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: August, 2014

Peaks > Valleys

After a dark, dark week there is light.

I ventured into a UCSF’s medical center today, and for the first time I was armed with information.  I was armed with questions.  I left feeling better than I have in weeks.

First things first, I do have active lesions and new lesions.  Now, I definitely had a flare up in April/May that probably occurred because I wasn’t dealing with my disease, because I waited until June to start medication that I should have been on for over a year. 

Tecfidera doesn’t work for everyone with MS, so there’s a chance that I will end up having to try something new.   But, the lesions I do have aren’t indicative of the efficacy of Tecfidera.  The medication typically takes a few months to start working.  When I go for my MRI in January, I will know much more about how it is working for me. 

I don’t have that many new lesions, and again, it could be a good thing, or any of them could be a bad thing.  Like everything with MS, we just don’t know where my path leads. 

My neurologist seems to think that I 100% have Relapsing-Remitting MS, and that is definitely a good thing.  While men make up just 1/3ish of all MS cases, most men have a more active and vicious forms of MS.  My symptoms seem to point to me not having it “that bad.”   I’ve been lucky, I haven’t had my mobility seriously effected yet.  While I have vision issues, auditory issues, balance issues, and some fatigue, I haven’t been hospitalized, and I haven’t had to miss weeks of work/life. 

This could mean that my MS isn’t progressing super actively, or it could mean nothing.  Again, MS is a sly, sneaky jerkoff, and you can’t predict much. 

My vitamin D levels are low.  While there is no “proof” of high vitamin D helping with MS symptons and progression, there is a correlation with low levels and people that have more frequent relapses.  I’m starting to take supplements for this.

I’ve lost 52 pounds.  I feel better overall.

Depression is a side effect of some MS medications, but not Tecfidera.  Let’s all root that this miracle medicine ends up working.  MS does physically cause depression, and with any lifelong disease comes stress, and a level of anxiety that anyone would have to deal with. 

I need to find ways to exercise more, and keep going because of the last two statements.  Getting outside, and experiencing California helps me avoid depression, and will also help me keep going on weight loss.  I need to get smaller, to be frank, because any extra weight I’m carrying will only make a flareup and loss of motor skills more devastating.   Swimming, elliptical machines, long walks, and maybe riding a bike are in play. 

I fully understand something I didn’t want to think about.  There may have not been a pot-hole involved in my broken ankle.  Alcohol mixed with running, mixed with a 350 pound body, mixed with the effects of Multiple Sclerosis probably put this 9 inch plate in my leg. 

I have more to learn.  I don’t know enough about MS, and although I have an interest in neurology, took classes in it, and know the basics of the brain’s anatomy I don’t know enough off hand about what is affecting me.  I can handle learning new information and I can handle it because I am strong enough to stare this down and want to win now.

I am going through the visual testing again, and have to go back in to UCSF to both develop a more accurate baseline to test against, and to see what damage has happened since my last tests in January 2013. 

I have a journey ahead of me, but who doesn’t.  In reality, who knows what’s going to happen tomorrow?   No one, and that’s what makes this journey exciting. 

I walked in scared, I walked out still scared, but a little more knowledgeable today.   I, luckily, got caught in some Bay Bridge traffic so I could think on my way home. 

For the last 3 months I have gone through some stuff.  Most of the bad stuff comes directly out of me freaking out about my situation.  I look internally for motivation and when it’s there it’s great.  When I lose it, I lose everything that makes me me. 

I have a lot to be proud of.  I have a lot to strive for and I have a lot to accomplish in life.  MS can’t and won’t take that away from me.  I am not MS.  MS is not me.  It’s something that I’m dealing with, it’s something that can make me feel horrible, but can’t make me horrible. 

I give everyone I know the benefit of the doubt, use empathy to guide my views on other people.  I can’t think of one person in the world that I hate.  People who wrong me, and people that are “bad,” probably got that way by dealing with stuff in their lives. 

It’s time to look at myself with that mindset.  Cycling from being really hard on myself and not proud of anything I do, to super cocky and reckless creates a scenario where I know what’s coming and can’t avoid it. 

Honestly, a part of me took my diagnoses so easily because I felt like I deserved “something.”   I have never tried super hard to take care of myself, and I have never been one to blame others for anything that happens to me.  I felt like it just made some sense. 

That’s bullshit.  I don’t think it’s cocky for me to believe that when I can get out of my own way I am a successful, driven, caring, and helping person.  I get good things from other people because I throw out good things.  I don’t have a jealousy issue and am generally happy for my friends when they do great things. 

For the past two weeks I have questioned my decision to throw this blog out there.  During the bad times it’s because I just wanted to fully go down the old road of “fuck it” and just have a good time without dealing with any repercussions from those around me.   During the good times, it’s because I don’t want to be defined as Matt With MS. 

While some valid concerns do exist, writing a new post always makes me feel a little better.   A lot of times I could address the audience I’m writing to, simply as “Myself.”   It’s cathartic.  It helps me be honest internally.   It helps me realize things about myself a week later, instead of 2-3 months down the line. 

