostly hid under my desk. Late in the morning, she was hungry, so I got her some crackers and pretzels from the vending machine, but I insisted she try ginger ale. “I’ve already drank water,” she said. “When did you do that?” I asked. “I got up in the middle of the night and got myself a glass of water, and I held it down OK.” That’s Allie.

Three eye surgeries for Allie. A broken arm for Gianna. Another broken arm for Joe. The common cold, influenza, bronchitis, allergies, etc. Gianna’s gastroenterological tests. Allie’s various physicians. Helping Allie through her “Marfan milestones”: her first knee dislocation, her first chest pain, . . . And the thing she has that I don’t have, that worries her mother and me to death, her pectus excavatum. Every year, they test it and tell us it’s “fine” (meaning they don’t want to operate yet). Yet when you put your arms around the kid, you can feel how frail her little ribs are. She doesn’t like being hugged because it hurts. Sometimes, I lay my hand on her chest, and I feel that indentation so deep I can put my fist through it, and I wonder how there’s any room in her chest at all, and I just want to cry for her.

Then there was the time Mary called me in a panic. Allie had said, matter of factly, as she so often does these things, that she couldn’t see anything in her right eye. I came rushing home, fearing retinal detachment. I did some informal tests. I called her cardiologist and her ophthalmologist. I ruled out retinal detachment, but I got her an emergency visit to the ophthalmologist, and he said the zonules on her right lens were so loose that, while the lens wasn’t dislocated, it wasn’t focusing at all anymore, so it was completely obscuring her vision. It took three surgeries and two years to get that lens out of the way, and by then it was almost too late.

I have a problem where Allie’s care is concerned: I’m the first to want to get whatever the best things for her I can get. Technology has improved a lot in the last 20 years, and I want her to have the opportunities I didn’t for care that didn’t exist then. However, I also know what it’s like to be a “guinea pig,” and I know what it’s like to suffer side effects and complications that are sometimes worse than the problem. And I know what the stress of all this stuff is like, and how all the different things going inside the Marfan body come together to drive one crazy.

Being a Marfan is like being a patient on “House”. They give you a drug for your heart, and the drug, in conjunction with the Marfan, screws up your intestines and lungs. They give you a physical therapy method for your hips, and it makes your knees dislocate. They give you at therapy for your knees, and it makes your back hurt. They give you a therapy for your back, and it makes your hips hurt. . . .

I’m very cautious about giving her cures that may be worse than disease, or putting her through therapies that might give her undue stress, because, on the one hand, I know exactly what she’s going through. On the other, unlike her father, the kid never complains . She only complains when she’s about ready for the hospital, and if she’s not feeling well, the only way she ever shows it is by lashing out.

We used to have a regular thing. We get into the habit and then somehow get out of it. It’s called, “If a kid’s being exceptionally crabby, give ’em some Tylenol.” Allie has headaches all the time, because of her vision, and everything else, and she doesn’t stop to say, “Hey, Mom and Dad. I have a headache.” She just gets crabby and uncooperative. When we’re smart, and we think, “Maybe she has a headache,” we offer her a Tylenol, she accepts it, and after a little while, she’s sweet and cooperative again.

Over the three years we lived in Columbia, I got to know several of the ER nurses, between my own visits, and the fact that I was always the designated parent for taking the kids. And nurses shift duties and hospitals. So, one time we have a nurse in triage who’s the room nurse the next time. Or we’re at a different hospital, and a nurse says, “Don’t I know you from somewhere! Oh, yeah! You’re the Marfan dad!” Or a nurse will say, “How’s Gianna’s arm?” “How’s Allie?”

