Matt With MS

I am uninspiring, fairly lazy, living in denial, and think I'm having the time of my life 90% of the time. Let's change that.

Month: July, 2014

One Month (Golf shots, Despair, Urination, Ripped Shorts and Happiness)

One Month (Golf shots, Despair, Urination, Ripped Shorts and Happiness).

One Month (Golf shots, Despair, Urination, Ripped Shorts and Happiness)

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I started to put together a long and actually researched post in honor of 1 month into this journey a few days ago.  I scrapped it last night and wrote this..

I promise to make this less of a journal in the future, and I promise that this blog is eventually going to be used to inform a lot more, but for the beginning it had to be all about me.  I thought I needed it, and I was 100% correct that I did.

It’s me talking to myself, as much as it is talking to anyone that reads it.  It’s me coming to grip with flaws in my character, with personality traits that I don’t like, or want to change.  It’s me coming to the realization that I’m not just Matt Walker from Lambertville, NJ anymore. 

For the first time that realization actually feels good. I still have many of the characteristics that I have had my whole life.  I still am guided by where and how I grew up.  But, overall, I’ve changed so, so much.  I don’t think the same things are smart that I used to.  I’m inspired by totally different situations and people.  I have totally different opinions.  I believe in totally different things.  This blog is me coming to grips with the notion that I could actually really like myself and be happy in my own skin.  It’s me coming to the realization that I don’t have to feel sorry about who I am.

That it has been one month since I decided to go full force into “understanding MS” is mind blowing for me.  It feels like it was both 3 years ago and 3 days ago.  There are things that are so far in the rear-view I can’t even comprehend why I cared about them.  There are things that feel like they happened yesterday because they are still a valid part of my life.  I apologize for anything that seems like a self-pat on the back from here on…

There are stories.  There are situations that I can look back and realize the importance of.  There are situations that I can laugh at, where I couldn’t imagine smiling at the time.  There are some where I wish I made a different choice, but think I’m finally using to learn something from, as opposed to just feeling bad about.

There was the day where I grabbed an unfiltered Lucky Strike that my roommate had left out on the kitchen table, and walked to the back door of my apartment building with all intents on smoking.  The back door jams from time to time.  Usually you just put your shoulder into it and it opens.  I dropped my shoulder hit the door and in the process squeezed down on the cigarette, cracking the paper.  I threw it away and walked inside.  That was 4 days after quitting. 

There was my epic (In my mind) ordeal at the golf course.  I left work at around 4pm after staring at a blurry computer screen while every dark thought I’ve had came screaming through my head for about 7 hours.  I had to go.  I went home and realized that sitting by myself would only be worse.  So I drove to the golf course to hit some ball at the range.  Finding out that no one was playing, I decided to go out.  I played 18 in about 2.5 hours and finished right before dark.  Only to find that I lost the only set of keys I have.  Well, I drove around looking for them, but alas it was too dark.  Good thing too, because everyone had left the course except the one greens keeper.  I called the locksmith and sucked up the idea of spending 300 bucks on new keys, and told the greens keeper I’d be about 20-30 minutes.  Well, that didn’t fly because the gate automatically closed in 5 minutes, and I had to leave.  So I walked the 1/3 mile lonely walk to the front gate, which thankfully closed behind the greens keeper, meaning I got to show off my climbing prowess.  In process of scaling 3-4 feel of steel fence, like the exact opposite of anything that resembles athlete, my shorts decided to rip down the middle… leaving my boxers, and sometimes more, hanging out no matter what I did.  My uber came and I realized that my roommates aren’t home and I can’t get in my house.   At this point I just started laughing uncontrollably.  I was almost broken.  I don’t know if I’ve ever felt more lost over something that didn’t really matter.  Then my phone rang, and my one roommate had landed at SFO.  I would sleep in my house after all, and I wouldn’t have to ride Bart to a friends place with a golf bag and my balls hanging out.  Within 2 hours I was laughing about it.  The total ordeal actually made me forget about how much everything else sucked, ironically clearing my head. 

There’s the time I pissed my pants.   MS tends to mess with you in different ways.  One of which I’ve read about is lessening your ability to hold it when you really really have to piss.  So about 3 weeks before I decided to stop smoking and eased off drinking I’m at a happy hour for work.  I’m enjoying myself, but my minds elsewhere.  I was just starting to date a girl that I had met, and things were exciting.  My phone got a text.  Was I home?  Should she come over?  Me being insane I said yes.  I could have easily said I can be home in 1 hour or anything that a sane person would have said.  For some reason I thought it would work better if I acted like I was getting home RIGHT NOW.  So I ran out of my happy hour, jumped in the Acura and jetted towards Alameda. 

As I’m driving I realize that I’ve drank about 4 cups of water, 1 coffee, and 2 beers without taking a leak.  It’s coming and coming fast.  I manage to make it home, but as it has been for about a year, I have to piss so bad and it doesn’t feel like I can hold it like I used to.  The dumpster behind my apartment looks like a forgiving spot, but a neighbor is by the deck.  Fuck.  I have to go inside.  Being closer to the front of the building, and an elevator requiring less leak driving leg movement, I stumble/run into the lobby and hit the button. 

