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: coping with disease

Do something.

MS sucks, plain and simple. It magnifies things that never bothered you. It makes you doubt everything you’ve ever thought. It makes you take risks, avoid challenges, run from real connections and people you care about and makes you overly emotional over things that may not have even made you flinch before.

Yesterday my left arm didn’t work from the elbow down. A few weeks ago my right leg felt asleep all day and then my ankle hurt for 3 days afterward for no reason. Today I stopped hearing out of my left ear for a while. I can’t catch keys when someone throws them to me. I get dizzy and feel like I’m going to fall over naked and scare the shit out of my roommate every time I step in the shower.

A few months ago, in Europe, I felt like I tore my Achilles tendon, and had to cut my vacation to go to the emergency room in Germany.   I was scared that I would be in surgery and within two days I was walking normally again. I didn’t have any other major issues the next ten days in Europe, but I did own a set of crutches that hopefully someone can use in Germany or Amsterdam at some point.

Reading makes me fall asleep. Looking at a computer screen gives me a headache. Sitting for a long time makes my legs fall asleep. Good thing I’m a recruiter that has to be on a computer for at least half the day.

Everyone has trouble getting out of bed. Getting out of bed is normally not a fun thing to do. But, I have to grab the wall next to my bed and pull myself out of it to steady myself as I stand. My legs and arms feel like jelly for about 20 minutes to an hour every morning. Sometimes the joints ache, sometimes my nerves shoot pain up and down my arms and legs.

Every once in a while I feel like my lower ribs and back muscles are caught in a vice grip. To call this the “MS hug” is a cruel irony, because it feels like being grabbed by a heavyweight wrestler trying to crush the breath out of you.

Cognitively I can’t look at a phone number and remember it 10 seconds later. I’m a person who memorized every stat of Don Mattingly’s baseball career at the age of 8 off just looking at his baseball cards for a few minutes.   I forget everyone’s name, and call girls I date a meaningful ex’s name here and then. I’m a recruiter, I remember people for a living. A day with 5-10 tasks is a mess. Just planning out how I will attack them, and remembering what I need to do is exhausting.

Emotionally I’m a wreck. I fluctuate from thankful that this disease made me take chances and make the biggest move of my life to California, to full of dread thinking that I won’t ever have a future that I care about.

Alcohol helps the pain. It helps make things fun. But, then you drink too much; to add a hangover after every weekend on top of the normal things is to start off a week staring at exhaustion.

I love people.   I love being in pubic and living in cities. But I can’t hear in crowds. Being around more than 2-3 people in a conversation is exhausting yet again.

I wonder if every girl I date is someone I want to spend a long time with, as to not waste time that could be spent elsewhere. As soon as I start to really like someone, I start to wonder if I’d even want to burden her with my future.

This leads to meaningless hook ups. It leads to me being that person that doesn’t call people back at times. It leads to me over valuing any relationship I care about and not being able to have that “just fun” period that every romantic relationship deserves.

Money doesn’t matter, because what’s a bad decision at this point? I look at the money going into my 401k, and think about the trips I could take with that right now. I think the only reason I do invest anything is to placate my image that I show to my true friends.

No one understands. Not even me.  There is no finality. There is no plan. There is nothing but guilt when you feel good. When you act like a jackass, you don’t just feel bad for hurting the people that care about you, but you feel guilty because there are some people that were 100% responsible after they were diagnosed, and they’re in wheelchairs.

I don’t know if I’m a good person anymore because it’s who I am, or because it helps me get people to like me. When bad things happen to other people it can roll right by you with no effect, and I don’t have the empathy I once did. Caring what everyone thinks about me has always been a problem in my life, but now it’s becoming the opposite. A chronic disease diagnosis will change the lens through which you live life.

And still, I don’t have it that bad. Not even close. My MS is steady. It doesn’t get much worse from day to day. I feel good sometimes. I felt pretty great when I was super healthy last year to kick off 2016.

Getting involved and interacting with other people with MS is a painful struggle. I can’t see it. It overwhelms me with guilt. You have guilt, for bitching about anything, when you see how much worse it is for others.

But, overall, a lot of this guilt is magnified by the look on someone’s face and the tone of their voice when you comment on how you feel.   People don’t know how to understand or how to react to chronic diseases. They look at you with either disbelief, because you look fine, or judgment, because they know that you’re not being healthy. They talk with sadness in their voice, because they feel bad for you, or they sometimes speak with a dread, because they have their own shit to deal with, and no one wants to hear a sob story.

Then you realize that me avoiding others with MS, especially the ones worse off than myself, makes me this last group.   I’m the one that can’t understand their situation. I’m the one that’s not listening, that’s not able to act normal around them.

I avoid talking to family because I like the image of me doing perfectly, traveling around the world, living this extremely exciting life that I’ve put together for myself.   I don’t want to brag about this life. I don’t want to downplay it and let them know that the reason you do it with no regrets is because you don’t know how long you’ll be able to do it. That you, honestly, don’t think you’ll ever meet another person that makes you feel that you would want to spend decades with them in your life, and that even if you did, you know that the same fear, the same lack of confidence in your own future may very well doom that relationship too.

This isn’t a sob story. I will fully admit it’s aimed at gathering some sympathy, but not for me. I’ve lived the best four years of my life since the day I was diagnosed with MS. And that is NOT hyperbole or something I’m saying to make myself feel better. The sympathy I want is for other people. Don’t assume you know what anyone is going through. Don’t judge others off of your snap assessments. Talk to people. Listen when people complain, and try to have empathy for their situation. Most importantly, if you are in a good situation, help out others any way you can.

Donate time, donate things you own, donate money. Be the person a few people can count on. Be the person that cares about the well-being of people you barely know. Be the change in the areas that you think need it.

In less than 3 weeks, I will be holding my annual fundraiser.   This year we’re raising funds for cancer and for MS. Cancer is something that has affected my friends and family more than any other disease. MS is the single most influential thing in my life.

I can’t help the loved ones you’ve all lost, or I’ve lost. And, I don’t care about helping myself. I’m fine. I do this to help everyone else. I do this to make one mother, daughter, father, friend, or grandchildren have more time with their family member as we improve cancer care.   I do this because I want to have one person that struggles to get by each day, but sticks with physical therapy finally hear the news that the doctors can reverse the effects of MS. Yes, I do this to feel better about myself a little bit, but I’m doing this and will continue because this makes me feel alive.