I bring all this up because Joe fell this evening. It was pretty scary. We had gotten home from running errands. I was getting the grocery bags together. Mary and the kids ran in the house because the kids had to go to the bathroom (they sit all day and go hours on end between potty breaks; as soon as we leave the house, though, they need to go every 10 minutes). For some reason, Joe and Clara decided to run outside and play “Scooby Doo” in the dark. From inside the car, I heard them come running out, saw them run towards the front yard, and was just about to yell at them to go back in the house or get over to the car when
I saw and heard Joe take a bad fall.
He was crying. “Are you all right?” “No!” I came running over, and he was already on his feet. He toddled himself into the house and laid down on the futon. While everyone crowded around him, I unloaded the groceries. Then I knelt down beside him, cleaned his wounds, put on band aids, stroked his head, and talked to him gently. At first, all he said was that his arm hurt all over–and it was the arm he broke last year.

It didn’t look broken, and after talking to him about it, I got him to explain that his hand and wrist hurt, and he had fallen on his hand. I put ice on it for a while, and Mary took him to the ER, and she said they were great, and they said it’s probably not even a sprain but just a bruise.

But there was something special in that time. As terrifying as it was, it was also a special bonding moment for me, to kneel there in the den and tend to my little guy, stroking his head and talking to him. English 101 textbooks like to include an essay that E. B. White wrote about taking his son to the cabin that he used to go to with his father, and how the time seemed to blend and invert.

Something like that happens when I’m tending to my kids in their infirmities, especially the most drastic ones. It’s like I channel my mother. As I comfort my own child, I find myself a child again, being comforted by my Mom.

On “Doing Fine,” “Being OK” and “Feeling Better.”

No, I’m not.

Never have.

Never will.

And “never will” doesn’t mean I don’t believe God may give me a miracle. He has given me many miracles, which is why I’m still alive today. However, I consider everything a miracle. I consider my aortic dissection itself a miracle.

Thank You, Father.

Forgive my ingratitude.

But as for “doing fine”? “Being OK”? “Feeling Better”?

Those are abstract concepts that have more to do with the questioner’s peace of mind than the respondant’s situation.

People want you to tell them you’re “fine” so *they* can stop worrying.

Problem is: the problems are here. Some of them have always been here.

I took a gamble. 14.5 years ago, I had a surgery that I didn’t really want to go through with. I had prayed for many years for God to miraculously intervene and prove His power before the doctors could do anything. I worried that, if I went through with the surgery, I might be denying God’s power to heal me. I just wanted to go to Heaven, though I also knew that I wasn’t spiritually ready yet, but I had to keep up appearances.

After the surgery, they told me I’d “be fine.” They told me I could stop living the way I’d always done and start exercising, and enjoying life a bit.

Actually, after the surgery, the surgeon told my parents that, now that the aorta had been grafted once, I could have a dissection at any time. I had already known this from my reading and paying attention at all those NMF conferences my parents took me to, and it was one of the reasons I didn’t want the surgery.

However, I bought the life of “You’re fine.” I got an apartment on campus for my senior year. I began walking for an hour a day. I really was enjoying it.

Then I developed some tearing around the stitches of my valve, and was back to sedentary.

Then those tears scarred over, and I sought out equilibrium. Still doctors, and my parents, encouraged me to walk, to try things, to not use the wheelchair, etc.

I met Mary.

We had kids.

In those early years of our marriage and parenthood, I was the healthiest I’ve ever been. I still had chest pain and stuff, but everything was remarkably stable, and I had more stamina than I had ever had previously or since.

I even made it to full time employment, and Mary got to be a stay at home mom for over a year.

I pushed myself too hard. Icarus flew too close to the sun.

At first, even before that full time job, I started having really bad headaches, with numbness in my face and legs. There are neurological problems associated with Marfan syndrome, so I went up to Hopkins to see a neurologist and a spine expert. They said my problems were not consistent with dural ectasia, and my tests did not show any evidence of it.

As time went on, and the headaches and spells became more acute, I realized they were TIAs–transitory ischemic attacks. I tried to get checked for those, and had a brain CT which showed nothing. I was told “It’s just stress. Get better sleep.” Eventually, I found out that TIAs which recur daily like I had them were more indicative of a brain aneurysm, but I also knew brain aneurysms were hard to detect. My cardiologist agreed and suggested we start medicating as if I had one.

