Home Town Pride

Coal Region. Family. Gram’s house. Nanny and Pop Pop’s house.  My brothers.  My cousins (all 897789790098 of them).  Childhood friends. Franklin St. Shamokin. Chestnut St. Kulpmont.  Wildcats.  American Legion.  Mt Carmel Area Red Tornadoes.  Friday Night Lights.  State Champs.  These are just some of the many things I think of when I think of home.  Northumberland County, Pennsylvania. Living down in the Philadelphia area not many have heard of Mt Carmel, or Kulpmont.  “Hey Steve!  What high school did you go too?”  Marnt Carmel (that was for you Mr O’Brien).  “Oh New Jersey!”  No not Jersey.  By Centraila.  No?  How about Knoebel’s?  Got it?  Cool!

I was born at Shamokin Hospital on February 7th, 1979.  Then came Tony, then Barry (he actually cursed the doctor the day he was born), and the baby Matthew.  I will never forget the day Matt came home.  Me and Tony are playing in the middle room when Barry stomps over and plops down and says “great. Now no one will ever talk to us.” It obviously had a impact on Barry because if you are in a 10 miles radius you will at least hear him.  He is the loudest human being in the whole family by far and that says a lot from our family. But you try having a conversation at a table with all 8 of our parents, aunts and uncles, their significant others maybe, and all of us cousins huddled around the table just hoping we get one the jokes.  But Aunt Donna is cackling like hell so I will just have to ask cousin Bill what it meant.  Holy shit.  Turns out cousin Bill knew everything his whole life.  (I so hope he sees this…LOL). Oh and cackling is laughing heartedly but specific to those from my mom’s Grimmer family awesome enough to be worthy of this rare genetic trait.  It is hard to explain but maybe if you imagined a chicken bocking and laughing at the same time. I think Aunt Donna has the best one but if Uncle Barry is there he is to get my mom cackling as well.  When Gabe’s super power cackle emerged I realized his greatness.  Then when Chase possssesd the power to bring forth the cackle…I am so blessed.  LOL.  But for real, these people helped shape who I am, and also who I am not.

Shamokin was home until 3rd grade for us.  I remember whiffle ball with Dad and the neighbor hood kids.  Tony would bring that giant red Fred Flintston bat and everyone once in a while would take a cut.  Thanks to dad I was always playing sports with older kids.  Baseball or anything to do with a ball we were probably playing it.  In 2nd grade,my friend Tony asked if I wanted to play basketball on his dad’s team.  So I joined the Fan Club in the SYBL. We lived next door to my mom’s sister, Diane, and her family.  So we were always playing but us 4 bros were always pretty tight.  We used to have this He-Man vehicle that shot this red rocket.  And we had hundreds of the green army men and Lincoln logs and Leggos. We would build something or use a play set we had and place the guys around our middle room.  You had 3 shots with the He-Man rocket and you tried to knock them down.  Those damn laying down Army guys were impossible to get.  Since they were already laying down, you had to flip them on their back to get them.  That is where would introduce them ground crawling scoundrels the wrath of the giant orange atomic Nerf ball bomb.  Hopefully Matthew hasn’t chewed a hole in it while mom was in the kitchen cooking and dancing to CCR while me and Tony were at school.

The Nerf basketball games were never more epic until we moved to Chestnut St in. Kulpmont.  I would dunk on Tony so hard.  Barry and Matt too but Tone definitely took the brunt of it.  Then I would knock down a 3 in his eye and yell “Hubie!” (I loved Hubert Davis, UNC guard).  One of our favorite games was over the top.  Matt and Barry being the youngest were always the guinea pigs.  Tony and I would get down on our knees in front of the couch with as many pillows we could find. Then Barry and Matt would take turns seeing if they can score a touchdown jumped “over the top” of us.  Tony and I would try to hit them and flip them onto the couch.  One day we thought it would be a good idea take our game outside in the yard.  When Matt was flipped upside down and landed on his head (just like when the Brown’s safety Felx Wright hit Buffalo Bill’s Don Beebe) it was a strictly indoor game only.  We did play it though during the great blizzard in March of 1993.  After all now Matt had all of the snow to cushion his head when he hit the ground.  That snowstorm was epic and our back yard was perfect for it and was turned into a sort of Winter X games track.  Our yard was long and the top of the yard was a car port.  If you stood in the yard the wall of the car port was about 5 feet high.  Our yard then ran down towards the house and another wall was there with about a 3 foot drop or so to the lower yard.  We decided that a snow track had to be built for sledding down the yard. So we went up to the car port to shovel some snow down so we could build our starting ramp from the base of the wall.  When the borough worker with the snow plow came down the alley, we flagged him down and asked if he would push a giant pile of snow into our yard.  He happily obliged and the starting point of our ramp was built.  Quickly the rest of the track came together and ran down the hill of our yard to the wall that dropped into the lower yard.  So why not build a jump off of that wall.  The test run was not as expected and Matt barely made it to the bottom.  So we piled the 2 youngest bros in the sled and I pulled them down the track to smooth it out.  My cousins Bill, Joanne, and Becky were there as well and Bill had a great idea to pour water down the track to make it faster.  Matt ascended to the top of the ramp and down he went.  He was going so fast he flew off of the bottom of the ramp into the lower yard.  In midair, the sled and Matthew went their separate ways. Without any regard for our youngest sibling well being, we zoomed down the track with the result.  Fun was had for days with our track with our neighborhood friends.