For the last week things started to turn on. I looked at my tasks at work, and started to feel like I wanted to accomplish something.  I look at the sky when I walk outside and smile.  I look at my phone and don’t think about who I can call that hasn’t had to deal with me that much yet.  I look at other people in the eye that I don’t know, as opposed to avoiding eye contact.  I see women looking at me, and I’m noticing more receptive looks.  I look in the mirror and don’t think about all that needs to change.  I look at my life and see promise and opportunity. 

I will fall in love again, I will find joy in athletics again, and I will have success at work again.  I’m not someone that quits for real, I just fight the idea that I want to give up.   I’m not going to let myself ever stop.   I look at the same message I got through a phone 3 weeks ago, told directly to me in person today, and I see so much silver lining that I can’t help but be positive. 

I am flying east on Friday, and I am excited to come home for comfort reasons, for family, and for friends.  But, possibly selfishly, I am excited to come home proud of myself.  Not cocky, like I was in the winter, but actually proud.  I’ve been humbled by MS, I’ve been scared by it, and I’ve been distraught from it.  But I haven’t been defeated, and dare I say, I’m not even playing from behind anymore. 

I listened to every reason why I shouldn’t run on solid ground, and I don’t plan on being stupid to train.  But, I will run outside on one day this year, October 11th.  To get there, I am getting back to walking more, like I did the last 2 months, until last week.  I’m also not talking about joining a gym, I’m joining.  On October 11th I will be 32 years old for 1 day, I will also finish the MS Muckfest.  The last 5k I participated in didn’t involve mud or obstacles, and it was in 2001 for a 9/11 fundraiser.  13 years later, I’m going to win. 

– Matt

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Moving forward….

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A sign sits above my TV in my bedroom.  It reads “Never Give Up.”  Being a successful 31 year old with no history of drugs, having never been disabled seriously, or an arrest record, it feels a little over the top.   It feels like it’s a bit more serious than it needs to be.  It feels ridiculous, because what I have I had to overcome?

But it’s not. 

Only those that know me closely know the sad side.  Know the dark side.  My great friends have heard it and lived it with me.  My romantic relationships tend to center on it after a point.  My family has had to deal with it too. 

I’m not someone that has ever hurt anyone else knowingly and purposely.  My biggest fight story involves me calling someone a “pussy” after he punched me in the face.  That’s not a coincidence. 

I do, however, tend to make things really hard on myself.  It happened at Penn State back in 2005.  I went through 3 years  of college with minimal effort and a 2.85 gpa in about 4 different majors.  Then something switched.  I can’t even begin to guess what was the exact reason I started to feel anxiety every minute of the day, and I can’t even begin to describe the thoughts that went through my head on a daily basis. 

Basically, I just stopped going to class.  I didn’t withdrawal, because next week I was “definitely” going to start going again.  It was just today, and tomorrow would be better.  But it wasn’t.  In the beginning I would go outside and wait for the bus, just to get off downtown in State College and stare at the hill in front of Old Main, only to choose to walk the opposite direction to grab breakfast or maybe to play basketball. 

I would sometimes ride the bus a full 1 hour circle back to my apartment and not even get off.  I started reading.  I plowed through a ton of Hunter S. Thompson, Vonnegut, and Bukowski, a ton of non-fiction, never a text book.   I would watch television and play GTA: San Andreas and MLB 2k5 non-stop when I wasn’t reading.  I’d wait until my roomates came home and lie about how class was that day.

I’d never want to be alone.  I’d always be around someone.  Whether it was out at a bar, shopping for groceries, or playing a sport, I would just make sure to not be alone.  Distractions were the only way around my incessant rumination. 

After finishing the Fall semester with a 0.0 GPA, I went home for winter break, and lied about everything.  I got inspired by being around family and I didn’t want to let them down.  I was going to go back and get it done.  Go back and take classes in the Spring, do well, and then I’d come clean about the fall.

I took out a loan with my mother co-signing and paid the tuition bill without thinking about it.  I went back and in January got 3 A’s on my first 3 tests.  Then I was late for an exam.  The professor looked me in the eye when I walked in, didn’t listen to my excuses, and said I’d get a 0 and there was no way to make it up.

I couldn’t drop any more classes in late-drop, as I’d used all of that up.  This was cataclysmic for me at the time.  I remember coming home in a daze,  and waiting for my friends to be around so I could just go out and have fun.  Then things went back to the darkness, and I spent the last 4 months of college living with some of the best friends anyone has made in the world.   I got wreckless, and I partied too much, culminating with one of the biggest parties State College saw in 2005 where the cops came and wanted to find someone to charge with serving minors. 

It was a party like you’d see in movies.  About 400-1000 people in University Terrace, a band, 22 kegs.  It was also the day where I proved how bad of shape I was actually in, and how I’m a pretty good person at times. 

I took the blame.  There were 12 of us that had thrown the party, but everyone else was graduating and going places in 3 weeks.  I felt that taking the blame was the best way for me to do something that mattered that semester.  I did. 