Throughout this process, in 2006, I also developed a new aneurysm in my thoracic aorta.

When an angiogram in 2009 finally found the brain aneurysm, it also found a tortuous and redundant carotid artery and a “venous ectasia” (kind of like an aneurysm, only in a vein and not an artery). The more I researched these, I figured out my TIAs were actually caused when my BP was high, and blood was trying to force itself through the maze of my right carotid artery (like water through a hose with a kink in it).

And, after about 5 years of being relatively healthy, I had declined a bit more quickly than I’d ever anticipated.

Our prayer had always been for me to find full time work, so Mary could stay home with the kids and we could hire some kind of assistant, whether someone to assist with the housekeeping,the kids, our household management, or our medical concerns.

I worked and worked at various part time jobs to try and make ends meet. I overworked myself. I lost jobs either because of my health or working too many jobs at once or both.

We constantly struggled. We accumulated debt. We accumulated debt because I wasn’t strong enough, especially in a townhouse, to take care of the kids and the housekeeping and cooking and work all these jobs. So we ate out far too much. We accumulated debt because, while our income was sufficient to pay the monthly bills (including any eating out), life is more than monthly bills. Cars needed repaired. Medical bills needed paid. Relatives wanted us to visit. Job interviews would present themselves. Car taxes.

Then I would not get enough classes, or I’d lose a job, or whatever, and our income would drop. Each of the last 3 years, I’ve ended up without any classes in January, and the tax return money–intended to get ahead on our debts–ended up going towards living expenses.

But we kept trusting things would work out. I finally had an interview for a potential full time job. They loved me. They told me I’d start in October. We found a fantastic handicapped one story ranch to rent and moved so I’d be ready for the job. The job didn’t materialize. They froze the position.

So here we were, in a new home that solved a lot of our problems in itself, yet we had several others to deal with.

Financial security had been in our grasp, and we lost it. That was OK, we said, because my current jobs were bringing in enough money. Then I didn’t get assigned as many classes because of restructuring. So I applied for two more adjunct jobs and got them, just before Christmas, one of them on campus.

Then my aorta dissected.

So, how am I doing?
1) My aorta is stabilized, but that doesn’t mean I’m fine. It means I have to do everything I can to avoid stress and avoid raising my blood pressure so my aorta doesn’t dissect again. It means I’m going to be on heavy blood pressure medicines and pain killers. Now, instead of 8 diagnosed potential causes of sudden death, I now have 11.

2) I am giving up driving. That is going to considerably cripple my family, but we’ll get rid of our second car, which will reduce our monthly bills by over $500.

3) I am going to appreciate life a bit more and stop putting off important stuff. I’m going to stop hoping for something better and make do. I’m going to trust God to help us with the bills.

4) I’ve always needed help with the kids, but hopefully, if people don’t buy into “I’m OK,” they’ll be willing to give it. This drastic change in the situation has us considering Catholic school–if we can get some kind of charitable scholarship. Otherwise, I’m going to need volunteer help with the kids, at least a few hours a day. In the meantime, the grandparents are helping out.

5) After we find some ways to seriously cut corners, I’m going to try to keep teaching a minimum number of classes, and I’m going to start applying SSDI. In the meantime, I’m going to apply for South Carolina’s Working Disabled Medicaid program, since my dissection qualifies me for both programs.

6) Sometime in the next 3 years, I will need a replacement of my entire aorta. It may be in 6 months; it may be in 3 years; it may be next week.

7) I’m happy and content and at peace with God and my family. Other than my parental concerns about money and my children’s education and care, I have no worries.

Have a Heart: Unsung Heroes, then and now

Bill Feinstein wasn’t famous.  But he was one of those big heroes within the Marfan community.  He was a regular poster on Marfan List, and a valuable resource.  When I first “met” him online several years ago, he had already had several aortic graft surgeries, and had small dissections in the remainder of his natural aorta.  Bill had been through it all, and was in a situation where further heart/aortic surgery could result in almost guaranteed death or paralysis.  Bill passed away on Sept. 14, 2008, during surgery.