I get on the elevator hit my floor and wait…. when the door opens I sort of hold it/ shuffle to my apartment, way back at the end of the hallway.  I get to the last door and try my key. 

Not working. 

I try again and then look up.  I had hit 3rd floor, and am at 310 not 210.  I realize I have probably 2-3 minutes until she shows up, feel a sense of “oh shit” and immediately proceed to piss myself at a level that is reserved for people trying to do it.  Desperation leads to two things, and thankfully I have less quit in me than I thought, and my snap judgement was to move.

I ran downstairs, leaving a puddle in the hallway, throwing my shorts in the trash and jumping in the shower.  I sprayed off, jumped into a t shirt and gym shorts, and threw my towel into the bathroom just in time to run to the front door with 10 seconds to spare to open it up and put a huge smile on my face.  She had no idea.

There was numerous times where I thought to myself, why even try anymore.  There were numerous times when I realized how much I enjoyed life.  There was dancing to Ke$ha in Tahoe in my car.  There was the 40 minute craps roll where I probably tipped the dealers 200-300 bucks.  There was the time I accidentally put all of my chips in the circle in blackjack instead of playing the 10 dollar bet I had been playing because I was deep in conversation and had moved my seat (lost, and the dealer was at least nice enough to ask if he could give it back to me).   There was the time two days ago where my hand just started shaking after hitting golf balls for an hour for no reason expect maybe to freak me out.   There was the misguided and ill-fated trip to the trampoline park that ended with me dizzy and defeated.  There was the trip immediately following that to the Batting Cages that left me feeling like a champion for defeating myself in my first MS video, “I will never hit a fastball again.”  90mph setting, contact all day baby. 

There was Colorado and the mountains.  There was the group of young Navy Corpsmen that played volleyball with me, took the shots I bought for us to share, listened to my story about my grandfather’s ship in San Diego (The Midway), and helped my friend with sound medical advice when he sprained and tore ligaments in his ankle trying to play volleyball with 22 year old servicemen. 

There was the terrifying first time I told a girl that I was going on a date with about my MS (last week).  There was the first conversation with my one sister right before I posted everything on June 25th.  There was my first ever time going to Northstar Cafe for happy hour and not having a drink.  There was the decision to climb my mountain.  There was the plea for charity and a fundraising attempt.  There was all of my family and friends  chipping in with over $1200 to date for the climb that happens this weekend.   I was hoping for $100-200. 

There were the 30-35 pounds I’ve cut since June.  There was the night I looked at my legs and decided to run up a hill as hard as I could.  The last time I had ran, I broke my ankle so severely I ended up in the hospital for 2 days.  I made it up the hill, I coughed and wheezed, and I realized that after a week of no smoking, my lungs were already stronger.  There was the realization that my ankle was still weak, and in some pain, but that it also wasn’t something that could hold me back.  My limp that had been in my life for 6 months was gone within a day.

There was the day I walked 10 miles.  Something I probably haven’t done on purpose in 10-15 years.   There were numerous times when I’ve felt horrible, weak, and scared.   There were the times that i thought about conversations I’ve had since I announced my MS to everyone I know, the times where I was feeling the aforementioned bad thoughts.  The things people have sent me, have told me, have made me truly feel run through my head daily and keep me going through the worst times.

I needed that.  I am so thankful right now.  And I’m feeling 150% better on July 29th than I was on June 29th.  I am legitimately excited for life.   As I’ve made clear numerous times, there are going to be down days, but re-reading this blog, and reliving the last month of my life, has reminded me of one thing… that I have a great life.  Maybe the greatest I can imagine.  It’s hard to really appreciate everything, and I know I lack humbleness from time to time.

But, everyone in my life has done their best to remind me that there are great people in the world, and that humanity is the most amazing thing to ever exist.   That I am just a part of this wonderful mixed up puzzle we call life.  That my ability to try and see other people’s perspectives is my greatest quality, and that my curiosity is something that I want to feed!

I still wake up every morning with the sick feeling in my stomach that i have grown accustomed to in the last 2 months (maybe 2 years), but it leaves faster, comes back less, and it feels more out of place when it does arrive, like a substitute teacher that you didn’t like, when you know that the real teacher is coming back tomorrow.

Wonder, joy, and excitement are taking over.  I’m going to need everyone to keep this going from time to time.  I’ll probably need help talking through different things from many of the people that know me. 

In the next month I have my new MRI.  I go to my follow up in late August to see if my MS has worsened and if my meds are helping.  It’s no twist or coincidence that I’m going home to NJ / Philly 2 days after that follow up for a few weeks.  If it comes back bad, I don’t know how I will react.  I hope I continue to get strength from this and from all of the people I know.  I hope I still strive to better myself, and stay excited about everything.  I will see.

– Matt

 

Social Vanity

January 6, 2013 near Stockton, NJ

I’m convinced Russell Wilson is a qb from a football movie. He may be the easiest player to root for ever. Does the right thing gives 200% is a leader. Wow.

….. seriously?? Who in the hell cares?