When you grow up in a small town like Kulpmont, the neighborhood was the whole town of Kulpmont, Marion Heights, Shady Acres, and Den Mar Gardens.  I spent most of my time playing sports and with my friend Adam. Actually 2 Adam’s.  One lived down the street from me and one summer we watched the movie Major League everyday.  Baseball was my life through my childhood.  My dad was always wiling to play catch or take me to the field to hit some ballls.  That was even more fun when he started coaching the Kulpmont Wildcats.  I was 9 and on the B team (under 10 squad) but I always hung out with the A team practices after mine and watched the older players that I looked up to.  I remember how cool I thought it was that my dad was coaching and all of the stuff he was teaching them was the same stuff he taught me about the game my whole life. My cousin Bill was the catcher for the A team so naturally I was destined to take his place.  When school let out that year I remember going to the Kulpmont fields and there were the A team Wildcats playing baseball with other kids from the Cougars team (the other Kulpmont team).  Our field there was on a footballl field with 2 baseball diamonds at each end zone.  On the one side was big section of old metal bleachers and directly across the field were the basketball courts.  Home plate was close to the fence enclosing the courts and those metal bleachers was a home run. That is when I heard “yo Anoia!  We need a guy get over here!”  I was so excited and ran over and joined the older guys I looked up to.  There I was in all my glory playing baseball with older kids and some young teenagers.  I knew most of them by name or from my team but now I am one of them. I remember so vividly the sound of that baseball hitting the metal bleachers the first time Packer launched one over my head.  Damn Dave could hit a baseball a mile.  Later as a Freshman on the varsity team, Dave launched one over my head too but this time I was on his team and on 2nd base. Talk about launch angle. So to Jamie, the Higgins and Gratii brothers, Ryan, Pete, Lefty, Corey, Packer, Joel, and others thank you for giving young kid the confidence to do anything.  Cuz the first time I launched a baseball into those bleacher I felt invincible.  Apologies to anyone that I missed. You all gave me the courage then that I need now more  than ever.

I purposely left a name out of the thank you’s above.  The voice that called me to join my new friends belonged to Stosh.  An 11 year old from the Wildcats A team and easily our best player.  Stosh would catch rides with us to our games along with other kids so I got to know Stosh pretty well.  The following baseball season I was the catcher and I had the “pleasure” of catching for this giant 12 year old. He threw hard as hell and a batting glove and pad in my catcher’s mitt did not provide the cushion needed.  But he also had a pitch called “the gerkin”.  If I remember correctly, the slider/sinker of sorts adopted that name from hitting the catcher in his dill pickle trying to catch this thing. One day catching I took a shot in my ankle and somehow Stosh managed to hit the same spot on my ankle multiple times. Finally I told  dad I cannot catch him anymore out of fear of losing a limb.  Now Pete  would be Stosh’s personal catcher as I grimaced in centerfield every time he took one in the dirt.  I would later get to get to play with Stosh again on our undefeated championship 13-15 year old team and later in high school.  Stosh was a big brother to me and I cannot thank you enough.  For a Mets, Lakers, and Redskins fan you are ok.

My teenage years I played basketball everyday that I could with my 2 friends Dave and Mike. Every day we would play all day and at night we would play under the lights at the courts by the Mt Carmel pool. High school was fun and our class of 1997 was always special.  Our football team would win 3 state championships while we were in school.  Football tradition is a huge part of our community in Mt Carmel.  Growing up playing football in my yard I would pretend to be my favorite football players. But instead of an NFL player I would pretend to be Tony Mazzatesta or Bob Schiccatano.  I am sure that if I was a kid when Brett Veach played I would have pretended to be #22 as well.  Brett was easily our best player and would go on to play at the University of Delaware.  From there he would go to work with the Philadelphia Eagles and currently is one the youngest GM’s in any sport with the Kansas City Chiefs.

Aside from football success, our class was always close.  This would become more evident to me and others the day a classmate messaged me on Facebook a couple months ago.  Amanda has always been the sweetest person so it didn’t surprise me when she said that Kenny, Jaime, and her wanted to throw a fundraiser for our family. Soon my Facebook messages would blow up from old friends and new friends as the planning of Rock the Complex began.  On August 11th I really didn’t know what to expect.  When our family arrived that day I was greeted by Amanada.  And then Jaime and I broke down immediately.  Even old teachers waited for me to arrive.  Old coaches too but most importantly my family and classmates.  The week prior to this Kenny and Shawn told me that Brett was planning on doing something for me.  That is when I was sent a YouTube video of Chiefs tight end Travis Kelce wishing my the best and encouraging our hometown to Rock the Complex. Later I would get to text Brett to thank him.  He also sent me some official Chiefs gear and at the event I was presented with a game worn helmet signed by some players including Kelce. August 11th was easily one of the top 10 days in my life.  The money raised for our family is a game changer for us and helped us immensely.  To be honest, seeing everyone there was just as awesome.  I was never hugged more in my life and I loved everyone on of them.  Even the super hard hugs that pushed on my feeding tube.  Seeing Coach Mick was so awesome.  Introducing my son to him meant the world to me as I have shared many life lessons with my son taught to me by coach.  I relived my childhood that day so much it was like I never left.  What you guys did for us that day is something we will never forget.

I hope that my sons learn valuable lessons during our famiily’s battle it’s ALS. I like to think that what they witnessed that day did just that.  Knowing that my hometown is still filled great people is comforting.  If you are from the area and even if you are not, check out what Kenny, Chris, and Tom are doing for the kids. If you can donate anything to  them please do.  I can never thank everyone enough for that day.  Everything was more than I ever expected and I still in disbelief over it all.   Before I go I would like to give a special thanks to Brian Hollenbush.  I forgot my mask to my cough assist machine at home and I would have survived the weekend without it.  I messaged him and from his vacation he was able to find me one.  I dated Brian’s sister, Kim, and this family has always been special to me.  It was pretty fitting that the first old friend I saw that day was their other sister, Kelly, and her mini me at Turkey Hill.  Thanks for love so much!  I love you guys.  I love all of you from home and the love and support was overwhelming and amazing.