My parents and I knew Wendy Weiss back in the 1980s.  Here’s an article written about her in 1986.   She’s still kicking.  I went to an NMF conference with my parents in 1986 or 87 and heard Wendy speak: “I get so sick of having to get up off the operating table and tell the doctors what to do!”

Marshall Weiner passed away many years ago–sorry to say  I can’t remember when.  I met him at the above conference, where he gave me a free hat.  He was in charge of selling merchandise at a table.  They had buttons with a sign saying, “FREE Take one.”  I assumed that applied to everything on the table, so I grabbed a National Marfan Foundation baseball cap and walked off with it.  My parents scolded me, but Marshall laughed and said the sign was confusing and let me keep it.

Have a Heart: Actor Vincent Schiavelli

Vincent Schiavelli was not only one of our most noted “celebrity Marfans,” but in the Marfan community he’s known for his generosity in reaching out to other Marfans, particularly children, and giving them his time and attention.

May he rest in peace.

This should be the Marfan theme song.

When I was a kid, I suggested that the theme song for kids with genetic disorders should be “Three Blind Mice.”

Seriously, though, Rachmaninoff’s “Rhapsody on the a Theme by Paganini” (Same theme on which Andrew Lloyd Webber’s _Variations_ is based) should be the Marfan theme song: a Marfan writing a variation on a work by another Marfan.

Have a Heart: NMF Statement to SSA, updated

Back in the mid-1990s, the Marfan community was excited that Marfan syndrome finally made it into the Social Security Administration’s official list of disabling conditions.

However, the listing was for untreated aortic dissection. In other words, your aorta dissects, and you’re eligible for Supplemental Security Income (SSI) or Social Security disability for the day or so before you die or have it operated on. OK, there are some people who have dissections that they have to live with for indefinite periods of time, for various reasons.

However, the point is that it’s a very limiting criteria. This is a written statement to the SSA, dated, November 28, 2007, by one Dr. Josephine Grima, representing the National Marfan Foundation, asking the SSA to take into account the systematic effects of Marfan.

The following two sentences sum up my life:

Each major “incident” translates into non-productive years, disrupted or discarded careers, lost wages and assets, and an emotional and psychological disconnect and alienation from society. Couple this with the specter of early death and the resulting angst and pervasive depression that ensues further
debilitates the patient.

I most firmly believe that the worth of a person has nothing to do with how much money he or she can make, or with utilitarian contributions to society. When it comes to my personal life and spiritual life, I am quite happy. “You’re rich in the economy of grace,” as a friend recently said to me.

However, when it comes to survival in this cutthroat world, it’s a different story. I’ve worked hard all my life to always come just short, always not having quite as many qualifications as other candidates for scholarships, awards and jobs, always getting high praise for my intelligence and work ethic but never quite able to advance beyond a basic level job when I do have work, and always getting the riot act when my disability invariably gets in the way of my work.

A year ago, I began working on the _Hide Me In Your Wounds_ CD in the hopes of taking my career into my own hands. Self-marketing has proven challenging as a I have to work so many hours as an adjunct college instructor to make ends meet, and I thought I could have success with the “guerilla”/”buzz” marketing approach through my blog and Facebook.

Please download Hide Me In Your Wounds today.  The more copies I can sell through direct marketing, the more money and time I can spend on advertising, publicity and working on getting some of my other works published.

Have a Heart: Paganini Could do amazing things with the violin because he was a Marfan

Have a Heart: Vincent Schiavelli, Part 2

Contributed by Maya Zimmerman (written on 12/26/2010):

Today marks the 4th anniversary of Vincent Schiavelli’s death. For those of you who never had the pleasure of meeting him, he was extremely active in the Marfan community and particularly loved working with the teens. He was also a renowned character actor and appeared in such movies as One Flew Over the Cuckoo’s Nest and Tomorrow Never Dies.