If you’re near SF, please come to my fundraiser and have a great time. Come to the MS Walk with me. In October, come do Muckfest with me, I promise it’s fun as hell. If you’re elsewhere, donate to something. A few dollars, whatever you can give, would go a long, long way. Find events near you, and go help out. But most importantly, do what I’m doing, and fight to not lose your humanity. Fight to keep seeing the beauty in the darkness, to keep feeling alive at both ends of the spectrum. Keep caring, keep listening, and keep trying to make one person’s life better each day of yours.

Fundraiser Event: https://www.facebook.com/events/216171922193119/

MS Donation Page: http://main.nationalmssociety.org/goto/MattWalker

Cancer Donation Page: https://www.crowdrise.com/f-cancer-lets-beat-it

Thank you, all.  I appreciate everything more than I can express.

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4 years in, 2017

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“One new, active lesion.”

Those words stung more than I thought they would, more than they probably should.  I felt that sick feeling, that I haven’t felt in about 4 years, since I was first diagnosed with MS, deep in my stomach.

I don’t know why this hit so hard.  I have had 2 fairly obvious MS episodes in the last 2 months, and I knew that I had stopped taking Tecfidera in February and not started back up until October.  I knew that MS wasn’t going to go away, and that it will probably get worse over the rest of my life.  I knew that I was and am lucky, and don’t have an extremely severe case of this horrible disease.   I was expecting worse news yesterday, to be honest, and if you had told me going in that I would hear what I heard from my doctor, I probably would have been happy with that news.

But, for some reason, I left the UCSF MS Clinic, drove straight home, skipping my work happy hour that I could have attended, and sat numb on my couch for a bit.

Today, I woke up feeling pretty shitty, almost similar to how I felt a few months ago, when one of the most meaningful, yet sporadic, relationships of my life came to an official end. I felt like there wasn’t hope, and that I didn’t want to get out of bed.  My aches were magnified, my fatigue apparent at 7am, even though I fell asleep before 10PM last night.  The hope I’d talked myself into for 2017, based around my job, and my plans for my personal life was gone.

I think the problem with chronic illness, that I haven’t figured out how to deal with, is the loss of hope.  The idea that bad times are coming, and you have to be mentally prepared to never feel great again is always in the back of your head.  When times are going well, or when I drum up motivation, I can stare MS down and tell it to “fuck off” easily.  “I’m going to beat you, and I’m living an awesome life despite you,” I say when I think about this stupid disease.

When times go bad, when you go through a breakup, when work sucks, when you have money issues, this changes rapidly.  MS is the monster at the end of every tunnel.  It’s the thing in the back of my head terrifying me, when I meet a girl that I start to like.  It’s the thing pushing me to say ‘fuck it’ and do something stupid.  It’s the thing that creeps into every decision I think about for what I want in the future.

Do I want kids?  The answer was always no, but in the last two years I did.  Now, I’m not sure if that was situational. Would you want to parent in a wheelchair?  Do I want to live in another country for a bit?  Yes, but what about healthcare?  How does that work?  Do I want to travel as much as I am?  Yes, because for how long can I do it in the future?  Do I save money?  Yes, because you’ll need it, but maybe not, because what if this goes bad?  Do I want to quit smoking?  Definitely, because this will go horrible if I don’t, but…. why care?

It bleeds into relationships, making me passive and afraid with any women I end up liking, afraid to ruin my ‘last chance.’   With friends, you find yourself wanting to be around people that don’t let you wallow, or feel bad for yourself.  That is until you start to feel bad for yourself, and then you get mad at people that don’t understand, that push you when you need to  just give up for a bit.

It bleeds into your own self worth.  You wonder why you are so lazy and you wonder if all of this is in your brain.  You wonder if you are taking advantage of the disease when you feel tired and back out of doing something you should be doing.   You look in the mirror and wonder if you’ll ever get to live the life you dreamed of, whatever that may end up being.  When you’re a practical person, who lives and unpractical life, you can easily look at the odds of what your future may end up being, and it’s not a bright and cheery image.

So when I was sitting the doctor’s office, I wasn’t thinking, “You stopped medication, you gave up the healthy lifestyle from the first few months of the year, and you quit trying to fight MS, and went back into denial.  These MRI results are actually really uplifting.  The doctor said my brain size isn’t shrinking, which is a sign of the more rapid/chronic MS progression.  This is the wake up call you need, without having it be as horrible as it can be.”

I was thinking, “You idiot, you just made this worse, again.  Wait, the doctor said ‘yet’ when he was talking about my lack of chronic damage or brain shrinkage, does that mean it’s definitely coming?  He just said you have a lot of damage, and that’s not going away.  Did I create most of that when I took a year to get diagnosed, and then another year to get on medication?  Stop this, you asshole, you just went 3 years not taking this absolutely seriously and are still walking and in relatively good shape.  Balance, vision, hearing issues that you have are nothing compared to some other people that DID EVERYTHING RIGHT after their diagnosis, you don’t deserve to be OK.”

2016 was a shitty year if you look at it with the mentality of the person that sat in the doctor’s office yesterday.

2016 was a fantastic year if you look at it with clear eyes and the positive attitude that I need to hold on to.

2017 will be a horrible year, if I am that person that drove home and sat silently on my couch last night.

2017 can be another amazing year, if I just experience it and let it happen.

You’re a happy person, you love life.  Go do it.  Fuck MS, but love MW.  That’s the goal for the new year.  No bullshit resolutions, no bullshit talks about hoping I can do something.  My life is pretty great, it should be even better.  The thing holding it back from being  exceptional isn’t MS, some woman, or anything else.  It is, and always has been Matt Walker.  It’s time to realize how to care about him.

 

Up (to where, from where?)

The last few times I’ve found myself staring at my macbook, wanted to write, or more likely, needing to write, I’ve been in a pretty dark place.  2016 was supposed to be THE year.  The year that I finally had it.  That elusive idea of contentment, or overall happiness.

I came into the new year looking at the prospects of health that I actually wanted, building a relationship with a woman that I actually could see a future with, contributing at a job that I loved day in and day out, all while living in a city that felt like my place.  Travel was on the horizon, my career looked like, just that, a career.

A breakup, some down times at work.  Then stumbles.  Then darkness.  Then fear.  Then lost.

Then a few months of scrambling.  Sprinting mentally from worry to plan, from plan to feeling, from self judgement to understanding that would leave before you could acknowledge the certainty of your thoughts.  Physical scrambling as well; moving from place to place, and traveling without regard.  Just trying to experience new and exciting because it was the only way you could feel positive.

The same travel that was exciting in January, became a necessity in the Spring.  The experiences were in no way tainted, if anything, my lack of worry or fear for any sort of future lead to experiencing everything I could.

