The low down
I’ve been thinking about writing this post for a while. I want you to know that this is not a gambit to secure some sympathy or to beg for prayers or anything of that sort. It’s just that I have about 7,000 friends who visit this blog everyday and this is the best way to tell you all. You may remember that I spent a week with the wonderful doctors at Walter Reed last summer to figure out why my feet quit paying attention to me. It’s been going on for about three years now. They ran every test on every malady they could think of and they arrived at the same conclusion I’d guessed.
I have amyotrophic lateral sclerosis (ALS) more commonly known as Lou Gehrig’s Disease. It is a neurodegenerative disease of unknown cause that breaks down tissues in the nervous system and affects the nerves responsible for movement. Well, I say I “have” the disease, but there’s no real test to prove that’s what it is – the doctors have to eliminate everything else in order to arrive at that diagnosis.
The good news is that I’m still around – many people die from it in less than two years after the symptoms start appearing. So far, it’s only affected my feet and lower legs. Today, the doctors at the West Virginia ALS clinic tested my ability to breath (how most people die when the respiratory system doesn’t talk to the brain) is higher than they expected. The doctor said she’s going to put the test results on her fridge.
Luckily, my real job doesn’t require more than sitting at a computer, like this one, so as long as my hands work, I’m good. My hands show no signs of not working. I do have a problem doing math in my head and my vocabulary is slowly contracting, but there are computers for that I hear.
A few years back, the VA determined that ALS occurs in an abnormally high number of Gulf War veterans, but they don’t know why. I’m still in touch with many of my troops and they don’t show symptoms and I have no family history of the disease. Regardless, I’ve applied to the VA for disability through the Paralyzed Veterans of America and they seem to think that it’s an automatic 100% disability rating. So I guess I’m going to become an expert on the claims-filing process at the VA.
Like I said, I didn’t write this for any special treatment or to beg you for your prayers. I wrote it just because I think of you dickweeds as my friends (all of you lurkers I don’t know, too) and this blog is one of the few successful things I ever done. So, thank you for sticking by me with all of my trips to the doctors and for the shortfalls in the blogging in recent months.
By the way, mentally, I’m fine with this. There’s no one to blame, not even myself or the Army or Saddam Hussein or anyone else. It’s just stuff that happens.
I have a great family that sticks by me, great doctors who do everything they can, and you, my great friends. To borrow from Lou Gehrig in his good bye to the Yankees fans “I consider myself the luckiest man on the face of the earth”, and I’m not going anywhere until God decides otherwise.
ADDED: By the way, my doctor has a patient who she’s been treating for 15 years. He takes his wheelchair out to his tractor, farms all day and then wheels himself back to the house. So you phony soldiers aren’t going to be getting rid of me anytime soon.
Category: Pointless blather
Jonn,
Via email send me an address where I can send the cigars. Seriously.
You got people sending the drinks. What good is a drink without a cigar?
Do you like mild, medium or strong? Fat and short, or long and thin?
They won’t be Cubans, but decent none-the-less.
Here’s to another two score and ALS be damned. You are in my prayers John.
@25 and 36: 3rd Wolfhounds here 1988-1992
That’s Jonn (damn autocorrect)
This is the only website, much less blog, that I check daily. Jonn, you and your fellow writers keep us abreast of topics that are of import to many vets (and conservatives for that matter–isn’t the latter usually a prereq for the former?), and give me a place to vent and to occasionally make a drunkenly incoherent point. Best of luck and hang in there! I look forward to reading your posts in the years to come.
Hang in there John.
“…There’s no one to blame, not even myself or the Army or Saddam Hussein or anyone else. It’s just stuff that happens…”
Whether physical or mental, there are just some things that we will take to the grave.
Make it a good one.
Held off on replying overnight to lets this sink in. It still hasn’t fully registered. I’ll say more in a private note when it has.
Whether you want it or not, I too will ask CINC-All to assist.
More to follow later, privately.
Stay well Jonn.
Have I told you that I love it when you call us dickweeds? 🙂
So, you need to do this: Display your intestinal fortitude which is required to fight the ALS objective and complete the mission…though it may knock you down- we’ll be here to put you back. Promise.