I remember when I first met him. I was 14 and it was my first conference. Friday night all the teens (all 15 of us) were supposed to go to a Salvador Dali exhibit. I didn’t feel well (and was mostly just nervous…I’d never been around so many other Marfs!) and decided not to go. Vincent offered to take me in a taxi so I wouldn’t have to walk. I was really taken aback because I’d never had anyone offer a kindness like that to me before, to be totally willing to accommodate Marfan. But, the nerves won out and I said no thanks. I think not taking that taxi ride may be my one life regret, lol. Anyway, for the teens he was a gift: both serious and irreverent and he pushed us to view ourselves as capable. Whenever I see him in Tomorrow Never Dies I smile and I wish he was still here to see how much the teen program has grown.

~ Maya

Have a Heart: Allie at various ages

<a href=”http://1.bp.blogspot.com/_j4IXOm0vYc8/SgTr3eD5Y3I/AAAAAAAAAOQ/en4d4r1MS_Q/s1600-h/HPIM0966.JPG”><img style=”TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand” id=”BLOGGER_PHOTO_ID_5333647196908249970″ border=”0″ alt=”” src=”http://1.bp.blogspot.com/_j4IXOm0vYc8/SgTr3eD5Y3I/AAAAAAAAAOQ/en4d4r1MS_Q/s320/HPIM0966.JPG” /></a>
2006, Aged 4

<div><div><a href=”http://3.bp.blogspot.com/_j4IXOm0vYc8/SgTr2-l5ZEI/AAAAAAAAAOA/NPQ0jDZRY94/s1600-h/HPIM1316.JPG”><img style=”TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand” id=”BLOGGER_PHOTO_ID_5333647188460921922″ border=”0″ alt=”” src=”http://3.bp.blogspot.com/_j4IXOm0vYc8/SgTr2-l5ZEI/AAAAAAAAAOA/NPQ0jDZRY94/s320/HPIM1316.JPG” /></a> Summer 2006, age 4: touring historic Downtown Fredericksburg, VA.

<div><a href=”http://1.bp.blogspot.com/_j4IXOm0vYc8/SgTr23YDH7I/AAAAAAAAAN4/i2ngyGUGby4/s1600-h/DSCN1748.JPG”><img style=”TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand” id=”BLOGGER_PHOTO_ID_5333647186523791282″ border=”0″ alt=”” src=”http://1.bp.blogspot.com/_j4IXOm0vYc8/SgTr23YDH7I/AAAAAAAAAN4/i2ngyGUGby4/s320/DSCN1748.JPG” /></a> Early 2007, aged 5: looking at the fish in the waiting room of my cardiologist, Dr. Stavrou

<a href=”http://4.bp.blogspot.com/_j4IXOm0vYc8/SgTse_OmjhI/AAAAAAAAAOY/n2pNNqtvCNo/s1600-h/DSCN1819.JPG”><img style=”TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand” id=”BLOGGER_PHOTO_ID_5333647875826421266″ border=”0″ alt=”” src=”http://4.bp.blogspot.com/_j4IXOm0vYc8/SgTse_OmjhI/AAAAAAAAAOY/n2pNNqtvCNo/s320/DSCN1819.JPG” /></a> <div><a href=”http://4.bp.blogspot.com/_j4IXOm0vYc8/SgTr3EdVnbI/AAAAAAAAAOI/_dqUXMaZVJk/s1600-h/DSCN1819.JPG”></a></div>February 2007: “Get Well.” My mom had had surgery, and we made this for a home-made card. The sign she’s holding says “Get well,” and the kids (Gianna, Alexandra, Josef) are standing by the well at the double-wide we were renting.</div></div></div>

Have a Heart: the St. Jude Valve

Donate to St. Jude’s Hospital (just specify that the donation cannot be used for research involving embryonic stem cells or fetal tissue). Founded by Maronite Catholic Danny Thomas, St. Jude developed the artificial valve that keeps me and thousands of other people alive.