But the running wasn’t just a cheap metaphor, I was actually getting away from anything that mattered.  I’d drink to have fun, and then keep going after everyone stopped, unless I’d find a lost soul in my situation that could keep the train moving forward and downward.  I’d travel to a new city because sitting in my living room lead to a racing mind.  The thoughts you’d sit with would be depressing in the moment, and would lead to horrific anxiety about the future.

Nothing mattered, nothing was more upsetting, nothing was that exciting.  For someone who lives life in the extremes of emotion, this is the worst place.  It’s not like you are stable and leveled out at the top of contentment.  You hover in a place much lower, as if you were rappelling with a rope that’s too short to reach all the way down to rock bottom.

Outwardly you try.  You try to smile and laugh.  You find hilarity in life, and sarcastic dark humor envelops your mindset, as that is the only way you can find joy.  You still make people around you have fun, but the toll on those closest to you is harshest.  They have to hear the same things, about the same shitty parts of your job, the same worries about your health, and the same questions around your heartbreak.

You try to do small healthy things.  Build them up and it will be better.  Do one more thing a day, and it will change things.  Then you have something good happen at your job.  Then you meet someone new who intrigues you, a romantic spark is lit in a cave that you thought was sealed.  That doesn’t work but you remember how feeling alive doesn’t just mean feeling the side of emotions built up with despair and pain, and you remember how ecstatic you can be.

You figure out that things weren’t all what you thought.  that that happiness you felt wasn’t an illusion.  Things really were that good in your life.  Things can be that way again.

Then you realize you’re not there yet, and it’s going to take some work to get back.  You realize that this has been the cycle of your life for the past 15 years, pretty much since you’ve been an “adult.”

In those times, you would take the feeling you have right now, that feeling of excitement, and actual planning for the good things that can be on their way and embrace it with open arms.   Only after those plans didn’t work out, and eventually things turned south, you would look at this as shocking.  How did this turn?  Why am I here again?

This time though, you think, “why not enjoy the ride up?”  Why not try to just get a little higher at the top, and then hold on to a little of what helps you get there?  Why not enjoy it now, and enjoy it tomorrow, as opposed to expecting to enjoy a future that may never come?

When you have no idea where you’re going, it’s scary.  But, that’s also where everyone is in life.  When you have no idea where you’re coming from, though, and how you got to places you’ve already been; well that, is just confusing and somewhere no one wants to be.

Where will you be tomorrow?  Next year?  Whenever?  You don’t know, but you know where you are right now.  How about enjoying that?

 

 

Life if not a TV Show

Over the past two weeks I’ve been watching every episode of “How I Met Your Mother,” my first ever CBS sitcom, and a show that I don’t love, hate how closely it seems to a bad version of Scrubs and Always Sunny in Philadelphia, but have tolerated.

By tolerated, I mean delusion-ally drew contrasts and similarities to my own situation in life for the past few years.  There’s the connections, the things that, in the moment, seem emotionally hard to even think about because I’ve been there.  There’s the differences, which are quickly forgotten because of some douchey line that you’ve said to a girl that the main character just said himself!

There’s the storyline, late 20’s / early 30’s group of friends hanging out, getting into hijinks and pushing through life, with the main character, Ted, showing the horrible, random, and ultimately depressing push through dating the wrong people on the way to his soul mate which makes it all worth it.

The problem is these things aren’t real.  They’re characters, and stories, and while they are based on real life, and the ideas of real people, television shows romanticize things, and can tell a sad story in 22 minutes, next week being able to turn the page and make things funny, or happy, or touching with ease.

Life doesn’t do that.  You may have 3-4 moments in life when you can take the bull by the horns and tell someone what you really know.  What you really want, and what is the scariest thing to ever say out loud, knowing that the other person may not react how you hope.  Those things happen in TV shows, and sometimes it’s love.  Sometimes, it’s a mutual understanding that helps the character move on, and realize that this isn’t the right time and place for this to happen in the plot.

In real life, sometimes, you hear what you always wanted to hear, realizing a few hours, days, weeks, or god forbid, years later that you weren’t right.  You didn’t love this person, you didn’t want to say that one thing to a parent or friend.  Sometimes, they say exactly what you knew they would say, and you realize you said it too late, or too early.  That you knew what was coming and maybe you just wanted to be able to say it so that you said it out loud, when you’re looking back depressed weeks later.

In real life, people move in, and out, of your life constantly, some through the finality of death that you, maybe, never get fully over.  Some are in out over a period of time, and then in firmly for a longer one.  Others, are in and out and then never seen again.  In real life, you may never get that chance with the girl, and you may fuck it up brutally without learning any lesson whatsoever.

In real life some bad decisions aren’t lessons, they are just horrible decisions that will affect you at another point in your life, or that you may never deal with the consequences for.  In real life sadness sucks, and you tell yourself and your friends that you like that, because it makes the happy times so much better.  In real life you only mean that some times.  There are others where it is the worst, and you aren’t OK, but have to put on the strong face for yourself and those that actually care about you.

In real life seeing the crazy girl you dated break down isn’t remotely funny.  While looking back, there are some stories that make you laugh, but most of them are about how stupid you are, not how horrible it was to see someone you cared about “hate you.”   In real life, you either write that person off forever, because you tell yourself that they were nuts, and were horrible for you, but also realize that they changed your life immensely, and brought value in as much as they tore you down.

In real life, you don’t sit around like Ross having a good time while Rachael is one of the friends, you are tormented by it, and just wish that things could be different, until they are.

In real life, disease sucks, and the current events of the people you care about gets dark at times.  Yes, there’s light, and a lot of good, but TV rarely nails how bad the bad is, when it’s someone you would do anything for, but can’t, including yourself, going through these bad things.

In real life no one cares when you are faltering, and honestly, they shouldn’t because it won’t matter until you do yourself.  In real life, you watch TV to get as close to reality as possible, while wanting a glazed over version that provides a lesson, or heart-warm, or hilarity.

In real life, the TV seasons end, and it’s on to another show, which can be as different as Game of Thrones is to Downton Abby.   In real life, you have to confront the issues that are coming at you, even if some of them are unfixable, unchangeable.

In real life, the guy getting the girl turns into horrific divorce, or even complacency over decades that drags at your soul when you look back with regrets in the future.

But, in real life you do have control over some of your own actions.  You don’t call that ex up because you realize that the times you’ve done it it has been unfair to you and to her.  You don’t keep wallowing because you just tire of it, and move on to something new.  You fixate on your job, on fitness, on a sports team, or on some new person you date.  You ruin some if, you fix some other things.  You realize that a quote you picked in the high school yearbook, with about 30 seconds of thought, is more meaningful to you now than ever. “Success is not forever, and failure is not fatal.”

