Month: March 2018

The front picture is of Sts. Benedict and Scholastica, brother and sister, founders of the Benedictine order.  At one point, they were visiting and conversing about heaven, when Benedict had to leave to return to his monastery.  The discussion was so deep and holy that Scholastica prayed he wouldn’t have to leave, so they could continue this conversation.  The heavens opened up in a savage storm that would not allow him to leave, and the conversation continued.

This week I had the distinct privilege of spending about an hour and a half with my sister, over coffee.  We went to this place in DC called “Paul”, a chain French café but nicely tucked away.  We were able to get a secluded spot near a door, but isolated from any crowds, which was super nice.

Over coffee, she and I discussed the treatment in Boston, our upcoming trip to Lourdes and what to expect (she and her daughter have taken the same pilgrimage there!) and on life, faith, family, religion, friends, heaven, hell, humanity, medicine, and more.  We talked about so much and it was too short a time to do so, because time flies when you are having fun.

I bring this up because over the course of my life I’ve often felt like I was the junior partner in a conversation.  Politely waiting my turn, or not speaking because I am the younger and should listen to my elders.  At work, this is a problem because I’m not assertive enough and I’m supposed to present my analysis.  At home, well I’m the youngest of 7.  (This is not a complaint.)  Lately, though, I’ve been able to interact with people as equals, as elders, and the conversation and companionship that comes from this is incredible.  (I will have another post on particular conversation another time.)

I debated the title of this blog to be called “On adulthood”, but I think that maturity can  come earlier than adulthood (not for me of course!)  Maturity to me is the ability to sit down without distraction and have a loving conversation, not being afraid to bring up topics that others might find uncomfortable, expressing thoughts and deep concepts.  To me, that time is priceless, and I could spend hours and hours just conversing like this.  Our conversation about heaven, for example, was about the fullness of humanity in heaven.  Not about how we’ll have harps and wings and sing dulcet songs, but about how in heaven we as humans would still want to comprehend, would still want to know why and how.  (And, another post on human comprehension later!)  Reason, that thing which makes us want to understand, is what makes humans different – it’s what separates us from the animals!

Some might say this time is wasted, some might say idle theological and philosophical conversation is useless.  Some might say talking about these topics doesn’t solve the terrible problems in the world today.  Some might say that it’s detrimental to “progress”.

Balderdash, I say.  Those people are wrong.

As an adult, I value this time.  I cannot express to you all the joy that it brought me to spend with my sister, and the realization afterwards that it was because we spoke together as adults, not as a junior family member and senior family member.  We touched on the Benedict/Scholastica bond, I think.  I encourage you to open yourselves up, open conversation that goes beyond weather or sports or politics.  You will be surprised.

(A special thank you to my sister for taking the time to talk to me!  I love you!  And thank you to all my family that allow me to wax poetic on topics that aren’t ordinary.  I love you all! )

Hey reader land, I had a chat with Mel about this and figured I’d update everyone on
what the procedure that I’m going to Wistah is all about, what it entails, why I’m doing it, and a little bit of brutal honesty to boot.  (To boot is one of the funniest phrases I think!)  

Continue reading “Procedure Explanation*” →

Visit one was successful, and after all yall’s support, I wanted to pass along a summary of the visit.  Because why can’t we share!

First off though, a very special thank you to everyone who enabled this trip by watching our kids, Mom and Col and Mrs. Jones.  Thank you all for the moral support and humor throughout the day!  And thank you especially to Melanie, who got up 3 hours earlier than normal, drove the whole day, asked questions, took pictures, was my sounding board, and all around awesome person on this whole trip and every day of my life.  I wouldn’t be able to do any of this without Mel.  

We left home at 0330, NOT snowing here in Manassas/DC, fast drive up to Reagan National, and early enough to get a Dunkin Donut and coffee (again, thank you Mel!)  The flight was very uneventful but beautiful to look out the window.At first I thought we were going to flying over the water but I was deceived, it was clouds!

So, I’ll be honest and say I don’t remember Boston at all.  I “think” I went through when my family went to Maine BACK in the day.  Outside the airport, we took the Ted Williams tunnel out of the city to Worcester (Wistah… Wustah…) and the architecture in Boston is quite lovely!  I mean by that I didn’t see a single garish building (Ok Fenway doesn’t count) on the whole drive.  THAT is impressive.  The next impressive thing is the number of old churches.  Steeples, steeples, steeples, gothic architecture, man…. Even from the outside, BEAUTIFUL.

Umass was really cool, new, and BIG.  Luckily we had good directions, and we got there early enough to have breakfast and also go in 30 mins before our appointment at 1100.

And ok, this is what you wanted to hear about. The visit was awesome.  Dr. Owegi was trained by my neurologist Dr. Maragakis, so she knew our whole team up at Hopkins, which is a huge reassurance.  It’s just nice to be able to have doctors that are on the same page on things!  The clinical research assistants were also awesome, they had been in contact with me since January and helping me get set up on the whole trip.  (They really were awesome!)*

The fun parts began after I signed on the dotted line.  The physical exam, always fun to see how my body is doing.  I swear at this point I’m like a drunken sailor.  Then, the breathing test.  THE BREATHING TEST!

