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.

Category: Uncategorized

1 Year In

Muckfest MS: after

Muckfest MS: After

What have I learned in 1 year?  Let’s see….

My life started 1 year ago today.  My new life, or so to speak; my life of trying to figure out who I really am, and trying to fight MS heads on. Funny, thing is, it looks a lot like my old life in my tinted view right now.

A year ago I was reeling and alone.  Although I had tons of friends, I was in a place where I didn’t know what to do.  I talked to my friend, Jennifer, and expressed my intention to write a blog and to start to take control of myself.   I wanted to get it out there publicly and see what happens.  I wanted to truly start my journey.

I wrote out what I wanted to say, sent it to Jenn, my sister Taylor, and a few of my best friends in my life.  I made a video on Youtube to post simultaneously, at the request of my friend,  Steve Gerben, who talked me up with confidence to be able to do it.

I was scared no one would like it, and that no one would read it, and more so, that no one would take me seriously.  On June 25th,  I posted the blog, and went to the bar with Jenn to have a drink and calm myself down.  I went home early and went to sleep with 2 likes on the Facebook post and a nervous feeling of “what did I just do.”

The next day I got about 150-200 messages.  It was overwhelming, reassuring, and awe inspiring all at once.  The blog and my challenges became my life, and the summer of  ’14 became all about that.  I fell behind a little bit of work, sort of righted myself for a bit, and struggled to find the balance I was looking for.

I’ve made so many friends; I’ve made so many strides at work.  I’ve actually taken medication for MS and went to the doctor’s routinely.

I, also, am still the same person I’ve always been.  I still have issues, I still have the same fears, and I still have the same douche mentality that posts 9 million things online.  I still love attention, and I still love just going with the flow and having non-stop fun.  I still feel out of shape, I still feel like I didn’t deal with my MS, and I still feel like I can always do more, even though I’m tired as hell.

I’ve gone through things that I will never experience again, and I’ve done things that I’ve never done before.  I’ve walked 2 5k’s and “ran” a 5k mud run in October.  I’ve climbed a mountain I couldn’t in 2013.  I’ve held fundraisers.  I’ve done dumb things.  I’ve done healthy things.  I’ve traveled more than I ever have.

I’ve become more cynical, all the while looking for a sort of boundless optimism.

I’ve grown up mentally, and understand what anxiety feels like, when you think it’s justified (as opposed to before when I hated myself for feeling this way, because everything was “great” and I was unjustified to feel bad).

But, in reality, I’ve gone up, up, up, down, down, up, down, up, DOWN, UP, down over and over again.  I’ve done some good, and those that know me, know that I’ve done some bad.

I’ve been away from family and home for a while, and I’m still here, still kicking and still fighting.  I’ve fallen for people, got over it, fallen again.  I’ve ignored friends that I shouldn’t, all in the name of being busy.  I’ve had some people that I thought would be fixtures in my life, leave, and I’ve had some people that I didn’t know become new fixtures.  I’ve realized that some are going to come and go, but an inordinate amount of friends I have will always be there.

I’ve been to the hospital about 10 times in a year, spending 12 agonizing days in the Alameda hospital in November.  I’ve lost money gambling that I shouldn’t, I’ve made decisions to not gamble that I’ve never made before.

I’ve quit smoking and started smoking about 35 times.  Only 2 times significantly.

I’ve read my first 10 books in over 2 years.  Just saying that sounds insane for me, and embarrassing.   I’ve come to accept that I’m not 20 anymore, although, I wouldn’t say I have accepted it and moved on.

I’m at a point where I don’t regret some of the things that I’ve talked about on here internally any more.     I don’t regret my past; I just judge why I can be so fucked up in the present at times.

I’ve tried therapy; I’ve talked the ears off of friends.  I’ve learned to be there, truly for some friends, and I’ve learned when to stop just looking for everyone to be there for you, as you need to give something to be someone’s friend.

I’ve given up on any form of online dating working, and decided I’m living in real life.  I’ve decided it’s not a game and it’s not a fixture in my life.  Anti-social people need to gear up for meeting women, social ones can just go make friends and see what happens.  When I’m at my best, I’m the latter, Tinder, and all that bullshit, makes me the former.   I’ve learned how long someone can stay with your thoughts, no matter how much you have moved on, after spending years with them.

I’ve joined a gym, went a few times, and then basically have a membership that acts like a subscription service I don’t use, a once a month charge on my credit card that sits there staring at me.  I’ve planned to go back.  I am this week as long as the ankle holds up.