I am a vain person at times.  I do like attention.  I do like hearing myself talk from time to time.  I used to like meeting new people and bouncing conversations off of everyone and learning as I went.  Somewhere along the line, I stopped listening as much.  I stopped engaging in conversations to learn and to connect, and started trying to win debates, and win over people.  I made my favorite part of life into a game, or something used to build up my self-confidence instead of better me as a person.

I’m pretty good at talking.  I feel that I’m pretty fantastic at meeting new people, and I’m great on first dates (cut to every girl that ever experienced it wondering what happened on date 2-10… or maybe not wondering at all), and I enjoy those conversations and getting to know new people.

The reason it gets worse later on, is that I have become self-centered to an extent that I’m not going to accept.  The same reason why I would drink when uncomfortable, drive to work every day, smoke cigarettes, and look for the overall easy way out, is what’s driven a ton of my social interactions.

This reason is instant gratification.   I feel like it’s a part of society that is growing in many of us.  We’re connected at a level that has never been possible.  We can get any information at any given time.  We can reach out and message anyone we know in like 20 different ways.  We carry computers in our pockets that are more powerful than anything we could have imagined 10 years ago.

These are all good things.  You’ll see hundreds of videos and even research decrying the lack of human intimacy in online conversations, but there are great things that come out of the spread of information.  Knowledge and freedom of that knowledge is the true power.  Say what you want about gun rights, but the real important thing to society is who controls how and when we are informed.    And all of this fast travelling information is definitely a good thing that gives power to the people.

Not going to get into that topic right now, but I have been struggling with the idea that technology has contributed to a bad part of myself….Instead of using the wealth of information to learn more, to grow as a person, I’ve used it to tell everyone how much fun I’m having on Facebook.  I’ve used it to waste time taking bullshit quizzes or to post Onion articles.   I’ve used it to brag and to act like I have friends if I’m left alone for 30 seconds in public.

Let’s take a look at some Matt Walker classics right now:

May 2nd, “You are wise Liz Lemon, like a genetically modified shark.”

Now, I love me some 30 Rock, and Tracy Morgan is hilarious.. but Tracy Morgan is hilarious, Matt Walker repeating Tracy Morgan is not….

April 20

“Best thing about vacationing in San Diego? Not having to leave California when it’s over. — at Virgin America Gate 25 Terminal 2 East.”

Soo….. this guy goes to SD for vacay?  He’s not leavin’ Cali though because he lives here!!!! Also, he flies Virgin because he’s a baller and wants everyone to know.  What a douche.

Matt Walker checked in at Karl Strauss Brewery & Restaurant on Foursquare.

April 16

What’s a zoo?”

Umm… so you like breweries?  So you’re in one now?  Cool dude.  Ahh I get it San Diego has a zoo and you didn’t go to it because you’re too cool for that.  300lb Italian guys aren’t hipsters, get over yourself.   What’s Foursquare?

March 13  Well, I want a pat on the back. 12 days no smoking. Never again.

That attention grabber didn’t work.  Smoked by March 17th, heavily, but do you know how many likes I got from this!!!

January 20

Day off, new whip. Drive up to check out bear republic and maybe a stop at lagunitas?

Don’t mind if I do

Well Matt Walker is living the goddamn life, and possibly is the coolest person to ever own a 2009 Acura and drink craft beers. You should’ve probably minded if I did.


Matt Walker
 at DeLorenzo’s Pizza

October 26, 2013 ·

Finally some good pizza. Actually, the best pizza

Really posting over pizza???  Actually, F that.  That post is post-worthy, and I want everyone to know I had enjoyed me some Delo’s, and for everyone in California to know they’ll never get something as good as this in a pizzeria.

 

Anyway, you get the idea.  These posts are useless.  They were all put online with a motive in the back of my mind, or at least to feed my subconscious.  I want my Facebook page to reflect who I want to be, who I want people to see me as.  I want to prove to everyone that I finally made it, and that I’m living the dream.  I want to impress any girl that I may have a shot with that’s a friend on Facebook.  I want to make sure ex’s know that I’m tearin’ it up!  (know (V) no: to believe something that may not be true).  I want to feel cool.  I’m 31 years old.  I’m not cool.  I don’t want to actually be cool.  I’m me, I embrace the fact that I’m not worried about being a douche-bag, and that I love to just have a good time.  Cool scares me, and is the antithesis to what I am.

I have a lot of stuff to be proud of, I have a lot of stuff to showcase.  But Facebook is hiding the parts of me that are probably the most worthy….  I’m grounded.  I get along with people and love meeting and learning about new people.  I love and used to cherish person to person interactions.  Now, I’ve caught myself checking Twitter at the bar because I’m afraid to talk to the person next to me when alone.  I’ve checked Facebook during dates with girls that I really liked.  I’ve forgotten the age old lesson one of my friends told me back in 2005 when he refused to let my friends look up an answer on his iPhone, “The day when the man that causes the biggest shit fit is right at the bar is NOT over!”