In real life the stories that are already written, are viewed differently when you look back, dependent on where you are that moment in time.  There is no chance to change what is written, or put out a directors cut so to speak, but you view events of the past through a different lens.

If real life, when the show is over you have to move on.  You have to start to write your next episode, even if you’re not ready.   Or sometimes you can stop, and pause to watch 9 seasons of an above average CBS sitcom for a week, but where does that get you?

What’s the point?

As I looked back through the last two years of my life on this blog, I can literally see the cycle.  I get down, I work back, I feel good, I spiral.  I feel low, I don’t write anything for a while, I start to feel good, things get great, as soon as anything takes a turn I start to post on here, and in the next few months it’s going downhill.

I’ve lived life more in the last 3 years than I ever have.  I’ve done things I never would have, for good or bad, at any other point in my life.

I think I’ve learned a lot.  I think I’ve solidified my beliefs.  I think I know who I want to be, but I’m not sure who I am.  It’s this uncertainty that rules the spiral of life.  I wonder if my happiness is real when it comes, I wonder if my sadness if justified when it’s surrounding me.  I wonder when I’m going to take a turn either way at all times.

I can’t look back at my life and feel bad, I just can’t.  I’ve gotten to do some amazing things, and I get to live through some unrealistic experiences.  I am proud that I’ve done a lot of the things I’ve done, and I’m ashamed and guilty a lot less for some of the bad things I’ve done.

I just wish I could some sort of balance going.  I want to change some basic parts of my life, I want to not let “fuck it” become my motto, when it’s just a thought that’s good for coping with the bad.  I want to push forward with more that I’m proud of.

I won’t do any of this if I keep fluctuating from anxious bewilderment at the way I think, to confusion around how I got where I am in a situation.  I’ve found myself looking out at sunsets, landscapes, and even just situations and smiling more and more, yet that feeling of dread and sadness is in my stomach every morning when I wake up.  I think I appreciate the good times and beauty in life so much more because I know the bad ones and the ugly.  I know the feeling of uncontrollable darkness, so any glimpse of light is something to cherish.

I don’t know if anyone that knows me really knows how my thinking is processed.  Everyone has their mind race.  Everyone is worried or anxious at times.  I’m not sure everyone jumps from thought to thought the way I do.  I’m not bragging, it’s not a good thing.  My mind is racing from morning to night.  Numbing myself with anything from stupid entertainment to alcohol and drugs is the only things that slow it down.  Or so I say.  Or so I think.  But is that the case?

I’m not so sure.  In the beginning of the year, I did the whole 30 diet and about 45 days of pretty healthy living.  At one point in that period I was “doing great.”  My mind was at ease, my life was on track, and my thoughts were clearer.  But was this true, even?  I did healthier things that’s for sure, but I spent needless money on clothes and other shit I didn’t need.  I didn’t take care of my car situation even though I had no excuse.  I let my medicine prescription lag and ran out of my MS medication (which I haven’t restarted since).  This was the “best” me I’d been in years.  I did all this, but felt great.  I was able to not worry about any of this, and be happy and productive at work.

I did everything because I used distractions to what’s important.  I was focused on a doomed relationship that was in its balanced/happy period.  I let that take over my mood.  I let everything ride on that.  I just “knew” that everything would be ok, if I kept that going, because I wouldn’t let me fail, because of her.

When that ended, I gave up on the diet, and just “had fun for the past 4 months.  Where has that gotten me?  While its temped to say back to the same place, there’s also a plethora of experiences that came with it.  I value experiences, maybe because I don’t care about the future so much these days.  I have always been able to say “fuck it” to the future’s terror, but have never been good at moving beyond the past.

I still think about every person I ever cared about in dating, not that there’s a lot of them, and I still cling to the feelings of shame that I had when I was in my early 20’s because I’d messed up and wouldn’t hit my goals in life.  I still regard my family as something I either want to be proud of me, or want to forget exists so that I can just be me.  This mentality is bad and good, not just bad.  It leads to me being a decent friend and able to remember things from the past and act on them in the future with relationships.  It makes me a hopeless romantic, and while sometimes a douche, a pretty tolerable one.  It makes me care about how I got here, and realize that a lot of people helped me on my way.   It makes me not really blame anyone else for their actions against, or affecting, me.

That blame falls squarely in my own head.   I think some people think that I have no guilt for my actions at times, and think I deflect a lot.  Trust me, I don’t.  It sits firmly in there, screaming every day.  It’s what makes me not mad when a relationship is over, because “I didn’t deserve her anyway.”  It makes me deserve MS.  It makes me a shithead for not taking the absolute care of myself.  It puts the truth in my voice when I say that I know I will get cancer from smoking, almost as if I want it, or deserve it at the very least.

It’s what I have to figure out.  That statement, alone, is probably a fallacy.  Figuring this all out is something that is so far from achievable for me, that I need to stop trying for that.  I’m not going to understand that way I think, I’m not going to understand why I feel the way I do, at times.  I’m not going to understand why people are so different, yet so alike, that it’s scary.  I’m not going to wake up one day, and believe in some miraculous meaning of life.  I’m not going to turn a corner and do any of these things.

I’m, also, not going to do anything to myself, or give up entirely.  I never will, I know that now.  I’m not going to lose all of the parts of me that actually make me good, as I haven’t yet.  I’m not going to lose the fact that I still look SoMa’s craziest homeless people in the eye, almost on accident as horrible as that sounds, because there was and is a person in there.   My first instinct is to help people when I see distress, I’ve gotten “better” at ignoring that instinct at times.  I don’t think I’ll lose that as “good” as I get at being a dickhead.

I’m going to be here.  I’m going to change and grow, until the day I finally do die.  I’m going to die too, that’s something else I know.  I’m ok with that.

There’s no self call to action, there’s no moral of this post.  There just “is.”   There’s not anything I want to come out of this.  There’s just me getting it out there.  Me putting my thoughts on paper, and sending my emotions out in to the digital abyss.

There’s just it… at the end of the day, as many friend as I have, and as many people that I love and care about, and that do the same for me, doesn’t matter.

Because you’re always ending you days in your own head, and there all you have is yourself.   Figure that one out.

 

 

 

 

What do I want?

I want to be happy. I saw what that was a few weeks ago. I felt like there was nothing in the world that could take me down.

I started to do things I’ve put off for months or years, that needed to be done. I would wake up every morning, turn off my alarm, and get right in the shower.

I looked forward to conversations with friends who were feeling down. I knew I could help brighten their day, and wanted to have that chance.

I looked at my job and my career and was proud. I was excited to take on new challenges and my desk, email, and calendar were easy to organize.

I took vitamins and my MS meds every morning and every night. I would get tired of sitting inside and just go for a walk. I would look at the sunset and smile.

