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: June, 2015

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.

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.