Have a Heart: Allie again

More pictures of a girl who, according to the experts, should have been sacrificed to IVF, a Petri Dish and dissection for ESCR purposes to “save her from suffering”:

Age 6, an old fashioned phone booth at the Museum with Gianna and Joe.

Also Age 6, with Gianna and Joe

Age 7, MOVES class recital (dance class for disabled kids at Columbia College–great program!)

Age 7, self-portrait

Age 3 (close to 4) , holding Josef

Pray with Allie on Hide Me In Your Wounds.

Have a Heart: Rabbi Gellman, a Marfan, talks about War on Terror (only YouTube video I could find with him)

Who is Really “Marginalized” in the Church?

The resignation of His Holiness, Pope Benedict XVI, has led the media to engage in one of their favorite passtimes: berating the “controversial” teachings of the Catholic Church, and expressing hope that the Church will “listen to” allegedly “marginalized” Catholics who “have no voice” in the Church by changing controversial “policies” such as teaching the objective truths that male gender is a material requisite for the priesthood, or that abortion, contraception and homosexual behavior are intrinsically evil.

This idiotic article is just one more example of this claim. What struck me about this particular authress’s screed is that she talks of nuns who complain about being “marginalized,” and that really ticked me off.

It is a popular meme of liberal Catholics that Jesus “embraced those who were marginalized.” Like most lies, that’s partially true. However, Jesus also *called* on His followers to *become* marginalized. The fundamental difference between an orthodox and a liberal Christian is our *reaction* to marginalization. The orthodox believer recognizes that we must be marginalized by the world in order to live out the Evangelical Counsels, that marginalization is the path the holiness. The liberal believer sees marginalization as a bad thing, and fights against it.

But whatever they want to say about the “official” teachings of the Church, these people have been running things for quite some time.

I have been “marginalized” by liberal Catholics my entire life.

Every liturgical document from Sacrosanctum Concilium to Liturgiam Authenicam to Redemptionis Sacramentum to Summorum Pontificum has emphasized the importance of Latin as the official liturgical language of the Roman Rite. When B16 called the world synod of bishops shortly after his accession, they voted by a huge majority to promote the use of Latin and to mandate that multilingual congregations offer Mass in Latin as opposed to the vernacular. The documents all say Mass should be primarily in Latin. Where Vatican II gives options, the preference is supposed to be on the more “traditional” option. And as B16 noted in Summorum Pontificum, the Tridentine liturgy was never “suppressed,” so it never should have required an “indult.” Strange that Vatican II options which were *supposed* to require indults–reception in the hand, use of lay ministers of communion–have become commonplace and are considered almost obligatory, yet there has been every effort made to suppress the Traditional Latin Mass. Who is voiceless and marginalized?

I have never heard homilies in favor of Latin or of traditional liturgical practices at “ordinary” Ordinary Form liturgies. I have heard such homilies frequently at extraordinary form masses, or ordinary form Masses in Latin, or Eastern liturgies–situations where the priests were literally “preaching to the choir.” I have never heard an “ordinary” priest give a homily at a vernacular Mass trying to explain why traditional liturgical forms are good. I *have*, however, heard priests preach from the altar that they wished traditionalists would all die off and stop bugging everyone. I have heard priests say from the altar that they “hope this pope will die so we can get a new pope who will get rid of all the rules” (this back in the days of John Paul II). I have heard priests say from the pulpit or other public venues that Latin is to be discouraged because it scares people away and people don’t understand it. I have heard priests preach about how wonderful all the changes “Vatican II made” supposedly are, even though many of the things they’re talking about were never mentioned by Vatican II and actually defy the explicit teachings of the Council.

Speaking of which, I’ve heard and read the claim that the Society of St. Pius X is “heretical” or schismatic because one must accept all the teachings of the Council to be Catholic, even though Pope Paul VI said otherwise and Pope Benedict has frequently critiqued certain aspects of the Council. Yet if that is the case, then why is there no action taken against liberal Catholics who openly defy express teachings of the Council, such as S.C.’s order that the Church provide classes in Latin to all laity?