After graduation I tried to hang on.  I lived by myself in State College for a few weeks, went to visit different people, and finally, as I was approaching rock bottom, my parents called. 

I had to go back to Lambertville, New Jersey.  Mr. “Most Likely to Succeed” was going back to flipping burgers at Dilly’s Restaurant. 

It has crept in a few times over the years.  Usually after I try something big, and experience some failure.  It happened when I went back to Penn State in 2009, and didn’t enroll in school for the fall.  I met a girl that would be the next 4 years of my life, and enrolled in the spring to impress her.  It happened that summer when she went home to New Jersey and broke up with me for 2 months.   It happened when I moved here and didn’t get a placement for my first 4 months at work. 

All of these times, I was able to use lessons I’ve learned in my life and drive to just plow through it.  I’ve never been able to feel anything but guilty looking back on these periods of my life after getting through them. 

A few months ago, everything ended with the aforementioned girlfriend.  I started to be a mess right away.  2 weeks of hell followed, and seeing someone that you still loved wanting you to be hurt was atrocious.  Things could have been worse, but I had lived out here for a while and had gotten over the idea of ever being together with this person already, but it still hurt, and I still cared. 

I met someone quickly and things went pretty fast.  I threw all of my chances at being happy into that.  I kept going at work, and finished up the best 6 months of my professional life.  Then I sort of coasted.  I was literally feeling about as happy and proud as I had ever felt.  That morphed into cockiness. 

I spent a ton of money travelling, going out, and on new clothes.  I looked in the mirror every morning and was feeling like nothing could touch me. 

Then things fell apart.  I used my confidence to propel me to go back to the doctor’s for MS.  I started dealing with that and found out what I needed to do.  I paused on ordering my medicine, as they were asking for a $500 co-pay and that seemed too expensive.

Things fell apart with the new girl, my success at worked fizzled as I got content and lazy, and I started going back to a place that I haven’t been in for real in 12 years.  I could feel the anxiety and depression coming.  I wanted to do something drastic.  I wanted to stop it.  To tell it I was in charge.  I made a video and wrote a journal post, and I decided to come clean with everything.  To tell all of my family and friends that I was not doing anything about my disease and that I was going to start.  To tell myself that living for fleeting fun and euphoria was not a long term plan and not a way to live.  To tell myself that I was scared, but that I could win, I could prosper. 

I threw everything into MS, into my health.  I stopped smoking, stopped drinking and started exercising.  I thought up the hike and the fundraiser and spent hours a day thinking about it, and thinking about way to politely ask my friends for more money.  I thought about what it would feel like to climb that mountain.  I thought about the symbolism. 

After climbing the mountain, I realized my next mountain was real life.  It was getting back to what I have to do on a day to day basis.  I started to get motivated, and I started to do the things I needed to do. 

Then the doctor called me and all of a sudden I realized that my MS was a real thing.  That things were getting a little worse, and that I needed to take it even more seriously.

Over the last few weeks everything that happens to me seems amplified.  Bad things happen and I take them really really hard.  I had the night on the golf course where I lost my keys and had to get a whole new set because of the chip in my car.  My tire blew out last week and I had to get it changed.  

For the first time in a few months I had a day where I decided to just get drunk as hell because I couldn’t think about everything.   I bought cigarettes and threw out the pack after smoking 3 of them. 

I found out that I had never completed my online automatic payments for my Acura back in the beginning of June.  I also found out the bank that had my car loan didn’t have a correct phone number for me. 

I found this out when I walked out front and my car was gone.  I am in the process of getting that straightened out.  I bought more cigarettes and didn’t throw the pack out.

I had a conversation last week that resonated.  I was embarrassed by doing something as stupid as not checking my bank account statements thoroughly, and I was sick of being a drain on my friends and family all the time, so I haven’t had as many talks. 

“You’ve come so far, and you’d done so much.  You’re a resilient person.  And you let bad things roll off your back.  Don’t take this situation, which, in reality isn’t that bad, and let it make you do something that will be a really bad situation that you can’t come back from.”

I’m paraphrasing, but that was the gist.  It was directly about me smoking again.  I spent the last 16 hours watching Friday Night Lights and sitting in my bedroom thinking.

I finally fell asleep around 3am, just in time to miss the 6.1 earthquake that rocked the Bay Area.  I woke up at around 6:30 to just turn on Friday Night Lights and keep watching TV.

I’m not doing this.  I’m not going to let myself be the person I have been before.  I’m going to keep fighting and I’m going to keep progressing.  I’ve come too far in the last 10 years, and in the last 2 months to let anything derail me. 

If I don’t use everything to make me stronger, if I don’t truly start to care about myself, and like myself, and if I don’t keep a fighter’s mentality, then MS will win.  I can’t let that happen. 

I’m coming home next week, and I can’t lie, I need it.  I’m going to take this week, get my car, focus on work, and go to the doctors Wed night and learn as much as I can.  I’m going to walk out of that office, and even if I hear things that scare me, that sound bad; I am going to jump right back into it. 

My nickname in college was “Dippy” from chewing tobacco, and also probably just being a fun loving lush.  I hate that name. 