I’ve paid back every human being that I owed money to, albeit with some leniency from my parents for my early 20’s.  I’ve missed payments because I don’t check my mail, and I’ve paid more fees than any human being should.  I am horrible at paperwork (or just lazy) and I am getting that stuff straightened out.  Maybe I’ll hire an assistant.  Just kidding.

I’ve come to love NorCal, and I’ve experienced more of the bay and the surrounding areas.  I’ve come to appreciate that we live in such an awesome place, while learning to truly miss New Jersey.  I’ll say that again, I truly miss New Jersey.

I’ve travelled, and know that I want to do that more.  I want to live somewhere new, if I ever leave here.  Having the professional ability to choose wherever I want to go, and feeling 100% happy where I am is one of the best feelings I’ve ever had.  I want to take chances, but healthy ones.

I’ve learned more about myself as a person, than I ever have; yet I still have no control over myself at times.  I’ve learned that I can scare the shit out of myself when I let my mind roam.

I’ve learned that you can do a lot of good, and will if you try.  I’ve learned that you can do a lot of bad, and you will if you let yourself.  I’ve learned that who you are as a person, can’t be defined by your weakest and worst moments, just as it can’t be defined by your best and strongest.  I’ve also learned that you have a way better chance of establishing others’ lasting views with a few of the weakest than with many of the strongest.

I’ve learned that I don’t want to post this blog any more on Facebook and Twitter, looking for likes, comments, and attention any more.  I feel better when I write consistently, but I feel worse about myself when I think about who’s reading it.

I wish I did more of this in the last year, and I wish I posted more frequently.   But, I’m going to stop putting things up publically to everyone I know, to stop trying to reach that 1 to 10 people I’m thinking about when I write, almost subconsciously.   I may keep the WordPress site going; even if literally 5 people read every one I write.   I may just keep a journal. I may try to write stories.  I may do none of these things.  I may write emails for work and go home and not read or write anything.

I will continue to succeed at work, while making myself healthier, and happier, and I may start to be able to make friends and start new relationships healthily and from a good place.

I have not learned enough yet, and I may keep making mistakes in these areas and only going crazy over things I can’t change.   I may keep friends around me that take and take, and feed into my own demons, and I may invite old ones back into my life from before.   I may take too much from those that care about me, unintentionally.

Anything is possible.  It’s all on the table.  I know that this blog and Facebook became what most everyone from home knows about me, and it was almost a running story of what I was doing out in California.

In all honesty, its not close to covering that, and I’m going to use writing to get my feelings and thoughts out, not to make myself feel better, or make myself feel like I’m impressing people.

I’m going to continue to laugh, to smile, to say sarcastic shit, to bitch about traffic and the way Californians drive, to wish I could get good hoagies and pizza, to enjoy the food I’ve never tried before, and to meet new people.  I’m going to keep having fun, and I’m going to probably keep being annoying at times, and a little bit of a attention whore.  But, overall, I’m going to keep trying to find my life, and what I want, no matter what I have to do.  Thank you for everything, that anyone I know, has given me this year.  I appreciate it more than you all know.

Be kind, be caring, have fun.  Simple and efficient.   Don’t stop looking for greatness, and don’t accept sadness.  Experience it and learn.   Happiness is really all that matters.   If you don’t like something, change it.  Never stop growing, and never stop learning.

“Hey, hey, hey.  A life.  A LIFE, Jimmy.  You know what that is?  It’s the shit that happens while you’re waiting for the moments that never come.”

Lester Freamon, The Wire.

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Back At It.

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As I wait to board my flight back to San Francisco I got the itch. The itch to jot something down. To jump back into telling a story, the story of me. The story of who I want to be, and who I feel like I am.

I stopped writing at the end of last year because of many reasons, but aside from not having time around travel, work, and losing my mind then regaining it, there were two main reasons.  One, the pressure of putting so much of my personal life out there was getting to me. Two, I wasn’t being totally honest with everyone.

I didn’t want people to worry about me, and I didn’t want family and friends to know that things were really fucking depressing at times, or that I was doing wreckless shit to avoid worrying about it all the time. Or that I made a huge mistake staying in SF for the holidays and was on the brink of losing my mind at all times.

I didn’t want to tell anyone about it, and I was hating myself for pandering to make people feel better when I wrote the few times I did in the end of last year.

In the summer of 2014, it was easy to write. It wasn’t easy to live, but it was easy to write, because I was doing everything I can to go over the top to be healthier, and to beat back MS and all my other demons every day.

You want the honest part? I hated it. I hated not doing things that I wanted to do, when I had free time to do it. I hated living every day in my own head, and I hated using every waking moment to walk, or write to just quiet the screaming inside my brain.