Finally I want to have a moment to remember a couple of our classmates from our class of 1997.  You are gone but will never be forgotten.  RIP Joe “Casty”” Costello, Danny “Mutsy” Malakoski, Ricky Harris, and Jay Pellowski.

 

Drug Dealers

I have seen street drug deals.  Back in the day, I have been to Maple Ave in Coatesville to grab a dime bag from my dude.  Seen heroin addicts push away their families to get the next high.  Almost lost a brother to it.  I have seen him inches from death.  I know alcoholics and pill addicts.  Don’t we all?  It’s sad to see a loved one suffer through an addiction. But this isn’t about them, this is about the families that watch loved ones suffer because they can’t afford the meds they need.  This is about those billionaire big pharma pigs.  And I don’t mean the actual people who make the drugs or the sales people who sell them.  Most of them care about helping people.  It is about the greedy folks at the top who don’t give a fuck about you or your sickness, condition, addiction, affliction, or anything.

Relatively speaking, the street drugs are “affordable” at least. Which pusher man is worse though? The hustler pushing heroine, poisoning communities or the billionaire big wig pharma guy?  The street dealers are selling to people who are trying to escape life for a while. Heroin addicts are chasing the hope for a high as great as the first time.  Those of us with diseases just want to be cured or at the very least relieved for a moment.  Unfortunately, many people in our country cannot afford the drugs they need.  For ALS patients we only have 2 drugs (Riluzole and Radicava), and they both only claim to “slow the progression somewhat”.  We have plenty of other drugs that temporarily provide relief.

In 1995, the FDA approved the drug Riluzole (market as Rilutek and Teglutik) to slow the progression of ALS.  The drug produced by French pharmaceutical giant Rhone Poulenc Rorer, now known as the pharmaceutical giant Sanofi. The drug was said to slow the respiratory regression and delay the patients need for a ventilator or tracheostomy.  It provided, on average, 2 to 3 months of added life. In about 9% it added up to a year. I have to say that typing “added life” gave me a chill down my spine.  Anyway, when Riluzole hit the market it was sold at $10 per pill. With my insurance I pay about $10 bucks for a month’s worth. Without insurance you too can enjoy 3 months of “added life” for a mere $7,300 a year.  Side effects include dizziness muscle stiffness, weakness, numbness, nausea, diarrhea, stomach pain, constipation, headaches, and/or a runny nose.  I have been taking it since February of 2018 twice a day and have not had any side effects.  I can’t wait to see how much “added life” it provides me.  For the next 22 years it would  stand alone as the sole medicine for PALS (patients w/ ALS).

Mitsubishi Tanabe’s drug, Radicava, would hit the market after FDA approval in 2017, over 2 decades since Riluzole debuted.  In fact the FDA was so impressed by the drug that they invited Mitsubishi to file their data ahead of time for US approval review based on the results shown in Japan alone.  This is really rare for the FDA who normally requests clinical trials before being considered for approval in the US. The drug is administered intravenously in doses of 60mg.  The 60 minute infusion is done daily for 14 consecutive days followed by 14 days of no infusions.  Subsequent infusions would happen over the next 10 days and another drug-free 14 day period.  Side effects include bruising, gait disturbance, headaches, rashes, eczema, glucose in urine, fungal skin infections, and respiratory failure. Wait, respiratory failure!?!  I will address that in a few moments. The rigorous infusion schedule, much like Riluzole, would yield a couple months to a year of “added life”.  Typically you would have the first one  or 2 done in the hospital followed by a visiting nurse for a couple and to show you how to do it on your own.  You can enjoy months to a year of “added life” for the pre-discounted price of $1,000 per infusion, around  $146,000 annually.  Now if I take both Riluzole and Radicava is that 4 or 8 months to 2 years of “added life”?  So for $153,300 dollar I can add a possible 2 years onto my life.  That would cost $420 per day during the 2 possibly worse years of your life.  Ironic that it breaks down to $420, because there is another “drug” out there that most do at 4:20 or on 4/20.

I have recently recieved my medical marijuana card allowing me to legally purchase it in the form of a tincture.  A tincture is made when a drug is dissolved into alcohol.  In this case it is marijuana dissolved into a solution and just a couple drops into my feeding tube provides hours of relief.  There is a number of different benefits for many different ailments.  For me it helps with so many different things.  Until I was diagnosed I have never experienced anxiety.  I have been extremely lucky in that regard, as I know plenty who do deal with it on a daily basis.  Well now I am right there with you…sort of.  I have never had a panic attack but nonetheless I deal with it daily.  Controlling my saliva is a huge issue for me.  So yes, cotton mouth is a very welcomed and oddly familiar feeling.  It is listed as a side effect but for me it is relief.  Stretching is important to ALS patients as it provides much needed relief aching muscles.  I can’t explain it but it makes me more flexible than normal.  After a coulple days I noticed that my cough assst was pulling a lot of mucus out of my chest.  This is impossible to do on my own but since using the tincture the amount of fluids cleared from my lungs has been unbelievable.   Who knew it was a natural decongestant?  And yes it does get me high.  For hours actually.  So what!!!  Let us be reminded by NAS and AZ who taught us that “life’s a bitch, and then you die.  That’s why we get high. Cuz you never know when you’re gonna go.”  Along with the tincture, CBD oil provides the same relief but does not include THC (the one I use anyway) and no high is experienced.  One vial of tincture lasts me about a week and half at a cost around $50 per vial.  So around $1,300 a year.  Who knows how much “added life” it provides but I did see an article where a woman diagnosed in the 90’s out lived her doctor.  The same doctor who told her then that if she didn’t take Riluzole she may not live long.  Maybe we should have had my Nanny smoking the good stuff when she was diagnosed.   If you are wondering if cannabis or CBD is right for you or have questions, please let me know.  I know a great doctor and a great friend who can provide you with CBD oil.