When I was sitting in Vegas, right after I talked to my neurologist, I called one of my best friends to talk me off the ledge. 

“You got this. (inserted a web link to my fundraiser that raised 2146 dollars) Dippy is back at the bottom of that mountain.”

Let’s prove him right.

Inspiration

This is a rollercoaster…. There’s more valleys than hills at this point.  This week I went really low, then I tried to jump up.  Then I fell off the wagon on cigarettes and spent the last two days drinking away the pain.  It worked.  It sort of made sense.  It seemed normal.  Then I woke up and realized that I’m not OK being this person again. 

A great friend pointed out to me that last month was something that was real.  Being alone, being sober always and having to be ok with “me” was eye opening.  I don’t know if I can go back to being who I was before.  I don’t think that’s a bad thing. 

Then I watched the story of Pete Frates.  He’s the guy behind the ALS challenge.  He’s why it happens.  He’s an ex college baseball player, who was diagnosed with ALS at 27.  He’s been through it all the last few years.  He’s not just dealing, he’s changing the world.  He’s doing this through his friends.  He’s doing this through being strong.  He’s someone that I’d give everything to have an ounce of his courage. 

There’s countless stories.  Look on Google.  Type in courageous or inspiring, and realize inspiration.  It’s there.  It’s everywhere.  People struggle.  That’s life.  People are exceptional.  Type in ___ disease and inspirational into any search engine and you’ll find plenty tear worthy stories. 

People survive.  People flourish.  People exceed expectations every day.

There’s no reason I can’t flourish.  I don’t think I’ll ever have it in me to be the type of inspiration that someone like Pete is.  I don’t even want to pretend that I can be that.  But, if I can help just one person realize that life is out there all around them, and that feelings and effects are not as important as experiences and actions, then I feel like I’m doing something great. 

In the last 40 days I’ve had 35 great and productive days towards a healthy life.   I’ve had 5 unhealthy ones.  Compare that to the opposite for the previous 40 days and I can feel a little better. 

I 100% don’t know what I want to do in my life.  I 100% acknowledge this.  I’m pretty damn scared to even think about what I would want if I could do anything. 

But here’s the thing.   If you look at people like Pete Frates, if you look at the people that succumbed to cancer way too young, if you look at the war vets that were horrifically injured, and if you look at the people involved in life changing accidents, there’s no way I can feel ok with not feeling great about my life. 

I used to just see these videos and feel sad, and sympathetic.   Now I feel a mix of guilty, scared, and hypocritical.  Mixed with that is a drive.  A drive to really enjoy this life, to really get things out of my day to day.  To have a great time for once because of me, and not because of attention, or praise. 

 

That’s why I’m thankful for these heroes.  People that stand for something bigger than themselves.  People that change lives.  People that look in the mirror, see pain, see terror, and go on to fight every day. 

ALS received $1.7 million in donations in this month last year.  The foundation is at $13.3M right now for the same time period. 

Facebook and a need for attention are driving this particular fundraiser to some extent, but Pete’s drive is behind a lot of it.  That drive is in all of us.  It just has to be brought out by something that we care about.  That thing can be life.  That thing can be other people.  That thing can be anything that pushes you to be better.  I hope I’m that thing for me at some point.

New Video Blog

Feeling so much better in the last two days.  A combo of friends, family, reflection, and positive thoughts have driven me to a little more happiness. 

I Have MS. Video 3: Perspective

I hope you enjoy it. 

MS is BS.  Live your life

You Can Do This??

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Anyone that has read the last 2 or 3 posts, and everyone in my life, knows that I’m not in a good place right now.   Getting my call from the doctor wasn’t totally bad news, but I’ve taken it like a brick to the face. It wasn’t close to good news, but it was what you expected. I’ve felt nothing but despair, confusion, anxiety, panic, and nothingness since I heard it.

The only times I’ve felt good where when I’m with people I know. I could be sitting in a room full of strangers and feel alone. That’s not me. I’m outgoing. I like talking to new people. I’m falling back into the worst parts of my life, the times where I wasn’t myself, where I didn’t keep going, or chugging.

First, the over the top self-confidence boost.

I’m strong. I’ve been through some stuff for the last 3 years, and I created a lot of stuff for myself in early adulthood. I’ve never learned to be mature or responsible 100% of the time, but overall my life has been a steady upward progression for the last 9 years. I meet new people. Those people tend to like me. I care about people. Many people tend to care about me in return. I have so many numbers in my phone of people that I feel close to, that this week, while I’m losing my mind, I can’t figure out who to bother with my troubles. I’m goddamn good at what I do. I’m caring, fun, energetic, funny, and kind.

I got an email today from the national MS Society thanking me for raising over 2000 dollars, and it helped remind me why I’m going to keep going.

