My quest for sidewalk domination has begun! Muahahahhahahah!!!
No, seriously, the website where I got the idea starts with an old Quickie F55 wheelchair, then modifies it. I have purchased a quickie F55 wheelchair, from England, and I’m waiting on my good friend and mentor to help me ship it over to my family and friend who volunteered (I really hope not voluntold) to help me. This is exciting for me, EXTREMELY exciting. The F55 currently runs, it works and I “could” use it without mods. But no, if I’m going to buy a wheelchair just to use it’ll be one through insurance. This chair though… she’s special. Yes, it’s a she. Yes, she’ll need a name. Continue reading “Wheelchair- stage 1 complete”→
I got a note from UMass yesterday, after I let them know about my fall (the study wants to know EVERYTHING) that my bloodwork came back normal and eligible for the trial. She says my blood so far has qualified me.
Step one complete!
I must say, I hadn’t heard anything and I wrote asking “do I have cancer, or something?” I would laugh at the irony!
Also, side note. God has blessed me with very good health in this time. I’m as healthy as an Ox (with ALS), so that’s very good!
If you squint, you can see the raised slab and the ghost of a dent in the concrete.
I have so many topics I’d love to write about now, but I have to get this off my chest. Not for sympathy but so you can share in the joy!
First off, I have a footbrace.
It’s made of carbon fiber. It’s pretty sweet, but when I wear it, I find it hard to keep my balance or go up and down stairs or hills or anything. Not great. But on flat surfaces, I actually walk faster with the brace than without. It mitigates the toe drop I have. It’s not super comfortable to wear though all the time. I also have a cane, also carbon fiber. I use this when I am walking longer distances and not wearing my brace, but usually it’s folded up in my backpack unless I need to use it.
Restoration of the Holy Sepulcher. Copyright National Geographic
Christ is truly risen, Alleluia!
Today is Easter Sunday, 2018. (Just in case you forgot what year it was.) As you all know, I’m Catholic, and this is a huge day for us. So, in the intents and purposes of being up front and honest, I want to share my thoughts with you on this week, on this day, and what it means to me. Because this is my blog. Continue reading “Easter thoughts”→
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! )
without. It mitigates the toe drop I have. It’s not super comfortable to wear though all the time. I also have a cane, also carbon fiber. I use this when I am walking longer distances and not wearing my brace, but usually it’s folded up in my backpack unless I need to use it.
Joe's ChronicALS 