I could go on for another 1500 words or so on why marijuana in any form or for any reason has benefits. The revenue alone is worth it. After all, the federal government already allows the dealing of thousands of drugs already and I learned today how many of them only may work. I didn’t plan on this blog post at all until today when I found out my insurance company rejected my approval for Radicava.  We are fighting this decision and so many folks have reached out providing possible solutions.  But as I started to do research for this post I started think why even fight for it?  I vowed to not give up and always fight this disease.  And I will.  And if insurance ends up covering it after our appeal then I will take it.  But I will not spend my, or anyone’s, money on Radicava to possibly add life and may cause respiratory failure.  I would rather spend my time raising money for the ALS Hope Foundation.  They are doing amazing things down there and and they really love and care for their patient and families. We are holding a Cornhole Tournament to benefit the foundation on September 22nd at Stickman Brewing in Royersford, PA.

Wouldn’t it be cool if we could find a box with a question mark floating above our heads? We could hit that jawn and a mushroom popped out giving you real “added life”? But the FDA would regulate it and only some states would make it legal.  But why would they do that if it can help a person who needs it?  That would be silly.  I keep hoping that William Stryker would just show up and give me an adamantium skeleton.  I would sure appreciate it more than Logan did.  But how as a country do we make citizens pay money out of your paychecks for medical insurance.  Only to have your insurance may or may not  reject your claim for a drug that costs more than some houses. It may or maybe not give you months to a year of “added life” from the inevitable result of this terrible disease. I just don’t know if it is all worth it.

Finally, the love from my village was overwhelming today. You guys do so much for me and my family.  And today was pretty evident that we are very loved.  The texts, emails, GIFs (I love a good GIF), Facebook messages and comments made my heart full when I needed it most.  So let’s bring it in real quick and remember what can be achieved when love is at the center of it.  When Carson Wentz went down, defensive captain and team leader Malcolm Jenkins said in the on-field post game huddle “WE ALL WE GOT! WE ALL WE NEED!” Weeks later, after my diagnosis, a team missing their QB, Hall of Fame left tackle, starting middle linebacker, a guard who had his best season ever battling anxiety, a young wide receiver who overcame a rough previous year, a vet backup QB who months prior was debating quitting football, and a center who thinks breakfast is pretty fucking important brought Philly our first Lombardi trophy.  So like my favorite team, I going to love my family and vlllagers while I adjust to whatever hurdle this disease throws at me.  My wife says just about everyday “We will adjust to whatever the new ‘normal’ is each day.’” She is our team’s captain for sure.  We wouldn’t win anything without her.  Drug dealers are a problem in this country, but not the ones you think I mean. Plus check out our link for a fundraising event we are throwing. #ALSsucks https://www.facebook.com/events/1723247131094373/?ti=icl Click To Tweet

 

 

Posted in ALS

The Music Never Stops!

I read the other day that there is over 6,500 different languages in the world.  Music is the universal language of expression of emotions to a harmony.  As there are many different languages there is many different types of music. The beautiful thing about it to me (other than the actual harmony) is that an individual can interpret it’s meaning of words.  It may not be what the songwriter intended for it’s meaning, But if it makes sense to you and it inspires you or moves to an emotion than it did its job.  Music as a language means more to me now than ever that I cannot speak.

When I met Jill, I learned that she wrote her own literature.  I never met an a person that was able to put thoughts in one’s head to paper before I met her. We were both 19 and trying to find who we were while dealing with our own life challenges.  When we started becoming more than friends we would meet between our dorm buildings and just talk.  Many times we sat or laid in bed listening to music.  One of the artists that would bless our ears was James Taylor. At that time I was a hip hop head and my musical library was comprised of classic gems from legends like Biggie, 2Pac, Jay-Z, and of course Ol’ Dirty Bastard. I recall making a smartass comment to her to the effect of “I ain’t listening to James Taylor”. Jill of course most likely responded with an equally snarky quip to the effect of “shut the hell up and listen to one of the best songwriters ever.”

Music can make you happy, sad, angry, excited, or even take you back to a memory.  Just a couple sentences ago I was “gone to Kutztown in my mind.”  Didn’t you see the sunshine?  You could almost taste the moonshine. Alright maybe not and it was like Keystone Light anyway. But you know you sang in your head a little bit there. It’s ok we all did.

Since losing my ability to speak, I have noticed more detail in so many different things. Mostly as it pertains to sight and sound.  Unfortunately my sense of smell has heightened as well, but I am not happy about that one. I mean would you if you can’t eat and smell food?  Bad smells are pretty obvious so I won’t go there. A good beat and harmony can make a song fun but if you add some great lyrics to it you have a masterpiece. Maybe you are the only one that thinks it is a masterpiece and that is just fine. Maybe a lyric in a song can be special to you on its own and have a totally different meaning than the overall song.  I was having a rough day about a couple months ago and it was when I was still able to eat real food but it was becoming harder everyday.  I was listening to a random playlist on Apple Music and the Cold War Kids song came on “Can we hang on?”  The song on it’s own is clearly about a relationship perhaps coming to an end and them seeing if they can hang on the love they had. For me this song has so many lyrics that hit home. Of course “can we hang on?” Is one but also “I think about the old days…Looking back to the start of who we were when we met…”  There is another point in the song when he talks about if they broke it off.  He says “…I’d be lost. I’d be chasing some broke down dream.  I’d be bored to death.  But we cannot stay young forever and out of our heads.”  I mean holy shit that hit home. Many of you may not know this but Jill and I had a moment in our relationship where this whole song could have applied to us and I did feel lost. I say it all the time I would be lost with out her now and It isn’t just some words I say to be cute or gain favor on social media posts.  I text her all the time to tell her that and of course she replies with “you would be fine.”  And “stay out of our heads”, I wish like hell I can stay out of my own head.  But I try to and I will “Hang On” as long as I can.