With this being said, I’m in such a bad place that I can’t do anything without falling into Alice’s Rabbit Hole of deep despair.   I start working and see an ad for something to do with MS, Fuck you Google. I get a note from someone on Facebook saying good things, and see a girl I knew 3 years ago, and start to wonder about every girl I’ve ever wanted to date. I send a message to a Tinder match, and don’t get an answer and start to think “they must have actually looked at me and said no.” I see an ad for some place I want to travel, and think about how I may not have time to do all that I want to do. I start typing to pump myself up, and end up tying about how absolutely horrible I feel. I talk to family or friends and get advice on what to think, say they’re right, get pumped up and realize that I’m trying to trick myself into being in a good place, and lose my mind.  

I’m not functioning right now. It’s that simple. I’m exceptional at what I need to do when I’m focused.

“You can do this?”

I told people on YouTube, whom were just diagnosed with MS, that same statement, and I can’t say it to myself right now.

From my past (school, relationships, myself) I know a ton about depression. I know the clinical definition, I know the warning signs, and I know the symptoms. I know the relaxation techniques I’ve learned to tell other people to stop ruminating, and I’ve learned what someone should do when they feel it coming on. I know the things you shouldn’t do, and the critical thinking that can be used to adjust someone’s damaged and completely off-base thoughts and processes when that black cloud is following someone everywhere.

I know that I’m dealing with a devil’s cocktail of reasons and causes for depression. Life-long, possibly degenerative disease, coming off of a co-dependent 4 year relationship, and also, the fact that MS can physical destroy the neurons in parts of my brain that control mood.

It’s time to apply critical thought to myself. I have had entirely too much good stuff happen in the last two months to just let it go, to just wallow because of some bad news that I either would of avoided, or would have found out earlier if I took everything seriously 3.5 years ago when I started to feel horrible.

In those years, I went from being a new employee at my old company to being a top 3 producer, to moving to SF and becoming top biller in a company full of all-star recruiters. I used denial and a steady focus on a mix of socializing and work over health in my life to push forward with vigor.  But, I got there. 

So, I don’t have to feel guilty about this period of my life. I don’t have to feel guilty because most people take time to adjust, to fully comprehend what they want from their life in the face of really bad news.

I need to apply that to my mental health and to my physical well-being now, or I’m going to lose all of those incredible things I’ve built.

I have to have a plan. I have to start again, like the last two months didn’t happen, while acknowledging that they did. They were great. It just was a flimsy existence. One that could be destroyed by a 4 minute conversation that only confirmed what I already thought. My MS wasn’t going anywhere, and it was changing me.

So we’re here now. Even after typing this, I still feel like I am not sure what to do next. I have stopped and paused at this point after typing like a maniac for that last 15 minutes. I probably paused longer on the plan than it took to write everything else…

If you asked me how I felt in 2012, I would have probably said great. I was in a relationship, doing really well at work, and living a fun life. If you asked me on Feb 2nd, 2013, I would have been ecstatic, I was about to drive to San Francisco to start a new job. If you asked me in January of this year, I was happy, as I could see that I was turning the corner at work and knew what I was doing all the time. If you asked me in June, I would probably have said it was the best I’ve ever been. But all of these things were without me focusing on MS. That doesn’t mean they weren’t real. It doesn’t mean that good things weren’t happening. It doesn’t mean that parts of my life weren’t exciting and full.

When looking for a plan now, I see it not clearly. I see it as if none of those parts of my life are ok. Everything is in disarray. That’s just not true, but it will be if I let it get that way.

I’m single, big deal I’m better with dating than I ever was, more comfortable in myself, and know what I want. I spent a ton of money, big deal, I live in San Francisco everyone does, and I can just start being smarter about that. I’m still out of shape, big deal, I am in better shape than I have been in over a year, and probably longer. I have MS, big deal, a few millions people do, and at least, now you’re acknowledging it and doing something about it for the first time in years.  I haven’t been focused or good at work in two months, big deal, you’ve done it before, are a great goddamn recruiter and can just do it again.

It’s not time to sit around anymore feeling sorry for myself. It’s not time to start searching for comfort everywhere. It’s not like you lost all of that confidence that you had gained. The confidence that was blatantly apparent to anyone around you in May and June.  

Stop saying I “Should” do this or that. Start saying “I will.”

I’m going to wake up tomorrow and say “Fuck you” to that sick feeling in my stomach. I’m going to stop checking to see who’s online because I wonder if everyone is happier than me.   I’m going to stop wondering about the future. I’m going to just start doing shit now. I’m going to stop googling MS and do actual research.   I’m going to reach out to the MS foundation and see if there is more people for me to talk with. I’m going to find real questions to ask when I go into my meeting with my doctor on August 28th. I’m going to start talking to someone about my mental health. I’m not ashamed of that. I’m not “crazy” I just take things hard. It’s what makes me caring, it’s what makes me lovable, it’s what makes me a hopeless romantic. I’m fine with all of that.

I’m in a really bad place. I’m ok admitting that. I’m just not alright with accepting it.

Climb mountains, tell the people you love that you do, try new things, walk instead of drive, call that candidate at work instead of emailing, don’t let distractions put you in a bad place, hit on that girl that you see, make a move when you’re into someone, try new foods, start saving for the future, figure out your medical bills, be there and listen to your friends instead of making everything into your issues, look in the mirror and see the guy that you saw two weeks ago, look in the mirror and see the a great guy that you can be. Be that guy. It’s a hard decision to make and it takes hard work. Do it.