I’m sick of distractions and easy ways to get attention.  Today I deleted all of the apps on my phone that I don’t use for work, or for music.  I took off my auto-password on facebook and won’t look at it during work.  The only reason I’m keeping it at all is that I do like being able to stay in touch with friends, and I truly am starting to believe in what I’m doing for my MS.  I need this blog.  I need the videos, and the support I’ve gotten from each and every one of you has pushed me to do everything for the last month.

This was never about just getting more healthy for the MS.  It was always about living life the way I picture.  Finally being the person I want to be with no worries about how others think.  It was about doing things to help other people.

I don’t want to dilute my message (as a great friend pointed out today, and as I’ve felt for a few weeks now).  I don’t want to miss out on real life looking at a screen anymore.

If you really really need to know what IPA I think is great, which Arrested Development quote I’m thinking of, or what I think about Lebron’s latest move… call me.  I’ll gladly quote Anchorman, recite the lyrics to Triumph, or tell you about my next vacation.  I’ll await all 800 and some friends calling me tomorrow….

But, to the thanks of a ton of you, I’m sure, I will not be posting anything other than important stuff on Facebook.  I’m saying I’m ready to live life finally.  Let’s do it for real.

“You only live once, because.. JK, totally.

Guilt

pics from Galaxy 005

 

April 19, 2011:

You are not someone that can sit back and think you’re great when you’re not, and you are not someone that can give yourself a break.  You can take advantage of a situation and then feel that it is ok for you to do so, but you’ve never given yourself that leeway.  You hate yourself more than you let on, and while you believe that a lot of that has to do with your brain chemistry, a lot of you believes in this simple truth; make your own life and make yourself happy.  Simple, isn’t it?  If you are miserable, then what do you have to chance?  Think about it more, don’t fret and get anxious like you always do.  You’re done with the making up part of your life. You’ve suffered for your sins, now it’s time to move on.  Stop feeling sorry for yourself, stop feeling that you don’t deserve greatness…  Do the next step, and stop asking if what you’re doing is right and do what you know you should.

This was a full two years before My MS diagnosis.  I was living in State College, PA, right off the campus of Penn State.  I was in my last week of driving delivery pizzas for Pizza Hut.  The next week I would move to Philadelphia, jobless, and I would set out on my journey.

This mentality, these times of darkness, can be seen strewn throughout a journal that I wrote religiously in 2010, and periodically up until last year.  About 90% of the posts from the first 2 years are about my ex-girlfriend, and a lot of the 5-10 posts from 2012 to June 2014 reference her, or the effects lingering from her.  But a bunch of stuff is me talking to myself, giving advice, admonishing, and fretting over my mindset.

I tend to look back at it when things are dark, when things sort of just suck.  I haven’t determined if it makes me feel better or worse yet.  It usually just makes me feel.  I’m embarrassed to read how I felt about certain things, and I sometimes find clarity for problems in today’s life by reading what I was thinking on a random night in 2011.

This passage and this journal are why I look at my MS as an advantage, as a good thing.  I needed something.  I could see myself typing out the same sentences about 3-4 weeks ago if I’d popped open the journal.  Granted, I was in a cocky train ride of fun, money, success and girls for the last 3 months, but underneath that was darkness.

I don’t have time for that.  I don’t have the energy for it either.  I have to win.  I have to win myself over.  I don’t get how I can look at my life now, my situation now, and not feel absolute pride reading the words of a scared 28 year old wondering where life is going to take him from 4 years ago.  I want to start to do things to love myself, and not cockily.  I think I am finally doing just that.

I’m proud of a few things in my life.  I’m proud that I feel comfortable enough to let everyone in with this blog and videos.  I’m proud that I can look in the mirror every day, and want to keep going strong.  I am proud that I made something of myself through all the mistakes and swings.  I’m proud that I truly care about people and am there for those I care about more often than not.

Well that something I needed to realize all of that is here.  I feel like I grew up 15 years in 3 weeks.  Unfortunately, I can thank a disease.  My MS made me realize that “carpe diem” doesn’t cover everything, and that there are ways to take risks, seek adventures, and live life to the fullest, without being caught entirely in the moment with no regard for the future.  It made me realize carpe diem doesn’t mean drinking another beer in a bar I’ve been to 30 times.  It made me realize that I want to live.  That I went through my first real success and instantly tried to impress everyone that doubted me after my transgressions as a 20 year old.  I came home with my broken leg and threw money around.  I posted every trip and night out on Facebook  instantly.   I bought a $400 Michael Kors watch that I’ve worn only on dates and when I go out trying to look cool.  I spend too much money on a new wardrobe that I don’t plan on fitting in or caring about in a few months when it’s too big and useless.  I went to a Honda dealership to get an Accord, and drove out in the car every 24 year old buys to look like they have money, an Acura.

I don’t care about these things.  There have always been 4 things I care about.  I lose sight some times of these things, and what matters, but I know that they are what drives me in life.

1-      Family.  Everyone feels this way, but my aunt Bonny told me once that family is who’s there for you.  That you may think you have dozens of friends, but that family is there when it matters no matter what.   She’s right and all of them have been, always.