It’s a weird feeling to explain; when you actively wonder to yourself if you are insane.   When you take apart every idea that is thrown at you, because you have taught yourself to apply critical thinking, but it ends up with you wondering if anyone else lives inside his or her head like you do. I’m sure some of you will understand, and it may be more than I know, but after my last 3 years of life and self exploration, I ‘m not sure whether I’m just like everyone else, or completely different when it comes down to the things I internalize. I basically don’t know if most people have the internal conflicts and communications, as I do constantly.

I know I’m sane, I know that I care, deeply, about others at times, and that I sort of hate that moving to SF has killed a little of that part of me off, and that I’ve become a more selfish person from my diagnoses and from shooting for the stars with my goals in my career and seeing that pay off. I know that I never want to hurt others and I know that I want other people to like me, to a fault.

I also know that I have it in me to hurt the ones that care about me most, through my own actions that I see only as affecting me.   I know that I don’t think about circumstances in the moment and love to just live life on a whim. I know that I think different and don’t usually take hard sides on an argument, leaving room to be convinced of something I haven’t thought of. Well, unless it’s something huge like LeBron vs Kobe (Witness, baby).

I know that I don’t care about the things that I used to care deepy about. I still love watching sports, and I still love arguing politics but I’m more about picking apart daily life and arguing over ways that we could be better as a society and as a people.

I don’t intend this blog post to be all about me, so this seems like a good time to talk about something I’ve noticed in myself and in friends and acquaintances.   We’ve lost the ability to truly care about others to a small extent.   Now, to be clear, I feel like society is fine, better than ever even. We are kinder to each other and more and more of the world is at peace as time moves on.   News travels fast, so we see all the horrible things that happen quicker, but in reality the % of problems is getting lower and lower.

But, how about just being nice to each other, and caring for the ones that need it. My big realization came to me while venting about friends that I have and about colleagues and people that I meet at work.

Even though these instances are about people that I care about, and actually like, I was still complaining a bit to make myself feel better about me.   When I have a weekend bender I look at my friend that’s still partying on Sunday and talk about them like I’m doing better. When I see someone miss something at work or leave out details I bitch about it to someone to make me feel better for my own laziness at work.

Why do we do this? Why do we feign care, and sling judgment to others when we really should do the uncomfortable thing, reach out, and try to make those that know us better?

Probably, because life is fucking hard. It’s not easy to go through death, heartbreak, sickness, and failures without looking around to realize that you’re still ok. It’s not easy to care about people that are not in the interest of helping themselves without judging them. It’s not easy to live life in the moment without judging every situation so that we can make better informed decisions. While that seems like a productive strategy, I’ve found that it can make you cold and overly critical.

I’m going to try and apply this all to my life starting now.   I’m about as happy as I’ve ever been, and I know I’ve said this before, and I usually meant it, only to find out wasn’t totally true when one thing turned. To guard against this I’ve thought about things like “what if I lost my job” or “what if I went through another breakup with someone I really like?”

Gasp, even the big one: “What if my health took a turn?”   “What if I woke up and couldn’t see or walk the same one day this year?”

How in the hell would I deal with this? I don’t know. I don’t truly know if I’m dealing with anything in my life. I know I’m trying. I’m trying to figure out what I want in my life for future goals. I’m coming to grip with the idea that I’m actually as successful as I imagined back in high school, when I was a cocky kid that could test well, never had to try, thought life was magical and easy to figure out; but really didn’t know shit.   I know what I want in dating, and in relationships.

I know what I want from my friends, and that I what I want in my health is something I can control. I don’t want to never drink any alcohol, but I do want to never smoke cigarettes or do any drugs. I want to cut back and to be honest, I don’t even enjoy drinking for the sake of it, I enjoy having fun. This winter was a lot of weekends just spent doing dumb shit, and not being social, I know that I don’t want that.

I know that I want to exercise again. Until I hurt my back and the ankle got sore, I was hitting the bike at the gym and just that felt good. I want to get back to golfing once or twice a week, and to eating healthier.

Fuck kale, and you all can stop lying to yourself by saying it’s good. Lettuce is better. But I don’t want to eat bar food and fast food ever. You just feel like shit the next day and it’s not worth it. I can cook like a champ and I hadn’t made myself a meal in 2015 until about a month ago. Animals taste delicious, so I’m never going to be a vegan or anything like that, but fried crap and non-lean meats need to go.