The cool air at night, and even rain seemed nice. I didn’t long for the warm to come back, and was happy walking to work from Bart with a stiff breeze in my face.

I looked at MS and wanted to help others win, to help the people worse off than me find a cure for them, not so much for me, because I was feeling fine.

I would look in the mirror and see my weight loss and be excited to lose more, and happy at what I’d accomplished.

Getting done work meant I would head home, and cook dinner. I was excited to try new recipes.

I would fall asleep, early, because I was tired. I would usually be texting or playing some stupid game on my phone, in bed, and sleep would just ease in.

Now I can’t sleep. I wake up 3 times a night, with a feeling of anxiety in my stomach.

I look in the mirror and see what else needs to change and just get tired thinking about the work I have to put in.

I hate being alone, anywhere, and want to be around people at all times, but then when I am, I don’t want to keep talking about bad shit, and I want to leave.

Any plans in my future seem like effort. They seem like something that will just take too much energy to do.

I think about cooking and even ordering food and decide that I don’t want to do that until I get to point where I just need to eat. Food’s not that appetizing anyway.

I get to work and the computer screen hurts my head. Staring at it makes me feel like I have so much stuff to put in order, and I’m so behind.

I throw my clothes on the ground until they pile up too high, then I put them in laundry bags until I get to the point where I need to wear something so bad I have to clean them, or pay like 80 bucks to get a washing service to do it.

I listen to my friends problems and try to relate but end up just coming back to my own issues again and again, feeling selfish, but uncontrollable at the same time.

I forget to take my vitamins every day, sometimes taking them when I get home, sometimes not; same thing with the meds.

I wake up with a shriek, and instantly want to go back to sleep. Usually this is around 5:30-6am so I change my alarm to a little later, but when I roll back over, I can’t fall asleep. I can’t think clearly. I just worry.

I have a feeling I haven’t had in a long, long, time. Just a general uncomfortable feeling that makes me feel like things aren’t right anywhere I am.

I want to be in public, but I don’t want to talk to people. I see the look of care my friends have when I say something sad, and that feeling hurts me. I don’t want to be around sad people, I feed off the energy of everyone I’m around. But, I’m the one making that feeling exist.

What changed? There’s the easiest answer; I was falling in love and that person decided they weren’t feeling the same way. That throws anyone for a loop. I mean if you asked people why they were sad, I would guess relationships, or lack there of, would be high on that list.

But, while I agree that this is a big factor in how I’m feeling right now, a few of the weeks when I was feeling my greatest were when I was starting to realize this relationship was in trouble.

I could, at that point, look at it and say, “if this is for real, it will work.”   I could look in the mirror and feel like another relationship would come along if this didn’t work.

While I told myself all of this, a few things changed as well.

I started smoking every now and then. I started drinking more and more, I stopped eating healthy, and I stopped exercising.

I started it off having a blast every time I went out. By this last weekend, I was back to where I’ve been way too much in the last 3 years of my life. Sitting at a friend’s house drinking, and trying to not feel anything.

I think it’s easy to point to the relationship falling apart making me want to drink and feel better.

I don’t know if that’s the direction I’d go, though.   Maybe it’s me losing my healthy streak, and losing all of the good things I was doing for myself, that put me in a position where I can’t weather a sad turn in my life.

Maybe, I know now, that my MS symptoms are much more containable if I try to be healthy.   I know that trying to drink to forget it only worsens my constant battle with depression, that’s lasted the last 10 years off and on.

Maybe, I know that dealing with my issues, makes them go away. That sounds simple, I know.

Maybe, I am realizing that my life is changing, and what I want in my life is so much different than I thought before.

Maybe I’m realizing that my approach towards the future has been off for a long, long time, and just now I’m realizing I need to improve that to finally achieve what I want for myself.

Maybe I’m realizing, that while I tried really hard to put myself in the best position for this to work, the last few months, I also did it for her, and not for me. That’s never going to work out in the long run. Maybe I’m realizing that as much as I was crazy about her, for about 90 percent of her, there was still that last 10 percent that was off.  Maybe she saw that 10 percent in me, or in us, and knew it wasn’t there.

Maybe I’m realizing that I’m going to do this again, with someone else. Maybe that person will make me feel the same way. But If that feeling is saving me from feeling like I do right now, and have, off and on, for the last few years, there will be no chance for that relationship either.

Maybe I realize that a lot of the things I did in this relationship, were out of fear. Fear that she wouldn’t think I stacked up and was “good enough.”

Maybe I’m realizing that that fear, and that feeling, is never going to lead to anything healthy for me again. Maybe I realize that if I choose to not change a lot of the ways I think and live, I will keep reliving this, over and over.

Hopefully I realize soon; that isn’t a choice I can allow myself to make.

Always, “what’s next?”

It seems like the “journey” with a chronic disease is more of a loop.   At least for me.  There’s times when I can easily just see a bright future where I want certain things for myself, and it’s easy to fall into, “fuck it, the future will suck, live it up now.”

I get motivated, usually by some external force, I do healthy stuff, I feel better, something bad happens, I feel worse, and I slowly slide into more and more unhealthy habits.  I guess that’s everyone’s problem.  I guess that’s not unique to me, to MS, or to anything.

The question for me is, “how do you stop this?”  I need to find an answer because living like this is a waste.  I didn’t fully enjoy a trip to Puerto Vallarta and another to San Diego, because I’m feeling down about myself.   That feels sickening to even say, because in reality, having the opportunity to do these trips is something that a very small percentage of people have.

The worst part for myself is the physical pain I feel in my stomach, but what makes it so much worse is the guilt I feel for even feeling sad or depressed.  I live a great life, I’ve said it many times here.

I think people need to be able to look at any situation outside of their own spectrum.  You need to be able to take a step back, breathe, and then assess everything like you are looking through the eyes of someone unconnected, and then through the eyes of someone close to the situation, often the person directly opposite you.  If you have a problem or disagree with someone else, take a look at the situation from their perspective, it will at least help you relate to where they are coming from.

This, for me, is easy when it comes to most things.  I pride myself on being able to see the world and respect other people’s perspectives.  When it comes to my personal life, and my thoughts about myself, that was, and is, never the case.

It’s easy to blame MS and the finality of the diagnosis for this.  It’s easy to use that as a crutch for why I’m upset whenever things don’t go perfectly.  It’s not correct, though.

If I’m going to believe what I’ve said before; “MS isn’t you, it’s not even a piece of you,” then I have to believe that this is a separate problem.  All I can give MS, in this fight, is that it clouds your judgement towards all things and makes you question if this disease is the reason things are the way they are.