You’ve told yourself that you don’t ever want to be a sad story and that you didn’t want sympathy and that hasn’t changed now. Go get it, you are a goddamn champion.  

I will not be defined by my Multiple Sclerosis, and I will not let this beat me. It’s time to get after it again.

On October 11th, the day after my birthday, I’m doing the Muckfest. That’s 5k of running and fun obstacles. I’m not doing it as a charity case, I’m running. Let’s get that. I have 1 deal at work this quarter, after have at least 3 for 4 straight quarters and 18 in the last 11 months. Get 2-3 more. I have lost about 45 pounds until gaining back 14 in the last two weeks, get back on track and start towards your goal. 230 pounds, and I jump out of an airplane. Screw it, it’s on.

I’m going to go for a walk. I’m going to grab something healthy to eat for dinner, and I’m going to start looking for the RIGHT people to talk to. I still feel like shit, but that doesn’t mean I have to act like it.

You’re goddamn right, You Can Do This, Matt, now go do it.

Vegas…

Last Thursday I learned that I had new and active lesions all over my brain.

I was sitting at a bar on Fremont St, about to eat dinner on my first night in Las Vegas, already a bit buzzed.

Those that know me well, know I have a the ability to go off the deep end in Las Vegas or Atlantic City when I don’t care about myself, hell, even when I just get a little too drunk and make a bad decision. Las Vegas is the site of probably the action I feel worst about in my entire life.

About a month after I moved to San Francisco, with too much help from my parents for a 30 year old to even get, I officially broke up with my ex of 4 years. That same weekend, one of my longest friends was having a bachelor’s party in Las Vegas. About 10-15 of my high school friends would be there.

I had spent so much money on my trip out to SF, and I had such high rent living in Lower Haight, that it wasn’t the right idea to go out. My dad and my step-mother saw my relationship status on Facebook (again, I’m 30) and told me to do it, that they would help with the trip as an “easter” present, and that I could use the credit card that my dad gave me for gas for any expenses I needed until I got my first paycheck at work.

I jumped on the chance. Seeing everyone from home would be less frequent. Seeing everyone from home would make me feel better about my new adventure. I booked the flight.

On my first night in Vegas I got drunk and decided that playing poker was my best bet to not lose all my money, and figured I had about 500 bucks to lose. I sat for two hands until I looked down and saw two K’s staring up at me. Not to get into a poker story but 3 kings loses to a flush, and I was soon out 200 bucks. I checked the ATM and figured I wouldn’t gamble again, and then realized my geico payment had gone through. I had 0 dollars left.

I went back to the hotel and slept. The next morning I went drinking with my friends. I borrowed a little money, figured I wouldn’t do anything crazy, and then high school and college started for 3 hours in a bar at Planet Hollywood. I drank everything. I rolled down the steps of the bar for money, did chugging contests to win free drinks, and just got a little over the top. After a little it, I followed some friends to a pool party. Everything was looking ok, but after leaving the pool I walked by myself. I remember it being hazy, but I remember thinking if I just take 200-300 bucks out on my dad’s card, I can win it back playing poker (which, aside the previous loss, I’m actually probably a little above average at). Well I didn’t even make it to the poker table. Soon as I got money, I was at a blackjack table with a drink, then more drinks. It gets fuzzy here but at one point I had about $2000 in front of me in chips, and I know I went back to the ATM at one point – This being even worse, considering to get a credit card withdrawl, you basically have to give you ID, thumbprint, and signature, so I was technically committing fraud without using my own card (I have the same name as my father).

Well, as anyone that has gambled really drunk, by themselves, knows, this didn’t end well. I woke up the next morning feeling horrible. I needed to use my friends change to get a taxi to the airport, and I needed to overdraw my credit card to get an Uber back home from SFO (late flight, Bart was closed).

These types of stories were a little more frequent at 22-24, but I had moved past that. Going back to college, taking my loans out, dating and falling in love with someone that I went through a lot with, and just plain growing up had made me a more reliable, mature, and calm person. This stuff wasn’t supposed to happen when I moved to my dream city and was finally realizing my dreams.  I was absolutely devastated, and felt as low as possible as a person.

Through a mix of luck, help from my mother, hustle, and friends in SF, I made it through the next 4-5 months without having to quit. It was close. Closer than anyone but my mother and my friend, Jennifer, know.

Now, 19 months later, after the most productive 2 months of my life, I’m sitting in that same city, hearing a doctor tell me, “not to get too down,” and that “we will need more time to figure out the right medication” and that this could mean I have a more aggressive MS path.

So much of these two months have been about my will to live for real. So much has been about wanting to experience life more. So much has been about the attention, about the acknowledgements that I’m actually doing it.

So much of it was not thinking and just going. Just do healthy stuff, don’t overthink it. So much of this has been about realizing that I’m not going to be able to move on with my life if I don’t address this, but that I can’t think about it because it makes me depressed.