Then there are the moral issues? Who’s really marginalized when Catholics with “large families” are mocked by their fellow Catholics, openly, and even at or after Mass? When I got engaged, and asked my pastor about NFP classes, he scoffed, and said, “I only know 2 families in the parish who are into that stuff. It’s not that important. You can just use birth control; it’s OK. If you really want to, I can give you the numbers of those couples, because I wouldn’t know anything about it.” At the same meeting, he told me he helped *design* his diocese’s Engaged Encounter Program, yet he claimed to know nothing about NFP! (Thankfully, a lot has changed since then, and many diocese in the SE are using Family Honor, but I’m not sure if it’s part of the official pre-Cana process yet). I was grateful he told me we could do it in any diocese we wanted, since we were a long-distance engagement, so long as we provided the parish with a certificate. So we did our Engaged Encounter with the Diocese of Arlington, where about 1/3 was Theology of the Body and about 1/3 was NFP.

My wife once went to a lecture by the diocesan interfaith coordinator, shortly after the publication of _Dominus Iesus_, in which this priest insisted that then Cardinal Ratzinger was trying to “tie the hands of John Paul’s successor”! What a surprise for him that Cardinal Ratzinger *was* John Paul’s successor.

I have rarely been able to attend any parish meeting, adult class or spirituality group, or whatever, without grinding my teeth in frustration at the heterodoxy and dissent that are openly discussed, sometimes by people who have been educated in heterodoxy for so long that they don’t even know they’re material heretics! They *think* that traditionalists are the heretics who “don’t follow Vatican II,” and yet, if they actually took the time to read Vatican II, and compare the teachings of “both sides,” most Catholics would be shocked to discover that the Society of St. Pius X is far more in line with what Vatican *actually* teaches than what the habitless nuns and cassockless priests have told them for decades about the “spirit of Vatican II.”

This is why, when I read articles such as the one in the _Detroit News_, I get infuriated. And I get infuriated that, when traditional and conservative Catholics *express* their frustration at such articles, people say, “See?! That just proves traditionalists are vindictive and hateful!” During the Mother Angelica-Cardinal Mahony feud, Bishop Thomas Tobin, then of Mother’s hometown Youngstown, OH, wrote a fantastic piece (which I can’t find, so I have to link this article about it) in which he tried to play diplomat, but he observed that perhaps there is some justification in the anger of conservative Catholics who have been routinely shouted down and mocked since the Council.

Liberals run the religious ed programs and schools. They run the liturgy committees. They run most of the seminaries and diocesan vocation programs and–as many ex or would be seminary candidates, along with a few brave vocations directors and bishops have attested to–they specifically reject candidates they deem “too conservative” while promoting candidates who are at least friendly to liberals. Then they beat them down in the seminary with liberal indoctrination. And the religious houses have done the same thing, dwindling their numbers as they come to look like gay and lesbian communes, while the more orthodox communities are thriving. Yet as they get grayer and grayer, the “progressives” continue to insist they speak for “young Catholics.”

Where? Where are these “young Catholics” they claim to speak for? Why aren’t these “young Catholics” flocking to join liberal convents and liberal monasteries? If there are all these women who are supposedly “called the priesthood,” why aren’t they joining the LCWR affiliated convents in droves while they await their “dream pope” who will do all this for them?

And why is there no connection made to the fact that the Cardinal who *most* supported their “progressive” agenda has been completely disgraced as perhaps the worst offender when it came to covering up for sex-abuser priests–so much that other bishops knew he was the easy go-to man for re-assigning sex offenders to his diocese? Why is no one acknowledging that it was precisely Roger Mahony’s “liberal” attitudes towards homosexuality and sex that led him to support these priests?

But, no, liberals have no voice in the Church at all. Bloody hypocrites.

Have a Heart: Jonathan Larson, composer of _Rent_

Died of Marfan syndrome after 2 ERs misdiagnosed his aortic dissection:

RIP