ABN-CIB…Jonn,
Sorry to hear this young bro. I have no doubt you’ll be around a long long time to give the right people a huge pain in the ass. I’m not even concerned. Your fighting spirit will get you through this. AIRBORNE!
John,
I have been lurking here for years, I value your opinion, insight,and strength of character. Your site is a place to refresh the mind and soul and cut through the bullshit, Thank you.
Prayers go up for you and your family!
I’ve not been lurking for years, more like a year or so, and I thank you for this blog, sir. I’m sorry to have read this, you’re getting prayers, whether you want them or not.
A tough cup to drink from, good luck.
Sorry to hear this, Jonn.
I see you at least once or twice a week and you know how much I love to follow orders! So, TUFF, you are in our prayers and thoughts!
You absolutely know that I am here to help!
Quick question though, does it affect the connection between brain and mouth? That might explain most of my outburst over the crap on the news!
Nec Aspera Terrent Brother
Helluva first read today. My thoughts n prayers are with you Jonn. As others have said above; this is the Mil-Blog that I read daily, and multiple times each day.
In conversation several years ago; Alan Osmond, (The Osmond Family), told me: “I have MS but MS does not have me!” Best thing I have heard about anyone with any disease. It may “get you” one day, but I doubt that it will ever “beat you”. Drive on to the objective, Soldier.
There are a number of folks who have read this post and are unable to comment. I know. I was one of them. I will assume the role of their spokesman until they are able to say what they want.
First off, Jonn, we wish you well and know that if any affliction can be beat or any obstacle over come by spit and vinegar, what’s ailing you has no chance. Second, there is something special about TAH that allows us to feel that its pappy is someone we know, respect, and admire even if most of us haven’t met you face to face. If ever you need proof positive of that, just ask for some help on something. The line will be long with those of us who will respond saying, “I know NOT to volunteer for anything, but this is the exception.” Lastly, we look forward to many more years of your posts. We of this world don’t get to call certain shots, that’s for sure. But the Good Lord knows what we need and, I earnestly believe, no matter what YOU may want, he’ll take care of us who need you here. Oh. One more last thing: Could you please consider selling TAH Dickweed medals and certificates? (Are you listening Frank?)
Jonn,
We all of us owe you in one way or another for TAH. It is, I’m certain as much a catharsis as a labor of love. It’s also nice to be able to sit on your virtual front porch and chew that on the subjects you (and others here) toss out.
Although not having ALS, I understand the mobility issues. I’m dealing with a spinal tumor that forces me to use a cane right now and will likely result with me in a wheelchair. I don’t say that for sympathy, or that it comes even close to what you’re dealing with. I say it to let you know that there’s a lot of us who understand, if only partially, and are willing to support you in any way you might need.
Hell, Jonn, even if it’s to help keep you in rum and cigars. 🙂
God Bless ya, shipmate. We’re all family here. Just holler if/when you need anything.
Thank you for all the sacrifices that you have made to combat evil and for the example that you have set for future generations to follow. Thank you for writing TAH.
I will add my prayers to all the others. The Lord is going to be utterly sick of hearing about you at this rate. :p
Remember that God helps thems what help themselves, so keep fighting both for yourself and for your family.
I’ve been banging away at my keyboard to this blog for about 7 months now, and keep coming back because like-minded folks are here. The discussions are sensible and the humor can’t be beat, which is why I keep coming back.
You are a friend, Jonn. In spite of the fact we’ve never met, camaraderie exists amongst us all, and we owe that to you. With that said, if you need ANYTHING, let us know. I’m in northern Virginia and presumably not too far from you. My e-mail is embedded somewhere, so if you need something – let me (us?) know.
OK … one dickweed to another. Thanks for telling us. You give many of us like minded patriots a place to hang out, blow off steam, bloviate, and otherwise comment on what is important and what is not.
So … Jonn, this dickweed wishes you all the best as you figure this out … keep us posted!
Jonn you are in my thoughts and prayers. The VA process is slow and ponderous, it took about nine months for the VA to return my rating. I was expecting maybe 20%, I am rated more than a little above that now. I am 28, still a drilling reservist, and I can still PT, shoot, move, and communicate better than the 18 year old PT studs. Point is, Jonn, keep on rocking in the free world, I remember that video interview you posted a few months back, and you are still mobile, still young at heart and you still have that fire when it comes to stolen valor. Keep up the fire!!!