I mentioned earlier about a patch in our lives where our future together was uncertain. We had friends of ours over that night and we were not getting along that well that day I remember. We were playing a board game and Tom Petty was playing.  “Time To Move On” came on and I was kind of feeling that way at the time. Right then I got up and pretty much said it is time to move on and our night ended. Jill left to her moms and for days i would fall into a hole that seemed to have no bottom. I was sitting alone one night and feeling all kinds of emotions. The song “The Scientist”  by Coldplay came on.  I was missing my family badly that day but my pride wouldn’t let me show it.  Just listen to the lyrics. I heard the song before but when I really listened to the words I was crying after the first minute.  Obviously we got back together and are the lovely couple you know today.  But maybe it wouldn’t have happened without some musical inspiration to make me do some soul searching.  That and some great friends who didn’t let us give up on each other.  Thank you Bruce, Jackie, Wayne, and Casey. We love you guys!

Before I worked to amazing company I do today, I was in the process of re-inventing myself professionally and little did I know emotionally too  I was a restaurant manager for as long as we were together and I was beginning to really hate the hours  I was missing my family and my sons growing up.  I quit management and became a server while I went on countless interviews.  I heard from management of these companies say to me “why would you want to leave management?”  And “working in a restaurant would be so cool!”  It was fun and loved the work and the great people I met but if I missed one more event of my kids I was going to go Michael Douglas in “Falling Down”  I finally got a job with a bank that shall remain nameless.  Some great people worked there but the company was as cut throat as I have ever seen.   So I was gone.  I interviewed all over and nothing.  I thought my interviews with Citadel went so well and I haven’t heard anything.  I was getting ready to leave to take Chase to school and I texted Jill something like “If I don’t hear from them soon I am gonna lose my mind!!”  She of course told me to relax and have faith that it will all work out.  I dropped off Chase and I pulled up to the red light leaving the school.  I put my head on the steering wheel and pleading to God to bring some news soon either way.  Like Tom Petty said “the waiting is the hardest part”  I picked my head up, the light turned green, I turned left and one of my favorite songs came on.   “Keeping the Faith” by Billy Joel.  I laughed and then cried for a couple minutes.  I turned into our development and Citadel called with a job offer.   Coincidence?  Maybe.  But maybe God heard me and thought for that moment I needed to hear Him.  No matter what you believe to be true, I think we can all agree that it was the perfect song for that moment.

Live music can be such a great experience.  I said earlier how it is a universal language.  A concert can bring so many different people together all for the common love of music.  So many different races, genders, ages, religious beliefs, political beliefs, and they all share the common love of an musician or band.  An escape from the harsh realities of the world.  The great part is down the road you may hear one of the songs you heard at a show.  And for a couple minutes you are teleported to another time in your life.  Jill loves few things in life more than life music (like enjoying brunch al fresco with a mimosa).  So for Christmas I bought her Judah and the Lion tickets at the Fillmore in Philly.  The concert was in March and in February I was not feeling like doing much of anything.  Embarrassed by my drooling and inability to speak, I said to Jill that I didn’t want to go and she should take a friend. She didn’t like that idea at all and more or less say i was going and that was final or we would sell the tickets.  I really wanted her to go because she deserves a night out after all we had been dealing with.  So we went and it was absolutely a turning point for me. Not only was it the first night we went out since my diagnosis but it was a moment we shared together.  For that couple hours our lives were not about ALS or sadness.  Instead we smiled and made each other laugh.  Judah came out with a Carson Wentz jersey on and started the set with an E-A-G-L-E-S EAGLES chant.  At the end of the show Judah left us with some words of encouragement and hope.  To paraphrase he said, “Every person has there own challenges in life. Whether it is a disease you have, or you lost your job, maybe you deal with depression or anxiety, or you have a substance abuse problem.  But whatever you have you are not alone and many others feel just like you do.  You are loved and we all need to love each other more.  And always believe in hope.” There is that word again.  What a great night and it was my first step in becoming more social again.  I started to see a version of me that I once knew come to life again.

A couple weeks later I was in the car with Chase and on Radio 104.5 they read an ad for their annual birthday show.  They started a tradition a couple years ago where you can submit a video on why you  should get married and the winning couple gets to be married on stage, have a private reception for 40 people backstage, be serenaded by Judah and the Lion for your first dance, get a $500 gift card to Bernie Robbins jewelers, and a honeymoon package at the Icona beach resorts.  Chase looked at me and said “too bad you and mom are already married. She would love that and you just saw Judah and the Lion.” Remember I can’t talk but I bursted with enthusiasm and excitement but struggled to get through to Chase why while I was driving.  When we pulled into the driveway I typed to him, “you are right it would be awesome but why don’t we make a video anyway and maybe they will let us renew our vows!?!”  So we did it and thanks to all of you we did just that.  The whole day was amazing.  I don’ t know if Jill feels the same way, but when Judah and the Lion sang “Our Love”  accoustically I really felt like it was just me and her in that moment. Just like at our wedding we talked the whole time during our dance.  Well she talked this time and I tried to non-verbally communicate to her.  Even if I could have talked I don’t think I would have had any words that moment anyway.

In 2 weeks, Jill and I will be going away for our “honeymoon” and we get to do it on our anniversary weekend.  How cool is that!!!  Just me and my wife or like Biggie said “Me and my Bitch”  Little known fact we wanting to walk out to that at our wedding but there is a line in there that was not appropriate for the moments.  I told you before how maybe a song’s lyrics could have a meaning to you differently than it does in the context of the song.  Well lyrics can also have a different meaning than whole song.  Just google the lyrics if you don’t know.  It is only a couple lines into the song.  Jill did pick our wedding song and when she first played it for me she said that it is how I have always made her feel.  I was blown away when I heard the words by Chantal Kreviazuk’s “Feels Like Home”.   I knew that she loved me but I had no idea that I made her that happy.