I got an 84 on the breathing test even though twice I nearly broke down laughing.  Because LOOK AT IT!  IT’S RIDICULOUS!  The good news though, and I’ll be BRUTALLY honest here – breathing means survival.  If I’m operating at 84, then I’m doing FAIRLY well – I would say that a year in from symptoms, I’m beating the odds so far.  God be praised.

This wasn’t the hardest part of this whole thing.  That’s to come later.  The fun part of this is my brother-in-laws voice in my head saying “push push push push push push push push!!)

Then we had an EKG.  Gotta make sure my heart is functioning normally.  This one also was humorous as the little sticky things wouldn’t stick.  And I had trimmed my chest hair because I KNEW.  Still, didn’t work, it fell off.

But wait, there’s more!  The final thing was to draw blood.  And if you are following the blog you know I don’t like needles.  The docs always stick it on the inside of the elbow where your arm is super sensitive and I imagine the needle poking even deeper into my arm and…. ew.  I hate that.  So… they did it to both arms.  I don’t know what the heck was going on, because my veins were popping but they couldn’t get any blood.  Called in backup, even she had trouble.

I actually think that blood draws on the wrist hurt more, but are easier to grimace through as opposed to the elbow area.  So I’m gonna ask for that in the future.

Now we wait for the results, and if they are good the next appt may be in a month and may only take about 15 minutes, so we “might” be able to do it over the phone!

We were there from 1030 to about 230, then Dr. Owegi also gave us food recommendations at my request, and Mel and I went for a date in Wustah… Wastah… sometime Wystah… at this place called Volturnos.

Beer is a tradition after a Medical appt.

Mel’s so pretty, and I have Bell’s palsy, apparently

Neapolitan pizza, it’s REALLY good.  I think we may go back.

After that the drive back to Boston, and again where Mel showed herself amazing.  Straight shot back up 90 to Boston and I fell asleep and Mel LET me.  Holy cow, driving solo in a different state with her navigator asleep???  And she’s already done most of the hard work- I just had to get stuck with needles.

And back at the airport, which aside from Mel and I getting patted down again, them not understanding what a picc line is, and being 2 hrs early for our flight, was fairly uneventful.  Mel and I were pretty tired, especially Mel’s hard day, and we were able to make it home where the Jones’s were home with the kids.  At 2345.  Have I said how awesome Mel is?  So I got her a thing that she likes (my love language), and to many more!

Again, thank you ALL for all the help watching the kids, offering moral support, praying for us, supporting us on Facebook, offering contacts and help… Thank you all!  I love this community, I love meeting new people and old friends and feeling God’s love through you.  I even love meeting new people in the ALS community that are so nice, and caring, and genuine. I wouldn’t have met them if I didn’t have ALS so it’s a blessing to be able to do so.  That’s right, ALS is a blessing.

If you have any questions, go ahead and ask!

*(So the trial – I’m not sure if I’ve explained it, but Dr. Owegi was really thorough in explaining the whole thing.  The big takeaways are: bone marrow harvest on visit 5 (they will take the marrow from my hip.  They’ll put me under for it, so we might probably overnight that day and enjoy something around Boston.  Then, they’ll grow the cells and when they are ready they will inject them into my spinal fluid on visit…7?  That is a 24hr inpatient procedure.  [This is Spinal Tap!]  The injections will be 3 total, and the whole study is about a year.  In another post I’ll explain the rationale of this whole thing, and the hope and the desire of the outcome.)

This week I had a good convo with an old friend, a coworker who was leaving the job.  Our chat centered around putting ourselves out here on interwubs land, where people can read about you and comment or not, as the case may be.  This is rather frightening, to be honest.  Do you realize how nerve-racking it is to open up thoughts, insecurities, plans, my life, to people out there in the interwubs?  I mean, people do it all the time, to be fair.  but I’m a private kinda guy in public.  I’ll debate with you all day long over a beer, or a meal.  I LOVE a good debate.

But a debate requires two or more people, a topic of interest, and a commitment to listening to the other person and debating on the topic.  (See Washington, D.C. for what NOT to do, also the media, etc.). This blog at times is more of a monologue, where I can expound as if I were a grand professor at a University, and my class listening to my words.  I sit up and pontificate on thoughts by Joe.  Providentially, there may be people out there that can correct my theology, but on other topics it’s just me blathering on.

I think it’s good to be vulnerable, though.  The podcast “Catholic Stuff You Should Know” talks about vulnerability being key to the Christian life, as it allows for correction, allows for formation, allows for love. If we wall ourselves off in our own strength, we don’t grow outside of those walls.

So I’m going to keep doing this, as long as I can.  Y’all are welcome to ask questions, to suggest topics, to call out my thoughts and know that I am interested in a true “Havarim”.    Or just let me keep rambling.

Just know that it’s terrifying!