Well, anyone that read my article from last week could see that after climbing the mountain, that depression was creeping in.

I’m not going to lie… it started to go off the rails. I took out money and lost it. I drank shots of whiskey. I cried in a bathroom stall. I paid $40 for my first cigarette in 34 days, because I wanted to punish myself for smoking it.

Worst, I had that thought, that horrible dreary thought that was kept in the back of my head for the last 2 years since my diagnosis. That one that I thought I was fighting off for two months. “You are going to be walking with a cane in 5-10 years so FUCK it, do whatever.”

I didn’t go full off the deep end.

I don’t want to give credit to any source and most of all I don’t want it to go to me.   I tend to shy away from mentioning friends by name on here, because I don’t want to put their stuff out there, but my friend that was with me deserves a lot of it. The thoughts of letting all of the people that supported me the last two months deserve some too. One of my best friends, who I spoke with on the phone immediately after the doctor deserves some as well. The fact that I lost my debit card buying breakfast at the world’s premier hacker conference and had to cancel it immediately deserves credit for making it an easy choice to not get more cash.

But, I made it through the weekend. I drank a bit, hung out in the pool, walked around the conference trying to think about anything other than MS. I danced behind my friends at the blackjack table to 90’s hip hop videos, talked to girls, and ran around town. I didn’t buy a pack of cigarettes, and I didn’t gamble another dollar.

I’m not OK. I’m was actually hoping to be at August 28th when I got the news, because I knew it wasn’t going to be the good kind. It wasn’t the horrible kind, but it was mostly what I thought.

I can feel the fatigue, I can feel my memory weakening, I can feel the tingling more and more. I have been more and more active, and it has led to being more and more tired. Staring at a computer makes me almost fall asleep daily and walking 1-2 miles makes me feel like I climbed that mountain on some days. I know things weren’t going to be, “hey, we messed up, you don’t have MS!!” But, I didn’t want to hear it until I knew I’d be home the next day.

So, I’ve heard it now. I have my appointment at the end of the month to go in, and I need to prepare questions. I need to learn more. I will probably be on Tecfidera a little longer to see if it just hasn’t “kicked in” yet. I will have another MRI in 4-6 months to see where we are.

Looking online I saw that a study showed the amount of flare ups in your first 2 years can show some correlation to years walking without assistance. 1 flare up gave a median of 12-14 years. 2-3 was closer to 6-8. 4 or more was more bleak.

This puts me somewhere in the 2-4 range, because I don’t know when I actually felt good and when I’ve had the effects and when I haven’t. There’s been days where I feel dizzy and “out of it” for a steady 2.5 years. There was harsh vision and hearing effects 3-5 times. My cognitive ability has dropped significantly.

I would usually thrown in some inspirational stuff about how I’m going to keep kicking ass at this point, but I’ll just say this… The blog helped. The fund raiser helped. The messages from you all helped. It got me home from Vegas in one piece.   It’s probably the reason I have money in my bank account, and am not smoking right now.

I’m just left with one question. What outlook do I take? Do I keep with my “I don’t have time to waste not living well” one, or is that more depressing because it may be more true?

Matt

Fear

I’m not OK. I’m not good. I’m not a hero, that gets bad news and rolls right into being an inspiration. That can take things with perspective and look at people that have it worse and not feel bad for themselves. I’m not someone that can just turn off thinking about all the possibilities. I’m not someone who hasn’t dealt with crippling depression before. I’m not someone that can easily separate the bad things that are affecting them, from the ones that feel like they are affecting them. I’m not someone that can handle being in a wheelchair. I’m not someone that can deal with the downward spiral in cognitive ability. I’m not someone that has ever learned to be organized, and that can easily adjust to just not memorizing everything, and things being easy every day. I’m not someone that can look into the face of my own mortality and smile. I’m not someone that can feel ok by myself, even though I realize I have more good friends than anyone should have. I’m not someone that can feel not-guilty when thinking about all the people that care about him. I’m not someone that can let everyone down again.

I am someone that can learn to not give up. I am someone that can learn to feel good about themself and have in many ways.   I am someone that can realize that these thoughts will change rapidly at times. I am someone that understands Stumbling on Happiness, and can realize that my predictor of the future is flawed because of current feelings. I am someone that realizes that I will fall in love again, even with MS, and that it will make me feel better about everything in my life when it happens. I am someone that realizes that I will just get back to a dark place if I make someone else my cause for happiness. I am someone that is ready to admit I’ve never gotten over their ex. That you are both hurt by the fact that you fell that hard for someone who didn’t have your best interests EVER in mind, and that someone you loved did try to hurt you that bad. You are also a person that can look at this person, and not have bad feelings, that can actually hope that they are doing well.   You realize that this is not something many people can say with full honesty. You realize that you let go of any fears and feelings from that relationship in the short time with the last girl, but that you were in no way ready to be in a relationship.   I totally understand that I’m going to freak out routinely for the rest of your life until you come to grips with who you are.