I want to write more again. This helps. This is entertaining for me, and it’s a way for me to get my message out there. When I started writing I loved hearing that it helped people going through other diseases that read it. Then I started to pander and use this to make myself feel better. I don’t want that. I want to get back to just telling my story. Because I do like the idea of someone coming across this after being diagnosed and realizing that they aren’t alone. That they aren’t the only one that has a little part of them that hates people for being healthy. That they aren’t the only ones to actively think to themselves and ask, “Could you kill yourself if this gets worse?” That they aren’t insane to think, “no, too many people care about me, and I’m too big of a pansy to do it.” That they will have times when they don’t care about their health because who cares, MS will start to affect me later. EVEN THOUGH MEDICAL SCIENCE IS SCREAMING at them to be healthy because a cure is on the way.

I don’t usually name people on here, but a good friend of mine had a health scare last week. He was told he could have leukemia.  At my age we’re starting to see more and more people that have had to hear that horrible news. You know what I’m talking about. A scare for you, a death for a friend, or family member, a sickness in someone you love.   Once, you’ve truly dealt with that pain, and that fear, you get a bit better at being there for friends in the same situation. In an instant you have talks that people that don’t know, don’t have.

After the tests came back he didn’t have anything too serious, and I internally went from “worried out of my mind and empathetic” to “jealous and alone again as the one that has something wrong with them.”

I told him instantly and we laughed because we have horrible senses of humor, but then I started to feel really bad about it.

This prompted me to start to think about writing again. To start to deal with my health again, so the people I love and want to be with all my life, don’t have to worry and don’t get hurt 20 years down the line when I keep doing harm to my body. This thought prompted me to plead on here for people to stop arguing over everything all the time, and find common ground on issues so that we can learn and care for each other. It prompted me to just want to ask others to be kind, and to strive to make others around you better, because one day, you will need someone there to help you do the same, and hopefully you will have been great enough to have a few people there to pick up the slack for you.

Muck It Up

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I’m laying in bed at 10pm for the first time on my birthday since I was in my teens at least.   I’m waking up bright and early to pick up some coworkers and drive to Vallejo, CA to “run” in the MS Muckfest at 9am.

My company, RockIT Recruiting, is joining me for the 5k and jumps through mud.   I am scared that I’ll hurt myself, and that I’ll disappoint myself. I didn’t train nearly enough, and I’m not in running shape. The doctor said to be careful when I’m running and to probably not do it too much, but I’ll be fine. I wanted to buy a bike and join a gym when I got back to California, but that just didn’t happen.

I regret that I didn’t keep going balls to the wall with my health, but I’m not feeling too bad about it. I have had a great time being back here. I love my friends, I love my job, and I love my life.   I usually try to respond to all of the birthday messages I receive, and I will when I have time. But, today I literally got too many messages to count.

I am excited to do something that is going to be hard for me tomorrow, and I’m happy that I’ll be surrounded by the great people I work with every day. There’s not many people who can wake up, go to work, and be excited to be surrounded by literally all of their co-workers every day. I know it’s rare and I don’t take it for granted. I don’t know how I can possibly thank them all tomorrow for waking up at 7am to dive in mud puddles and run with me to support MS.

So, here I am. I haven’t written much on here in a while, and being honest, I’ve tried. Nothing has come to me. Nothing feels worthy to take up any of the people’s time that read it.

At this point, I have to just be thankful for the people that care about me. Since I’m not going out on my birthday, I celebrated last night with some close friends and tomorrow I’ll be in North Beach with almost everyone I know out here for Fleet Week after my race. But, I’m just happy. It’s hard to believe that I have this many friends from my less than two years out here, and that so many people from my past still care.

For my birthday I’m going to buy myself that bike next week or the week after. I’m going to stick to my mantra from before, and keep trying new things, and keep trying to live more in the now than I have. I am going to stop feeling guilty for everything and start experiencing more. I’m going to keep going for what I want in life and stop worrying about how I get there.

I’m going to get back to writing on here a little more, and I’m going to keep reading and exercising (things I didn’t do for the last 3-5 years).

Just this weekend I’m going to get to run in the Muckfest, watch an air show from one of the best views in SF, tour aircraft carriers and ships, and just be in San Francisco.   There’s so much opportunity for me to do great things out here, and there’s so much excitement around me, and I’m just going to grab it.

Around 2 years ago, I was moving home to Lambertville, to live at home and save money to move somewhere cool. I just had my first neurologist tell me that I probably had MS, and I was starting additional testing at UPenn.   I remember having dinner with my family for my birthday and going to a
Yankees game with the ex at Camden Yard, in Baltimore. I was getting my resume together and I was starting to apply to new companies.