2-      Friends.  I also feel lucky that I have more than the 1-2 friends that you can always trust to be there too.  I can’t even guess how many people I know well at this point.  I want to be hanging out with my good friends, having a good time, all the time.  I want to be around people that push me to be better.  I have that with more than a few people in my life.

3-      Challenges.  I want to be pushed.  I want to push myself.   I want to accomplish. I want to help.  I want to feel a drive to wake up every morning and hit the ground running.

4-      New Experiences and understandings.  I love Lambertville, New Jersey.  I loved State College and Philadelphia.  I just always knew the northeast wasn’t the end for me.  I’ve run out of the experiences that I started when I came to SF.  I want to fully experience the West Coast.   I have more quests to make.  I want adventure, I want travel, I want to learn new things and experience as much as I can.

This is where I want to focus.  I feel strongly that I only get one shot here on Earth, and I’ve lived the hell out of it so far, but for about 13 years, that message in that caption from my journal has been with me,  in my head at all times.   That guilt and shame from not being what I could be has driven me mad, has thankfully also driven me to succeed as much as it drove me to be depressed.

I’m saying goodbye right now to that.  I’m done not feeling like I deserve to be with someone perfect for me romantically.  I’m done with being good in relationships until I start to like the person, because I feel instantly at that point like I’m not worth it, and try way too hard to not fuck it up.  I’m done feeling anxious that I will somehow mess up everything.  I’m done feeling sorry.  I’ve been through it.   I’m done feeling like I’m lucky all the time, and that I don’t make anything happen for me.

I’ll say it to anyone’s face, and have.  But I don’t think I meant it sincerely before, so here goes.  I’m sorry for taking advantage of the privileges provided to me from my family.  I’m sorry I didn’t reach my own potential for so long.  I’m sorry I didn’t take anything seriously.  I’m sorry people believed in me, and I didn’t follow through with everything.  I apologize to my parents, to my family, and to my friends that have helped me because they were in a better place than me.   I’m sorry to myself.  I’m sorry that I put worrying about relationships, life, and work ahead of opening my eyes and seeing the great things that were right there in all of those factors.  I’m sorry that this is the last time I’m going to say this about the past.

It’s July 20th, 2014.  I’m ready to be proud of myself.   Going home to Lambertville NJ after college to be a cook at Dilly’s Restaurant was the low point in 2005.  A low point that I didn’t get over for a bit.  In fact, maybe not until right at this instant.

I’m sorry it took MS to make me truly realize what is important to me.  I’m not sorry that I’m going to focus as much as I can on those things.  Through work, I won a free trip from being top earner in quarter 2 last week.  I wanted to go to the beach, to Mexico, to Hawaii, to Asia, etc.  I totally want to get to the firsts of those adventures.

I’m coming home.  I’ll be in New Jersey for two weeks, and I’d love to talk and see as many of the people that helped me be who I am now as I can.  If you see me on the street, say hi, I’ll gladly chat about everything.  I’ll talk about my plans for the future, many of which are up in the air and unknown (but I’m willing to listen to suggestions!).  I’ll talk about what I’m feeling, and what I think the plan is.  I’ll talk about old times.  I’ll talk about my life in SF.  I’ll talk about how thankful I am that I got to this point in my life from growing up where I did, around who I did, and being raised by who I did.

Just don’t expect me to apologize for anything again, because I’m done feeling guilty and ashamed.  I’m ready to make myself proud.

-Matt

First challenge?  Climbing Mt. Tam in 2 weeks…. Donate to help others overcome all sorts of challenges of their own

https://fundly.com/mounting-ms

With my 200, and 30 from a friend that I have, we’re already at $780.  Let’s get to $1k.

Bad Days

baddayI started writing this blog and shooting videos because I had no idea what to do.  I was just realizing that I was in full denial of my condition, and I wasn’t addressing my MS.  I figured this would help me to get it out, and to take personal accountability on a public stage.  I had no idea where it was going to go.  I had small ideas about posts, and actions, but nothing was concrete in my head.  I was just hurting and looking for a way to move forward. 

I didn’t take into account how I would feel about the strong reaction from friends and loved ones.   I didn’t think about how I would feel going forward.  I figured it would be easy to just keep going and writing. 

As I’ve progressed in my first month, I’ve started to notice some reluctance to write certain things or talk about the bad stuff.  The idea is that I don’t want people worrying about me.  I don’t want sympathy, and I don’t need it.  I’ve lived a fucking amazing life.  I’m going to live an even more amazing one going forward.  I made one promise to myself when I started writing out the first blog; that I would be totally honest and always keep in mind what I was feeling like at that first moment.   Because I wanted this to help just 1 person who stumbled across it and was lost, confused, and scared about some bad news.  I wanted them to know they’re not alone, just as I am realizing daily.

To those that care about me, I’m going to have bad days.  I’m going to have times when I’m sad, depressed, anxious, in pain, exhausted, mentally drained, off my path, and confused.  I’m going to feel pain, sadness, anger, and despair at times.  I’m going to go through thoughts that I could stop walking any day, thoughts that I will never find that person that I want to spend my life with.  Thoughts that no girl could ever fall in love with someone that may be disabled in the future.  Thoughts that I’ll never recreate the joy I had when I could just go play basketball for 2 hours.  Thoughts that all I want to do is say “fuck it” and have a blast without thinking about the repercussions.    