These thoughts are probably all gibberish, and will be something I look back on in weeks / months and don’t even remember. I have spoken about how I had a personal journal before. In that personal journal, so many of the posts were about the aforementioned ex, that when I look back I actually doesn’t even register. My thoughts and emotions that, at the time, felt so real, were in no way lasting or constant.

If I continue on my road, if I keep going in a positive direction, good things will happen. If I continue to make good decisions, and continue to meet new people, I will change everything I believe, because I am not a person that’s stubborn. I am someone who loves, someone who experiences, and someone who is constantly evaluating and overthinking.

I also like these things about myself. In the 2 years since I decided that I was going to look for a new job, and try to move to a new place. I have got the diagnoses that triggered this whole blog. I have moved across the country. I have become single and bounced through many dates without having many that meant something. I have had a few. I have also learned that I can do almost anything I put my mind to. I can make myself feel like shit because I let my mind run, or I can just choose to be happy, and not lose touch with my sense of wonder and adventure, and then I will not be upset. I can be the guy who wears a snow white dress, because it makes people smile, or it drives for that few hundred dollars for a good cause. I can be the one that dances horribly, in a room full of people with rhythm. I can still have fun in this situation. I can have fun in any, really. I will.

I don’t know what tomorrow brings, but who the fuck does? I can type this out in a word doc, with no intents on posting it publicly, and finish the typing, and realize that this is the reason I started the blog. For the nights when you’re 7 hours away from flying to Vegas, where you’re coming home and feeling pretty good, and then the horror from today hits. The horror from when you stupidly clicked on “Dating with MS” on Google.   The horror from when you realized that some of the complications and the stories from people that have gone through it, reminded you of situations you’ve been in. The horror from the realization that the other examples, in the article, could be you in the future. Well, we’re posting it. Because I wanted people to know what you go through. I literally sat down to write about what MS is and what it means to me, but I was feeling so crappy, that I had to write this.

I feel better now, and I don’t need the old “stick through it, Matt” comments. I appreciate them. I am never stopping fighting, and I am never going to give up. I have 3 sisters, too many friends, and the best family that I will never give up on.

The ex told me that no one would love me with MS, and I don’t care if she even sees this. That feeling is bullshit, because as soon as Matt Walker starts loving Matt Walker, he will see that way too many people already love him. 

-Matt

Climbing Mountains

I wanted to write something to sum up my emotional weekend earlier.  For the first time since I started this blog, I haven’t been able to write.  I’m proud.  I’m feeling really really good about myself and my mission.  I’m feeling really really good about what my friends got together to achieve. 

I just don’t know how I feel about everything.  I have lost around 45 lbs since I started this journey.  I feel a lot better overall.  I made it through a weekend of celebrations without cigarettes. 

I know that I need to start to focus on the next mission.  I know that I need to keep the drive from Mt. Tam. 

I also realized something internally.  I’m upset about things in my life.  I’m scared about others.  But, for the first time ever, I’m happy while struggling with these things. 

I spent my whole weekend with great friends.  I honestly was happier than I can remember being on Sunday.  I woke up Monday to that same sick feeling.  I almost threw up today walking in to my MRI meeting.  This sounds bad, but as I said before, I’m not overwhelmed totally. 

I go to Las Vegas for Blackhat-Defcon after tomorrow, and i can focus on that.  I also need to get back to focusing on my life in a smaller scale.  Work, friends, exercise, and relationships.  That’s the focus.  

For the last 2 months I’ve been blessed to have understanding people around me, as I had to make so much about me.  

It’s time to keep the personal focus, but to expand outwardly.  I’ve heard from a bunch of people that this stuff has helped them.  That honestly touches me.  I want to extend that help outwardly. 

My number is 609-240-1465, and my email is mvw110@gmail.com. 

if you’d like to chat, if you’re feeling bad.  If you’re just curious how I am, call or text. 

I plan on buckling down and focusing on my work and my health.  A little less dealing with my feelings.  A little less dealing with dating.  A little less dealing with the future. 

It’s time to get back to being me, while keeping all of my new found confidence, will power, and drive.  It’s time to apply that to other parts of my life. 

There’s nothing I can do for the next 24 days to deal with my prognosis.  That’s when I hear what the MRI looked like.  So we’ll spend those days getting through life.  I have had a lot of people ask me about what my MS means.  I will post after I get back from Vegas about what I know, and about what I can find out through my research. 

After climbling the mountain on Saturday, I was at the beach in Alameda on Sunday.  I felt like swimming.  I ended up in the Bay.  I was truly happy, with no worries.  I plan on being in that spot more often. 

Thank you for all of my friends and family who donated.  Thank you for the people that joined me on my journey.  Thank you for those that continue to listen to me.  I honestly, can’t thank you all enough… it’s impossible to say it as loudly as I want to.

Tomorrow, I am going to head over to the Northern California MS Society HQ in SF.  I will drop off a check for 2146 dollars. 

That’s an accomplishment, that’s something that makes me feel like I’m free in the bay. 

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#MountingMS

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I’m obviously going to post more later.  I have my MRI in 1 hour.  All of you are with me. 

Thanks for making this weekend the greatest of my life.

– Matt