USMCE8’s statement goes for me too, I’m in NOVA and I can be in WVA in an hour or less should you need assistance.
Jonn, our thoughts are with you. Hang in there.
F$ck man, I just found this place a few months ago….you better tough this out! I love reading the words here, it’s as though I found a place where my thoughts aren’t so singular anymore…where I am expected to defend my thoughts or get drilled for being a numbnuts….
Well, even if you didn’t write it for thoughts and prayers, you are sure as h3ll going to get them Jonn Lilyea…I know a lot of folks who like to add good men and women into their daily prayers and you are going to be one of the names we add in from this day forward. I’m on your side dude!
You’re a special man, Jonn. Prayers out to you and yours.
hang in there John.
Jonn,
The story still has chapters yet to be written and I expect that you to continue to write those chapters.
Keep driving on to the objective!
I wish you & yours well.
May God bless you.
RLTW
Thoughts and prayers out, Jonn.
Prayers for healing and health. The angels are afraid of infantrymen, so you’ve got lots of time. True story.
Dear John, for what it is worth, I and my family will pray for you. God speed young man!
Jonn, Hang in there, prayers are with you and your family.
BTW: that is Sgt Dickweed to you!!
Jonn- research keeps improving things; a friend who flew in Nam had ALS and they gave him 2-5 – he made 13 more. Don’t believe the mortality BS and hang in there.
New to this site but appreciate all you do. Hang in there brother. Semper Fidelis.
Keep on keepin’ on.
Jonn,
I as a guy who has been coming here (and lurking) nearly daily for almost 5 years, thanks for all you do. Keep up the fight.
Never waste a day. There’s so much to learn!
My very best to you.
Nobody is even the least bit knowledgeable about what causes ALS. I am very familiar as I took care of a great man that eventually died from the disease. He was a great man and the bravery he showed every day touched me like nothing ever has.
You are very Brave my friend to accept it for just what it is. Nobody can tell you what will happen in what timeframe or anything about when and where it will strike next.
Professor Steven Hawking has ALS and is the longest known survivor of the disease and he certainly has had a very full life. He has had it for over 50 years and hasn’t quit living yet. I admire both of you.
Thanks for all that you have done. I go to TAH every single day for the truth about many things, I find your attitude and insight to be spot on at all times.
Thanks
Thunder
Damn.
I have watched this in action. My mother and her sister died of this. They didn’t tell me about my aunt for years for fear that I’d freak over the 5% chance of a genetic connection.
May God grant you strength.
Jonn,
We have known each other longer than any other dickweeds here and I know that when a hard fight is needed there isn’t a better fighter I have ever known.
Beat this! That’s a fucking order!
and you have never failed me.
John I chc your blog every day.So that I can think about 2nd plt B1/75.Keep up the fight.RLTW RGR MAC
Hey, Dickweed Mc Lurker here- John, I hope to be reading your posts years from now, or even better, shake your hand. Hang in there, and please keep us posted!
It’s not about how you’re knocked down.
It’s about how you get up.
I said you were right up there with Hawking, and I meant it. Fight the good fight forever.
Each life is a story, we never get to write the beginning and damned near never get to choose how it ends, the parts in between are what matters. I know from reading your words that your are one of the few men of honor and integrity left in this world. I have no doubt that you will face this for what it is and not let yourself become a victim.
You said that this blog was one of the only successful things you had done, I highly doubt that, In my life I have found that more often than not its the things we consider trivial that really matter to those around us. I have no doubt that in your life you have inspired more people than you realize.
I am not man with religion but i will keep you in my thoughts.
Peace
Jonn: Prayers, thoughts, best wishes and support with you always. You ever need anything, e-mail or shoot me an FB message.
Best wishes and hang in there, you can’t go anywhere, this blog is way to interesting for us regular folks.
prayers to you brother, you WILL beat it!!!!!!!!!!
Fight on, Jonn. best wishes and stay strong!
Sending a good thought your way Bro…..hang tough.
John, you rock. Good thoughts and prayers for the man who didn’t ask for them. Keep putting shit on your doc’s fridge!