Well, yesterday was one of those days.  It started out similar to what I can only (sheepishly and naively) imagine it feels like to be awoken by a bombing raid siren.  I work up at 5:45AM with my ear ringing loudly.  My right side of my head felt like there was a ferocious gnome drilling behind my jaw.  

I sat in bed and watched an old episode of Parks and Rec.  Not even Ron Swanson could save me.  Fuck it, it was time to get up.  I showered, took a walk, and stopped to consider eating.  As I looked at the bagel shop, I thought about how I felt like a disgusting piece of crap and decided I wouldn’t eat today.  Uh oh… so we have physical pain, plus mental pain, plus self-confidence issues.  Banner day! 

So I get in my car, and refuse to lose the positivity that I’ve had going for 3 weeks.   I crank the Acura’s speakers and try to lose everything in some pump up music and inspiration.  Eminem, Kendrick, Metallica, Meatloaf, Dispatch, Sublime, Lil Wayne and Akon couldn’t do it for me. 

As I got to work I ate a granola bar and took my larger dose of Tecfidera.  Guess what?  Taking twice as much as I did last week has started to give me some side effects.  Nothing too serious, I just take more  trips to the bathroom than a pregnant woman.  And not fun ones.  

Looking over everything I had to do at work, I just felt lost.  I couldn’t concentrate on anything.  I started thinking about every bad thought you can let yourself slip to.  From “there are people who can’t walk that stay positive, and you’re being a pussy” to “I wonder what ___ is up to now? Our relationship wasn’t THAT bad” to “you have a date on Thursday, how do you bring up MS?”  This was my day.  My head was hurting, then racing, then hurting.  Then I’d almost fall asleep for 10 seconds and feel like I didn’t sleep in days.  When awake, I felt like I was going to puke from anxiety, and the meds.  Don’t worry I didn’t, I just almost crapped my pants 4 times.   I had about 8 hours of sleep the night before and have eaten better and exercised for 3 straight weeks. 

I tried to grab hold of everything and just scream.   I tried to just get over everything.  I left work the second I could, drove home, and planned on going for my first run in 10 months.  I got home and was beat.  The thoughts were still racing “How do I start swimming,” “I wonder what she really thought about me,” “When is the last time you had to really really try hard at something?” “why aren’t you playing basketball, you may never be able to again after a bad flare up.” 

Finally…. “What if I let myself and everyone else down.”  This was after abandoning my running plan, ordering Thai and watching TV with the roommate, and it was also time when I decided to write.  To get this out here.  I sat at my computer and started to realize something.   

I’m going to have those days when I feel horrible.  I’m going to have times when I feel weak.  I’m going to talk about it here, and I’m not letting it stop me EVER.

Why, because, I want to be honest with everyone and, most importantly, with myself.   Without those days I wouldn’t be me.  My opinion of myself is not always a great one.  But, I’m learning.  I’m learning that I do like myself.  I like that I care.  I like that I am loyal.  I like that I get overly excited and talk in hyperbole about everything (“this is the greatest song , show, joke, book, lake, dog, girl, cheesesteak ever!”).  I like that I fall in love easily, and that it’s usually as soon as I think someone cares about me and is a good person.  I like that I worry about everything, because I want to be better, because I want to make everyone else feel better.  I like that I haven’t gone out of my way to hurt someone in a long, long time.  I like that I take it really hard when I lose contact with a friend, or go through a breakup.   I like that I simultaneously feel like a douchbag, and am touched by sappy movies and shows.  I like that with these days, with these horrible thoughts; I can truly feel and embrace the great days.  I like that I can appreciate how happy I can be.   I like that I’ve never stopped being a happy and outgoing person.  I like that I feel despair and feel lost, because when you find it, it means that much more. 

What’s IT?  That’s the question.  I hate how cliché this line is, and at the same time I love it.

I don’t know what IT is, I don’t know if I ever will.  But, I’m not going to ever stop looking, and enjoying the search in the process.

 

-Matt

Donate, because thousands of people’s bad days are soo much worse than yours and mine.

https://fundly.com/mounting-ms?noguide=1#

Climbing The Mountain.

Logo-NMSS-NCC_high-res

 

 

Ok, this will be a short one… It’s just meant to go with the video and the tiny fundraiser I started today.

Check it out: https://fundly.com/mounting-ms

Basically I failed at a hike last year before I broke my ankle because I was lazy and out of shape.  I’m going to do the same hike in less than 4 weeks.  I am also raising some loot for The Northern California MS Society.  I will plan on matching $200 dollars if we get to that point (as of 12 midnight on 7/11/14, we are at $140 already), so I’m getting the checkbook out 🙂

Anyway,  the link is right here.  All of the money will go directly to charity, and if I do this in the future there will be multiple charities, not just the ones that directly effect me (personal pet peeve because I’m crazy and overthink everything).