I would love to hear what songs have a special meaning to you.  Feel free to comment and share your special melody.  I will leave you with words of my favorite band the Grateful Dead.  It goes like this…”driving that train…”  I am kidding.  It is from Ripple.

“If my words did glow with the gold of sunshine,                                And my tunes were played on the harp unstrung,                                   Would you hear my voice come through the music?                             Would you hold it near as it were your own?”

 

 

My Village

Since being diagnosed it has been a roller coaster of emotions as you can imagine. I have always been an outgoing, people loving person. You could have put me in a room with strangers and I would be able to easily find conversation with just about anyone.  Other than not being able to eat or swallow, losing my speech is easily the worst part of all of this.  Bulbar ALS is what they call it when it starts in your mouth or throat area.  So many say I am handling it so well and maybe I am.  But my family knows how frustrating this has been and honestly how much I struggle still with the frustration of not being able to communicate as a person should.  Sitting there with your family and watching TV and not being able to quickly chime in is frustrating.  Early on I can slow down my speech and really focus on annunciating my words, but now it doesn’t matter at all.  In your head you make total sense to yourself and many times I would get pissed when they couldn’t understand me.  I tried using hand signals like charades but damn my wife and kids suck at charades.  Or maybe I suck at giving the clues.  Either way we shouldn’t play charades ever.

This is where my village comes into play.  I think it was around January of this year (I could still manage some words) and I was at work.  I work for a credit union and as you can imagine speaking is kind of important.  I was opening an account for a woman and half way through she said to me “How long have you been deaf?  Because you speak really well?”  At this time I have not been officially diagnosed but ALS always the elephant in the room.  So I told her what I was doing and she grabbed my hand and said to me “Wow.  I am so sorry. That disease is terrible and i will pray that you don’t have it.  But if you do remember always that it takes a village to not let something like this bring you down.”  I thanked her and went on with my day.  I always knew we had and still have an amazing network of close friends and family.  But I really had no idea just how amazing it all was until now.

So now I am pretty much without the ability to speak at all.  The ALS for Hope clinic where we go for treatment has an amazing team there. When we first met Dr Terry and her team it was overwhelming.  We would meet pretty much the whole team that day.  It is a one stop shopping for ALS patients. They are all amazing but I think Dr Terry picked up on my frustration with not being able to communicate.  She mentioned how a speech therapist, Donna, would be in soon to help me. I thought how the hell can a speech therapist help me?  This disease can’t be fixed by therapy.  But when Donna came in that day my perspective changed totally.  She showed me text to speech apps and shared stories on how people communicate with them.  The next few days I would be researching and finding the best apps knowing that soon I would not be able to speak at all.  We left there that day overwhelmed with emotion and information.   But one thing was certain the team at the clinic genuinely loves the families they help and when they said they are always available you could tell they meant it.

Many of you know I am pretty stubborn and a proud guy.  I knew about all of the apps but didn’t really use them yet since I was still hanging on to little bit of voice I did have still.  I was worried about so many things but most of all I was worried I was going to lose my job.  From my colleagues at the branch to the members, I knew I was loved and they really are more like a family to me than they were colleagues. The head of HR and my managers met with me and I feared the worst.  I texted Jill and I was so scared.  Dealing with ALS and losing my job would devastate me personally. And I am a man.  How would I provide for my family?  My mind raced all day until we met.  It pretty much went like this.  “Steve we really think you are great but your inability to speak means you cannot do your job effectively.  We have a position that you can apply for in the Web Department at Corporate and we think you would do well there.”  I put up a fight. It was futile but I plead my case.  I showed them the text to speech app, videos of lawyers and doctors who perform their jobs with the same technology.  But it wasn’t meant to be.  I accepted the offer and was off to a new role.  I had so many concerns.  My team at the branch has been so amazing to me and understanding.  The patience and compassion they showed me really is what kept me so positive early on.  How could I be so comfortable around the new team when this team is so awesome?  I was so nervous about it all.  I could write a whole post on my Citadel family and maybe I will someday.  But to Jeanna, Scott, Susan K, Susan J, MIke, Lilian, Tim, Faye, Tom, Lilian, Samantha, Mikalia, Nuffy, Lexi, Rich, Heather, Brett, Ziggy, Pam, Jeff, Jaime, Ian, Steve, Kevin, Sandra, Brian, Stacey, Stuart, Allie, Cynthia, LIndsay, Charles, Naomi, Fallon, Edita, Josh, Colleen, Kevin, Allyssa, Veronica, and many more THANK YOU AND I LOVE YOU ALL!!!

I would text Jill alll the time about my concerns.  She would always say the same thing.  “One day at a time and we will adjust to the new normal.  And when something else changes we will adjust to that to.”  So I said ok.  In order fo me to adjust I am going to need an iPad to communicate effectively.  I decided to take advantage of the new role as a way for me to audition the new me. They didn’t know me and only knew that I couldn’t speak.  So day one I decided to mostly use the app to communicate.  The new team was as amazing as the old team.  This was only the beginning. My confidence was growing and so was my village.

Before all of this I refused to go out in a public setting. I would go to the store but not out with friends. I said no so many times.  Sure my work people get I need to use an app to talk but how could I be in a group setting and fit in?  I said to Jill that I wish people would just understand that I am embarrassed of all of this.  I drool on myself, I cannot eat or drink without making a mess, and you want me to hang with a group and use my app to talk!?!  No way.  She is always to blunt and direct with everything and she basically said ‘people love you and sooner or later you need to get over it”.  I reacted with the typical “easy for you to say” but she was right.  But this is my battle and I had to decide on my own when to man up.