If you asked me what the next two years would entail, I couldn’t possibly think of a scenario where I would be where I am now.   I wish some things had gone differently, and I wish I had a smoother ride to get here, but I can’t possibly thing about how I would change any of it.

Tomorrow I’ll try not to die diving through mud puddles, it will be cold, tiring, and I will probably wish I was more prepared for this, but I am so happy I’m doing it.

Thank you to everyone who has reached out to me over the last few months, thank you to everyone who is in my life out here, and was in my life in Lambertville, State College, and Philadelphia, thank you to everyone that read this blog. I may not be out partying tonight, but this may be the happiest birthday I can remember, I love you all.

Stuck…

Since I came home from New Jersey I haven’t written anything or even attempted.  Usually, things just come to me.  A lot of them came out of darkness, a lot of them came out of inspiration.

I’ve found it hard to find either lately.

I don’t know what this means.  I think it has something to do with how long this is.  It’s not an issue where I just get over it, and things are great.  And, it’s not a situation where if I don’t change immediately, the circumstances will be horrific immediately.

I’m stuck waiting.  I’m stuck trying to figure out life.  I thought that if I just got an idea to be better, than things would just follow.   I can do some exercises; I still have the same issues I always did.  I can change my habits; I still have the same vices.  I can change my outlook; I still have the same fears.

Coming home was the best trip back I’ve ever had.   I wished for more time with my friends and family, while at the same time being excited to get back to my life in California.  I was ready to leave when I traveled to the airport, but extremely sad saying goodbye to everyone before I left.

Then I got back here.

Being back means that I have to keep going with life, that I have to move forward.  I haven’t been great since I’ve gotten home, and I haven’t been bad either.

I’m focused at work more, and I’m still not being entirely unhealthy.  I’m not depressed, and I’m not anxious at all times, but I’m not excited or enthralled either.

That’s the problem with a disease that doesn’t end your life, and is still scary.  I feel as though I need to be an entirely different person to get by it, but I also don’t feel the urgency that I need.

I’ve been hit with some good old fashioned perspective recently, and it doesn’t really do anything.  My entire apartment building almost burned down, and I watched as my neighbors left their water and smoked damaged apartments.  I only lost electricity and hot water for a bit.

I have heard more and more stories of people diagnosed with MS that have had it more sudden and more aggressive than I seem to have.  I have seen other people with diseases that are way more dangerous and extreme.

I can’t bring myself to feel sorry for myself, or to feel confident that I have this under control.

I’m stuck in the middle, and I don’t know what that means.  I have a ton of great things going in my life.  I know this.  I am confident more than I have been in 4 months, and I still feel like I’m not in control of myself at all times.

I know that the inspiring conversations bring more comments and more support, and I feel like I shouldn’t just write on this blog to bitch and whine.  I don’t know what I should do though, because I feel like I need to write something.

I wanted to be honest on here, and I wanted to make this a story of my progression through everything.  What do I do when I am not totally progressing (or regressing)?

I have to set goals, and I have to get the engine moving forward before it goes backward.  Stagnation has never been good for me.  Sitting still has never been something I’m ok with.

Falling into patterns feels good when they are healthy, but I’ve always started to get bored then turn them unhealthy.

I’ve figured out how to get control of my emotional state.  I’ve figured out how to keep myself from swinging wildly.  I just now have to figure out how to just let myself be happy.

I deserve it, and I know what I need to do it.  I’ve written about guilt on here before, and I know that’s still something I need to get over.  Pride and guilt really don’t do anything productive for anyone.  They’re just remnants of the past that keep us content or push us lower.

It all really comes down to what do I want?

What do I want in my life?

I want to experience new things – too general

I want to travel – too general

I want to have a great time – too general

I want to have success – too general

All of these things aren’t real.  I have to just figure out exact things I want, and I have to set up a path to get to them.

When I was 25, I wanted to get married and have kids.  I’ve been 100% against both of those things for the past 7 years.  When I finished going back to Penn State, I wanted to move to California.  Well, I did that.  A few years ago, I wanted to think about grad school.  Now, I don’t have any interest in that.

I know I do want to travel.  I know I do want to meet tons of new people.  I know I do want to experience new things.  I know I do enjoy my life out here.  I know I need to find a way to fully embrace the now, while not just saying, “fuck it.”

I am going to stop planning things in my head for no reason.  I’m going to stop wondering why things happen the way they do, or what other people are thinking.  I’m going to have to stop over thinking every part of my life.  I’m just going to have a little fun.   I’m just going to focus at work.  I’m just going to talk to more people.   I’m just going to keep saying yes to new experiences.

Hopefully I have something to write about sometime soon.

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

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

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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