Again that fundraiser is riiiiiiight here….

https://fundly.com/mounting-ms

I’m not asking for a ton of money, do whatever you can.  1 buck, 2 bucks.  that’s amazing.

Finally, any of my friends in SF.  Come with me.  Join me on the hike!  I can fit 5 people in the Acura, but we could find more cars.  Let’s go get it done together, and you can even laugh at me while I bitch and moan my way up the hill.

Thanks for all who donated, you are all awesome.

– Matt

Tobacco….

Tobacco…..

Tobacco….

smokingIn 1996, the most important person in my childhood died from cancer.

Both of my parents had to work hard and thankfully for me, I was able to spend as much of my first 14 years with my grandmother, Pat Walker.  She was the quintessential “pillar” of the community.   She knew everyone.   I can still picture her sitting in her chair, watching television, drinking a soda, and routinely knocking out hundreds of levels in Tetris like a champion.  She was most likely also smoking cigarettes.

I went through high school without ever having tried a single cigarette.  A lot of my friends chewed tobacco, and I had done that 2-3 times, throwing up violently after each attempt.

For some reason, I decided that I would chew tobacco right around my high school graduation.  It almost feels like I did it, because I wasn’t doing it to be cool now.  I don’t remember thinking that this was as harsh an action to my grandmother’s memory as smoking would have been, in fact I don’t remember thinking at all.

I moved on to Penn State.  Early college was filled with an occasional class, and hours of Counterstrike, aol chatting, and conversations over Natural Light and the occasional Yuengling.  These events usually were accompanied by a pinch of Skoal.   I know for a fact that the first thing I did while watching the second tower fall on 9/11 was reach for my tin.  Frat parties involved hiding a pinch from girls to get a tobacco fix and not seem disgusting.   My nickname, which I’ve always hated inside, Dippy.  You get where that comes from.

I would say that girls probably factored in to the transition to smoking.  A good percentage of the female population thought dipping was disgusting, and you were’t always smoking if you smoked.   Around my junior year, I also had gum surgery to repair damaged gums from “brushing too hard.”  To say the dentist misdiagnosed that one would be an understatement that I don’t need a medical degree to call out.  Constant tobacco use was grinding my lower gums.  I couldn’t drive, watch tv, do homework, play video games, or digest a meal without a pinch.

After the surgery, I couldn’t dip for a while.  I decided to quit, because I knew this was bad for me.  Around this time I smoked cigarettes for the first time.  I had never even learned how to inhale before, and I would just suck on it or puff it like a cigar.  I remember two of my friends teaching me how to inhale, as I smoked Marlboro Red’s or Cowboy Killers, which for some reason didn’t scare me enough as a nickname.

In the next few years I slowed down on the dipping and became, gasp, a smoker.  It was probably 2-3 years ago when I started to identify myself as that horrible word, although in reality it was probably true since I was about 24.   I quit for a year and a half in 2008, but after a month of lozenges and nicotine gum, I found my way back to chewing tobacco.

Cigarettes took over my life.  I hid them, poorly, from my family.  I made up rules that I thought meant that I was in control.  No smoking while I worked at the high school, don’t buy a pack of cigarettes during the week, don’t smoke in my car, don’t smoke outside my parents house, don’t smoke while walking to or from class when I went back to Penn State.

All of these rules were broken, but hey, “I could stop whenever I wanted!”  My storyline of a smoker basically consists of 3 parts.  Act one, I will never smoke a cigarette.  Act two, I’ll smoke what I want because I can just quit whenever, and I’m young!  Finally, act three, what happened? I would do anything to quit.  Next week is the perfect time to do it!

The dirty little secret that almost everyone doesn’t talk about with cigarettes is that you fucking love them.  A perfectly timed smoke is awesome.  The side of it that doesn’t come through here is that you slowly realize that you’re killing yourself.   Every puff you take hurts a little bit.  When you get fired up and quit for 8 days again, the first cigarette back sucks.

It’s like getting back together with that girl that you don’t want to, but it’s there, and you’re drunk, frustrated, stressed, bored, etc, etc.  It’s never like that first fling.  I can never replicate those days when I would smoke 4-5 cigarettes a weekend and love it.  You need them more, and hate them more at the same time.

Cigarettes have reeked havoc on me and I know it.  My lungs, aren’t strong anymore.  I cough all day, and have been told that I wheeze at night when I’m sleeping.  My snoring is fairly horrific, or so I’m told, and especially after a day of heavy smoking.  I smell all the time, and can’t buy white or light colored pillow covers because the tobacco stains actually come out on the sheets.   My cloths smell and I carry cologne all the time.

Through all of this, as I’m typing, the main thought in my head is how much I want a cigarette.  I actually stared at Skoal, which I haven’t done consistently since I “tried to quit smoking” for 1.5 years in 2008-9, and thought about buying it today.  This is because I stopped yesterday.  I’ve announced on Facebook that I’m quitting 2 times now.  Both times it brought lots of praise and support, and both times I was smoking within a month.

It has to be different now.  According to a few studies on MS and smoking, smokers are more likely to move from relapsing-remitting MS to secondary progressive MS.   Smoking while being diagnosed with MS is like smoking when you are in remission from cancer.  Every doctor I’ve seen has said the number one thing I need to do is quit smoking.