For weeks 2 friends of mine texted me to get me to go out to watch a Philadelphia 76ers game at a bar.  I assured them I want to but I am not ready yet.   They kept on me and finally I said let’s do it.  We went out and our squad lost but it was a win for me for sure.  So thank you Paul and Ted for not letting me continue to live like a hermit outside of work.  This was the start of me finding myself again. Now I have known them for a while so it was easier to go hang with them.  Plus a game was on so how much talking would we even do.  We are men after all and the game was on.  Now there is another group of friends that my wife and I became friends with.  Parents of our youngest son would always be inviting us to hang out.  Time and time again I would say no and tell Jill to go and have fun.  I hung out with this gang before and they are my kind of people but I didn’t know them that well.   But they kept inviting and I kept declining.  Finally one of the dads texted me and said you know you need to get your ass out here and have a beer with me.  We exchanged some funny texts but he was right.  A lot of people have done a lot for us but honestly no “villagers” do what they have been doing for us.  Whether it was picking up a kid for us, being there for Jill, offering words of support to me, or whatever this crew would continue to go above and beyond.  I was amazed.  I know these guys but I don’t really know them at all.  So maybe it was guilt or just me saying fuck it why not, but I did it.  We went out as a couple to hang with friends.  I charged up the iPad and Bluetooth speaker and we went out.  It was so much fun and I felt like my old self for the first time in a long time.  So to my friend Corey, thanks for always pushing me to get over myself.  And to Amanda, Michele, Mike and Lori, Matt and Shannon, Scott and Becky thank you for the love and being such amazing people.  And a very special thank you to the “other mother” Gail.  You are a super special person and I am very proud to call you a friend but you are more like family.

There are so many of you to thank and I just can’t possibly name you all.  But one group in particular has been so near and dear to our family.  The Matt Gotham Group has meant so much to us.  Much like Citadel, you guys are more than just an employer.  Matt and Amanda I can’t say enough about you guys.  I love you so much and am proud to call you family.  Trevor and Heidi you guys are so special to Jill and I.  Steve and Janet, Brian and Sarah, and Kerry and Amanda thank you!!  There are others at KW that are just too many to name but you all mean the world to us.

To my hometown folks and classmates of Mt Carmel class of 1997 thank you. I left the area a long time ago but the support you show me is unreal.  I am proud of where I am from and proud to call you all friends.  My restaurant families from UNOs, Bob Evans, Bellewood, and Molly’s i love you.  My extended family that we don’t see as much as we should I love you guys.  Bruce and Jackie, Matt and Katie, Jim and Amy, Felo and Cheryl, Richie, Mayo, Reggie, and my homie Pat I love you guys like crazy.  There is a little superhero out there named Kieran that I have to thank.  This little man picked me up off of the ground one day when I was down and out feeling sorry for myself.  This little tough guy beat cancer twice and isn’t even in middle school yet.  You are the strongest person I know and you inspire me to not stop fighting,  It makes sense since your parents Kevin and Rebecca are so tough too.  I love you guys.

Finally to the most important part of my village my family.  Without my wife Jillian I would be lost.  You are my rock and without you I would have given up.  Gabe and Chase you are amazing young men.  A child should not have to help their dad as much as you do but I appreciate all of the help you provide. I am so sorry that this is effecting you guys. The 3 of you do not deserve any of this at all.  My mom and dad I love you.  Just being there for me means a lot.  The sacrifices you have made for us in not forgotten. My mother-in-law Bambi you are too good to me.  What you do on a daily basis is unreal.  My father-in-law Bob you been great as well.  Both of our dads have found a respective Barb to share their life with and both are great to us and our kids.  Megan and Rob I love you like my siblings.  To the rest of Jill’s family thank you.   To all of my aunts, uncles, and cousins you know how special you all are to me.  Growing up with you was so fun and shaped me into the man and father I am today.  This part is tough to write…my 3 brothers.  Tony I am lost without you man.  You are always there to call me on my bullshit and be there for me when I need to bitch about something.  I love you like crazy bro.  Today is Barry’s birthday and honestly a couple years ago I didn’t know you would make it to see this day.  I am so proud of all you have overcome and continue to overcome.  You have come so far and I cannot wait to see you get back on top.  You inspire me to keep fighting. Matthew…um….what to say.  Of the 4 of us you are the best one.  You left everything you had to join the Army and move overseas.  The bravery and guts that takes is unreal.  People say I am strong for fighting this disease but I didn’t choose this.  You chose to take on that  challenge. I cannot wait to see you in December and I may not let you leave.  Except I mean it this time.  You each have said to me how much you look up to me but as your big brother to see the young men you all have become gives me peach of mind.  Eventually this disease will take my life and I find comfort knowing that my boys will stil have you guys.  This post was long and thank you for reading.  I could write all day about how much “my village” means to me.  I love you all and see you all soon!

Posted in ALS

How did I get here?

To quote John Cougar Mellencamp, “I was born in a small town.”  I was born in 1979 in the coal region in a small city called Shamokin, PA.  I am the oldest of 4 boys who were raised or tolerated (depends on the brother) my 2 great parents.  My family would then move to Kulpmont, PA where my brothers and I would attend Mt Carmel High School.  Growing up in a small town gave me the foundation of many values that shaped me into the man I am today.  I would then attend Kutztown where I majored mostly in socializing.  Here is where I would meet my best friends and the eventual love of my life, Jill.