After that, I have to put the rest on myself.  I have to look in the mirror and stare through the bad thoughts to the good ones.  Through my memories of actions and mistakes I’ve made to the wonderful moments where life was shining.  Through the clouded self-perception I have right now, and to the part of me that I actually like a lot.

I tend to talk things through, to a fault.  When speaking with friends in the last few weeks, a constant is that I need to fully get the confidence I should have.  I agree, but I feel that my one fear is valid.

I know myself, and I know that confidence and cockiness are tied closely together.  If I was truly as confident as people would like me to be, I fear that I would just be a cocky prick, which is a small part of me that I hate.

That leads to the conundrum of trying to be a nice person for someone that overthinks everything.  The fact that I take things hard and am self critical when they do go wrong, makes me a better and more likable me.  The fact that I take things hard, also, leads me to desperate decisions, which a lot of times are unhealthy and poor choices, which makes up the worst parts of me for those that care about me.

Now, add in my tendency to look for the blame and cause of things that happen, and you’re left with me looking inwardly and either blaming myself, and just concluding that “I’m messed up” or it leads to me blaming others or just blaming MS.  When this latter thing happens, I tend to look for anyway to forget about it.  That leads to drinking more, that leads to eating shit, and sitting in my room playing video games or watching Netflix.  That leads to nothing good.

There’s really no conclusion here that is a “let’s get this!” type advancement.  There’s nothing to tie up this thought process, and nothing that would make me just move towards a decision or a goal.  There’s nothing, but a sense of somber bewilderment at the fact that I am the same person who wrote from Mexico City a few weeks ago.  That person wasn’t the happiest, but that person also could easily look at their life with (what I think is) a more accurate and positive perspective.

A few days later, a lot of drinking in Puerto Vallarta and a few unreturned texts later, and I was on the path that’s kept me down through the most exciting years in my life.  I really have no idea where it came from.  I really have no idea what’s next, and this brings me to the one conclusion-ish thing I can draw from this.  Not knowing is life, not knowing is what makes finding out exciting.  Not knowing when you have something “wrong” with you, is terrifying.   Not knowing when you have a disease that reacts differently in different weather, at different times, with different diets, and with different people, is what makes accepting and moving on with MS so difficult.

 

“What would you say to yourself 3 years ago?”

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I feel that I’ve written in detail of the biggest struggles I’ve had since diagnosis with MS: depression, anxiety, and coming to grips with the longevity of the disease, and the meaning of life in entirety.   I also feel that these struggles may be more specific to myself in their enormity and significance.

Recently I’ve been inspired by my few days in Mexico City, where I’ve walked into a young, professional, and thriving Mexican culture; that seemingly takes from it’s thousands of years of heritage to develop a level of pride, exuberance, and blunt acknowledgment of reality to develop it’s attitude.

With this in mind, I got to thinking about an interview I did with Healthline, two days before I left on this trip.   In it, they asked what I would say to someone just diagnosed. I, being me, tried to say something simple, but then got caught in a long diatribe, and struck some good points amongst a bunch of rubbish.

“MS isn’t a piece of you, or a part of who you are, it’s something that you will have to confront and deal with, but it’s not something that will define you. I’ve had the best three years of my life since my diagnosis.” Then I stumbled into my own self-realization/justification for the second part of that sentence; about how I struggled hard for a bit but now know myself better than ever. The interviewer asked, “How has your life gotten better?”

I think I did a fairly decent job paraphrasing that day, but I wanted to take the time, mostly for myself to do that now.

In three years since I was diagnosed, I moved from the comfort of all that I know and set out West to San Francisco and the Bay Area.   In those three years, I’ve kept multiple friends from my past, while making new friends in new situations. I’ve learned more about what I truly believe about myself and the world around me, by being confronted with many people with differing beliefs and engaging on conversation and dialogue.   I’ve learned more about how I feel about my hometown and childhood, by learning about people with much different backgrounds, and by moving away from all of the people I knew before.

While the move to SF is an easy thing to point to, that simply, doesn’t explain the best things about the last three years.   The fact that I made the move, which for some of you will sound simple, almost like a “no-brainer” decision, and for others sounds like such a big risk, is a huge factor. Being diagnosed seems to have opened up a thirst for living life, that I didn’t have before. This move was a part of that.

Professionally, I’ve grown and learned to be more of a leader. I’ve been a part of something special, at RockIT Recruiting, which I will also have to add; I got very lucky to be a part of. Through the people here, I’ve learned to push myself, and that I’m not “that” smart, while gaining confidence and a more accurate view of my own intellect.   I’ve gotten lucky to meet a ton of people I consider my close friends, in the offices that we’ve inhabited.   Few have moved to new things, and are still in touch, but, in another lucky event, most are still working by my side 3 years in.

I’ve learned a bit more about myself in dating.   “How do I date girls if they know I have MS?” was the first thing in my head when I left my one, long term, and hectic, relationship with the only person I ever loved 3 years ago.   In the years since, I’ve dated a lot of women in many different circumstances, and I started off not talking about MS, ever, then decided I was going to be open with it.

I can’t point to one person who walked away from me because of it, and I can only say that it changed relationships that I’ve been in. It’s made me confront my own health a bit, as I realize that MS isn’t too scary for women I will date, unless I’m being particularly unhealthy.   The things I put up with in relationships have changed, and the things I look for and think about for the future are constantly being updated.

While I’m not where I’d want to be in this regard, I can take a lot of solace that in the last few years I’ve hung out with, hooked up with, and dated a few people that are excellent, and were positive influences on my life.   MS didn’t make this easier, but it sure as hell didn’t take it away.

I’ve traveled more than I can comment on. I did a lot of travel in the US, which I feel is under rated. The United States is huge, and starting with my 3 week road trip from Lambertville, NJ to San Francisco, CA, I learned I wanted to see more of it. Big Sur, Tahoe, Seattle, New Mexico and Arizona, San Diego, Newport and Laguna Beach, Denver and Steamboat, Sonoma and Napa, New Orleans and my possible favorite, Austin are all places that I’ve fallen in love with for sometimes surprising, sometimes not, reasons.   The country I live in is huge, and there are a lot of places that I just don’t feel happy in. But, all over, there are places to love, and places where I didn’t think about before I saw them.

I’ve gotten the chance to explore outside of the United States, and awaken a hunger for more. I fell in love with Barcelona at first sight, and then stumbled into Lisbon, missing Barca until I saw the wonders of Lisboa, Cascais, and Sintra.   I had more than a few pints with some wonderful people in Dublin, and thoroughly enjoyed the Irish culture. I am, right now, reevaluating everything I would have ever thought of Mexico City, as I sit in a wonderful flat in El Condesa, and feel that same fire I did in Barcelona. This city and the wonders I’ve seen here, have been amazing, and it makes me feel alive.