It’s only been 28  hours, but this feels like it will last for 28 years plus.  I just can’t smoke.  I am not going to smoke for 1 day.  That day is tomorrow.  Then, I won’t smoke for another day, and another, and another, and another….  I have plenty a reason to move on from this devilish infatuation.

What I realized and what made me start this blog, was that I wanted to live.  I want to live for real.  I’m 31 years old, and while I may have already damaged myself from tobacco use, I can say with certainty that I will live longer if I stop smoking now.

I want to see as many sunrises over the Pacific that I can, I want to have that feeling in my stomach from kissing a girl that you are getting to know, and falling for.  I want to drive down the Pacific Coast Highway with my moon roof open on a sunny day as much as possible.  I want to see my little sisters grow up, graduate, and find their places in the world.  I want to be in a position to help my parents when they get older, and not a position where they have to help me.  I want to own a house, a truck, a dog, and maybe even a boat.  I want to travel, I want to see the damn world like I haven’t yet.  I want to wake up in the morning and not cough.  I want to sleep next to someone all night and not have them have that look in their eye that screams “something’s wrong with your breathing.”

I don’t want to help my MS advance.  I don’t want to breath through a tube.  I don’t want to pay any more goddamn money to Philip Morris.  I don’t want to set a horrible example for my younger family members.  I don’t want to forget that one of the best gifts my grandmother had ever given me, was a strong desire to not even be curious about tobacco growing up.  I don’t want to be a statistic.

I’m quitting fucking smoking.  It’s going to suck.  It’s going to be one of the hardest things that I’ve ever done, even though, if I had just never smoked, I would have never wanted to.

I don’t need messages of sympathy or congrats or you can do this, because I’m not doing this to impress anyone anymore.  I’m doing this for me.  I’m not smoking cigarettes, and I’m not using tobacco.  I’ll do this for Matthew Walker, and probably Pat Walker too.

 

Matt, 1 day tobacco free.

Tecfidera, Swordfish, Volleyball, and Mountains…

So I took my first dose of medicine for MS today.  For some reason, I sort of stared at the bottle for 10 minutes, like if I didn’t ingest the advanced medicine that will hopefully help me immensely, it somehow wouldn’t be real.  Like, there was a downside to starting the thing designed by brilliant scientists to help me live a normal life.  Like, I could just go back to where I was months ago, close my eyes, and live like a 22 year old again.

I don’t know why I have been able to accept that I have MS, but I can’t accept dealing with it.  I feel like I am.  I feel like since I yelled it out as loud as I can, I have been on the right road.   I am still not sure though.  It feels as if these actions have been the easy ones.  The immediate ones.   The emotional ones.

Up next comes work.  Quitting smoking and getting in shape are not going to be easy actions.  I have let my leg rule my thoughts for 9 months, and I found out in the last week that so much of the “pain” is in my head.  I ran across the street, and played volleyball with 22 year olds in Colorado.  Neither killed me.  I need to get a brace so that I can do more on the ankle, but the only thing holding me back from doing more is not a ligament, a bone, or a joint.  It’s either my head or my heart, and I have to just go at it.

Eating healthy shouldn’t be as hard in the Bay Area.  The only thing that will be hard to cut back on is carbs, as their is a plush amount of healthy food around here.  But mac and cheese?  Breakfast sandwiches?  Grilled F-ing cheese?  I’ll miss eating that as much as I do.

I haven’t totally learned what my diet should look like to best deal with MS.  All that I know is that I need to get sunlight, and vitamin D.  I will learn more in the coming weeks, I’m sure.  I have started to think about doing more research.  I need to do that.

I like cooking, I like the outdoors, and I like sports.  This shouldn’t be hard.  I want to push myself though.  I almost want it to be harder than I thought it would be, just for the achievement.

I set it up that I couldn’t just take everything easy, and that was totally the intended purpose.  I have lived long enough with some sense of hiding something.  I didn’t want anyone to not know, because I wanted to be held accountable for my actions.  I feel like I did that.

So, at this point, I have a weekend in Tahoe (I know I was just in Colorado, the West Coast is amazing).  Then, I am getting to work.  With all of my medical steps taken care of, at least until I go get my MRI in August, it’s time to start to work on two things, my health, and my mind.

I haven’t read as much about anything as I used to.  I haven’t exercised for real since I broke my ankle.  I actually look forward to both.  I want to enjoy nature around here, so hiking and other activities in the wild seem like a good way to go.

I want to go camping, I want to go kayaking, I want to go sailing.  I can do all 3 easily, and will.

Taking Tecidera could be my Red Pill, and I’m going to go see reality.  Driving through Colorado was beautiful.  Seeing the mountains and rivers was awe inspiring.  I don’t feel like I need to scale large mountains immediately, as I still want to take in the view.

I wanted to keep this updated, but with two vacations in a row, I’m sort of in a short break for the plan.  Next week it picks up and I feel ready.

Oh yeah, I baked swordfish for dinner, it was delicious.

– Matt