Soon enough we would be the parents of 2 amazing sons and move into the wonderful community of Royersford, PA.  I spent most of my life working as a restaurant manager.  Over the better part of 15 years, I have worked in a handful of different positions at multiple establishments.  From my staff to our guests, I created a pretty strong network of people.  As much as I loved the business, it was tearing me apart not being there seeing my sons grow up.  I started to hate the job and the hours so much that I had to make a change.  I finally got a break and made a transition into the banking world.  Finally, the work/home balance I have been waiting for so long.  A career that allowed me to help members of my community and no more would I miss a  game, a play, or a family function because of my work hours.  It was such a relief to finally get to a position in my life that I wanted for so long.  I was the happiest I have ever been.

Then it happened.  My speech started to become slurred around early 2017.  This time it wasn’t because of too much craft beer or dirty martinis.  It began to progressively get worse over time.  It was now the summer of 2017 and I had no answers.  I had an ENT tell me that it was because of an abscess in my throat so he prescribed me with a steroid and antibiotics.  In 5 days my speech was getting better and I was elated.  In the following days it would progressively improve little by little.  One day I woke up and could not move my tongue at all.  It felt like it was cemented to the bottom of my mouth.  I tried to say my wife’s name and some murmured sound came out.  We called the ENT and he said to come in right away.  No access.  He was confused.  He sent me to a neurologist who said that I was fine and the abscess must have caused nerve damage to my tongue.  Frustrated as hell, I went back to my family doctor who said to see a different neurologist and so we did.  He ordered so many blood tests for every neurological disease possible.  The word “hope” began to become a prominent word in my life.  Day by day, test results would come back negative.  Nope it’s not this or that.  Maybe it is this…nope not that either.  That 4 letter word that once gave me a sense of security started to piss me off.  People would say “keep hoping” when I wasn’t so sure I believed in that word anymore.

It was now January 2018, and we continued to eliminate a  possible cause of my symptoms what seemed like every day.  My doctor said let’s do an EMG (Electromyography) to see what is going on with your nerves as they relate to your muscle movement.  So I went home and googled (I do not recommend googling anything medical about yourself unless you want to scare the hell out of you) what the EMG would test for and the list was not a happy list.  Some of them we have already ruled out which only left a handful.  The shortlist had one thing in common…fatal.   Jill and I got into the car that day and we drove to the doctor.  Needles were placed into muscles all over my body as he sent electronic pulses to see how my nerves and muscles responded.  It was cool for a second as it looked a little bit like Luke Skywalker when he got his mechanical hand.  But when he got to my hands and my tongue it quickly became not so enjoyable.  In the end, he said to me “well there is some delay in your muscles reacting to your nerves.  I will be honest with you the few possibilities are a death sentence.”  It was what I feared the most from my googling and there was always that lingering possibility of my biggest fear.  I watched my nanny suffer from ALS which would eventually take her life.  I felt a feeling of anxiety take over my body and it was a feeling I never experienced before.  I cried.  I was unable to catch my breath.  Jill and him talked about what I do not know.  My mind raced and raced going from dark place to an even darker place.

This doctor then set us up with an appointment to meet the staff of the ALS for Hope Foundation at Temple.  February 8th, one day after my 39th birthday, would be the day my life changed forever.    We ordered more blood work to ensure that the previous doctors didn’t miss anything.  Unfortunately, they did not.  I found it ironic that the word “hope” I have grown to hate would be so prominent in my life.   I didn’t sleep well at all for weeks.  My mind would go from anger to sad daily.  It was such a weird feeling and all I thought about (and still do) is how long will I be here and how will Jill and the boys be if I am not here.  So many questions.

While I struggled with losing my voice almost completely and not being able to eat very well, I still had a job and a great family.  As you can imagine, being a banker and not being able to speak clearly is not a good thing.  Somehow I was able to have my best month yet and just kept telling myself “head down and day by day.”  Then I picked my head up and saw an email invite from the head of HR and my manager for a meeting.  Uh oh, it’s happening.  How can I provide for my family without working?  What will I do?  The meeting came and I was blown away when they offered me the chance to continue working in the web banking department.  I had to prove I could do the job and I am happy to say I have adjusted quite well to the new role.  While I miss my in the branch family a lot, my new team and the whole corporate office has embraced me right away.  They haven’t once treated me with pity or someone with a disease.

So now it June and it’s been a year since my initial symptoms and I have been pretty happy considering.  This past week I have been almost unable to eat or drink really anything at all.  I have become dehydrated and undernourished.  Yesterday we spoke with our doctor and I am being scheduled to have a feeding tube installed to ensure I am getting properly fed.  While this is not what I wanted it will benefit me a great deal to maintain a quality of life again.  So I speak now through app on my iPad or iPhone and  I will eat through a tube directly to my stomach.  That’s not so bad. So here we are today waiting at Temple Hospital on June 12 about 12 hours away from my feeding tube being installed.

Just days before this I received word that my genetic test showed a mutated gene.  Ready here it is again.  We are hoping the newest medical advances in gene therapy can lead to some real answers. So I taking life one day at a time.  Trying not to look ahead or behind but staying in the moment.  It is not easy to do at all.  I have played so many “what if I did this or that” and for what?  I cannot change anything but I promised myself to change what I could and not dwell on what I cannot.

I decided to share my story mostly to raise awareness for this terrible disease.  I heard a doctor say recently “we are as close to and as far away as ever to a cure”.  So donate if you can.  It all takes funding.  Look what cancer research has done with massive funding and all of the advancements in ALS research since the Ice Bucket Challenge a couple years ago. So let’s all “hope” for the best and maybe we can save some lives in the future.  Maybe not mine, your child’s, or you own.   Thanks for listening and feel free to share my blog and page.  Check out the website below and see all of the great things the clinic I go to does for others like me.  They truly are amazing people.  I love you all and thanks for being part of my village!!

www.alshf.org

 

Posted in ALS