I used to strictly travel to beach towns, as I love warm weather, and I love the ocean. I love the coastal views, and I love the sun. But, now I’m realizing that there are many other things to explore, and I want to see Central and South America, and more of Europe, followed closely by my first glimpses into Asia, Australia, and Africa.

I haven’t totally gotten a grasp on my health and my internal feelings towards myself, but I’ve made strides forward and steps back in this regard more so than I ever have.   I’ve learned more about healthy eating and how it makes you feel to really cut all of the toxins out of your life. I’ve learned more about falling into despair and adding all of the possible toxins into your life, and the way that effects anxiety, depression, memory, attentiveness, and just day-to-day life. I’ve struggled to quit smoking like 13 times, and promised to myself that I won’t stop fighting it.   I’ve learned that my vanity and confidence can be quickly boosted, if I just fight to stay in better shape. I’ve learned that that is worth it for my happiness.

The one thing I’ve learned most, though, is that while you are alone on this Earth and can’t really count on anyone else, like you can count on yourself; there are still people, knowingly, and unknowingly, around to help you find your way and help you evolve as a person. As you meet more people, you will be given a chance to think about the bad in people or the good in people. I have to admit that there are many times, since MS came into my life, where I focused on the bad in the world, especially the bad in myself and my thoughts/actions. But, I still haven’t lost that overall outlook, that optimism that keeps me palatable to myself.

MS, and other diseases, can’t take that from you. Nothing can. It’s yours and yours alone.   Don’t look to friends, family, dating partners, or anyone to define that part of you. Don’t let experiences, some that are horrific, define how you approach life.   And keep going. The more inquisitive and explorative I become, the more I like myself, the more others close to me seem to like me.

I still haven’t figured out the meaning of life since my diagnosis, and I am fairly sure I never will, but my overall understanding, empathy, and compassion for other people, and my understanding of my abilities to affect others, and to lead and even, at times, inspire, has only grown the more I learned.

Don’t let some outside force hold you back from what you are curious about. Yesterday I climbed the Pyramid of the Sun at Teotihuacan. I struggled to get to the top, and then stood there looking out over the valley that was settled almost 2000 years ago by pre-Hispanic Mexican tribes, and I was suddenly overwhelmed. Without being diagnosed with MS, I probably wouldn’t be standing here right now. And that’s fucking awesome.

Whole 365?

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So I finished Whole30 on Feb 4th.  I felt great.  I was actually scared to start reintroducing foods that I used to eat every day back into my diet.  Then I drank alcohol.

The first night after I started eating gluten-free grains, I decided to have a whiskey.  Then I had a second.  It was a blast, and I was just hanging out with my roommates in Alameda.

Nothing too fun, nothing too bad for me, and a great time.  I woke up the next day a little more tired than I have been, but all in all, felt great.

Then the weekend hit.  It was just Super Bowl 50 week in San Francisco, and the town was bumping.  I had a great time at my work happy hour, and then rolled to a few parties at clubs and what not, and ended up getting back to Alameda at like 4 in the morning.

After sleeping, horribly for about 5-6 hours, I ventured into North Beach for a Mardi Gras celebration, and decided to see Metallica at ATT Park that night.

I felt horrible showing up, like I’d forgotten what hangovers felt like.  I also utilized the age old recovery method of having another drink to get going.  I will say I had “fun,” but I’m not even sure that I totally did.

It was great to see all of the people I haven’t seen since I was a mainstay at these same bars, and Metallica absolutely destroyed.

But, the next day, waking up, I didn’t really remember most things, and I couldn’t find anything to be happy about.  I struggled through my day, went to a super bowl party and went to sleep early, figuring I needed to recover for Monday.

Reading all of this just feels weird now, where just two months ago that was my usual weekend routine.

The problem was, I didn’t recover how I remembered.  The last two days have been anxiety filled, lethargic, and just plain depressing.

Things I looked at a week ago and came away happy now bring worry, fear, and hopelessness.  When I looked at myself I say “yeah, you lost weight, but you’re still fat.”

Within hours of my work happy hour, I had bought cigarettes, and I spent yesterday coughing up shit, and fighting the urge to buy them again.

I’ve sat here all day on Tuesday, working from home, and trying to keep a focus that I’ve mostly had for the past month without really putting too much pressure on myself.  I am starting to feel like I miss home again, time to time, and wondering if I’d want to stay in the same bay area, that 3 weeks ago I remember saying, “is the only place I can see myself feeling at home now.”

So what does this mean?  I’m sure there are a good amount of people that know me, that would say “stop drinking, stay eating healthy and keep this going” without thinking, and where I’d usually make a case against that here, I think I agree.

I am going to go to Mexico in a week, and I’m going to probably party a bit in Puerto Vallarta with my company after doing some exploring in Mexico City for the first few days.   After that, I’m going to cut out meaningless drinking entirely until March (and only if I go to the first weekend of March games).

Then, I’m going to go full Whole30 again, and push with that until I’m in New Orleans in late April/early May.

I may realize that this is hard, and have to just stop drinking.  I personally believe that there are different levels on a spectrum of all types of addiction, and I think the way I react when cutting something addicting out of my life is a sign that I’m not one of those people who would need a drink every day, or someone who even struggles saying goodbye.

My problem, as with anything in my life, comes from my view of myself, my self confidence, and my feeling of missing out on something exciting.  I drink to get the confidence to do things that I would be scared to do, mostly with women.  I feel bad, and realize that I can have fun soon as I break down my inhibitions, so I mend the pain with some alcohol.  I keep pushing, thinking that if I stay out a little later, I’ll meet that one girl, or get that one text that leads to something else in my night.

All of this, I’ve known for some time.  The thing that a month of whole30, a month of focusing on me and making myself feel good, has changed in me, is that I’m realizing how this cycle exists in me.  The after effects are almost unbearable, and last night I sat here in my apartment, knowing that if I drank a few drinks I would feel better, the anxiety in my chest would calm down.  The running thoughts in my head may keep going, but they’d slow and I could find myself distracted by a tv show or movie.  I’d wake up today, and feel better, to an extent.

But this didn’t feel right.  And this felt like the saddest way to live I could imagine.  I think what I liked most of the last month, is that the happy times felt more sincere.  The best times I had and the conversations I had (which I have a lot of) were deep and thought out.  I didn’t just say things to placate or to make others happy as much, because I was more skilled and smooth about disagreeing.  Sobriety made my mind clear, and made me not feel like jumping from moment to moment to get away from bad thoughts.

This is something I liked.  This is something I already miss.   My health is a big deal.  My life is a big deal to me.  I feel like in the last three years I’ve changed more than anyone I know, and tried to stay the same in ways that are unhealthy.  Something as simple as realizing a lot of people love drunk me, because I’m fun, makes me feel like I owe it to them to give them that.  I think I’m getting closer to realizing that the people who truly cared about me are the ones that were over the top telling me how proud they were to find out I was doing this healthy change, and they are the same ones who would look at this weekend, and say, “it’s ok, just keep going.  If you need anything, I’m here.”  Which many have.

I feel like I’m finally ready to start joining that team and really focusing on moderation.

 

 

Cycling

I started trying to write because I figured that MS and it’s effects on me would be the biggest hurdle I’d have to overcome.  I wanted to get out my comfort zone, and put my internal struggles out there online, so that I could a) hold myself accountable, and b) provide a look into the way people’s lives change and evolve after a diagnosis like this.

I thought I’d write a lot about bettering myself, about the things I did to turn positive and stay there.  I knew I’d write about the downturns and how I was affected by them.  I knew I’d have moments where things are bad.  I just didn’t know how much this would evolve into a blog about depression and those downturns.

Is it because I turn to writing when I have nothing else left?  Is it because I’ve been more and more depressed since this journey started?  Or is it because this struggle with depression is me, and will always be me?

I don’t totally know when this outlook started.  Did it manifest itself in 2005 when I left Penn State the first time, a failure in my own mind?  Or did it start earlier in life?  As far as I can remember my childhood and teenage years were pretty great, but I forget about the constant feeling of missing out, as I didn’t really party too hard, and constantly hung around a few girls that I thought I was “in love” with, although I was just a horny teenager who was conflicted towards who I was, and what I wanted.  I never hooked up with any of the people I’m talking about, and constantly made myself a little miserable thinking about it.

I also knew that I was popular, that I was smart, and that for my small town, I was also fairly athletic.  I knew that my parents had worked hard, and that I didn’t have too many worries.  I knew that even though they were split up, I was lucky because my mom and dad don’t match, at all.  I knew that I could hook up with certain girls, but I was afraid to do it with most, even if I wasn’t into them.  Yet it’s all I wanted, just with a select few.  It was like I had a horrible self image and low self esteem mixed with unreasonable standards, not so much high, but more very locked in and particular.

This lead to every hook up I had being meaningless, and the use of attention from girls I knew had a crush on me, just to boost my ego.  But, I was a “nice guy,” so I’d be polite and not ever mean to anyone, those staying friendly (and probably making it worse) for the people I was tied in with.  It lead to constantly shying away from taking a chance with someone I actually liked, until it was too late.  It lead to me not totally valuing all of the great stuff I had going for me outside of this part of my life.

This probably continues to this day.  Aside from one really long, and really chaotic relationship, most of my romantic experience stems from hook ups and either people I stop calling and “ghost” or people that do the same with me.  That one relationship probably only “worked” because we understood each other’s lack of self worth, and it gave both of us an outlet to realize that there was some good in us.

Are all of my problems tied to relationships?  I don’t think so.  I think this is the facade that I use to cover up all of my real issues.  I think that I have a lot of hard inner work to do, so that I don’t let this destroy me.  And buoying my feelings and emotions by throwing my happiness on other people is only going to end in destruction.

MS didn’t create this dark cloud, it was just the high pressure system that expedited it.  Where my life in my twenties was defined by the initial fuck ups, and the climb out of them, with constant battles to overcome dark moments  in time, a diagnosis of MS at 30 has made the periods of happiness and light more infrequent, shorter, and also more high pitched.

When things are good, I’m sky high.  I’m proud of myself that I overcame my failures, that I am succeeding while dealing with these health problems and that I can still be sharp even though just thinking it so much harder than it has ever been in my life.   I drive to work glancing at the Golgen Gate bridge in the distance.  “I made it,” I say internally.  I feel like I can do anything and the future is exciting.  I’m going to travel, and I’m going to do great things.  All of my worries slide away, and I’ll get to the things that are wrong eventually.

The problem is they don’t slide away.  Bills get forgotten and go to collections.  My health gets better than gets put on the back burner as jubilation turns to celebration and celebration leads to life hang overs of despair.  “Fuck it, let’s just have a good time.  LIfe’s too short” turns to “fuck it.”   My future is muddled.  The girl I’m seeing shouldn’t want to be with me because of who I can become, when I’m at my worst, and what I will be in the future.  My friends are all doing better than me, which has never lead to jealousy, just the feeling that they are all just dealing with me, and constantly keeping me around because they feel bad for me, and that they all wish I was that fun person I am when I’m at my best.  My family goes from proud of me in for coming back at life, to distraught that I’ll never be like them, or be a stable adult.  My work goes from something I’m immensely proud of, my company something I feel like an integral part of growing, to a life getting privileged developers jobs at companies financed by overpaid billionaires, with the mission of making the world a better place, all while we destroy it from our thrones in Silicon Valley.

This constant cycle feels like something that’s been a part of my life forever.  It’s always been “if ___ happens, I’ll finally be happy.”   Then I do ____, get happy, and things start to slide.  Now it’s ramped up, maybe because of actual damage from MS, maybe because of the damage I’ve done to myself over the years, or maybe because I’m just getting older and realizing that one of the most popular people I know, doesn’t really have anyone.

The ones that are there for me, family and close close friends, get written off.  Never consciously, but it happens.  I  know they’re there and I only draw positive thoughts about myself from them when I’m at my lowest.

I know that I need to do something for myself, not something selfish or extravagant, like I always do, but something that will actually help me be happy with me.  Something that can help me get purpose.  Something that will give me a reason to wan to live a mostly healthy life and want to be around in 50 years.  I need to figure out a way to keep making healhy choices.  Not smoking for a month, or eating healthy 70% of the week doesn’t do anything if you keep cycling back.

What scares me is that I may have to make an acknowledgement and come to grips with the idea that I am flawed, that I have made horrible choices, and that I can’t keep going as is.  I won’t make it through the next ten years if I keep progressing the way I have the past few years.  I won’t want to either.

I need to remember that I love life, that I love a lot of people, and that I love experiencing new things.  That I love reading, even though I fall asleep every time I try to now, that I love sports, beaches and water front views.  I need to realize that I can still experience these things, and not just as a distraction (which is what I’ve made all of this in the last few years).  I need to realize that mindfullness is something I have to reach for, that Matt Walker is going to die, and that while you’re ok with that, it isn’t something to make you throw away the time you have here.  It isn’t something that erases the experiences you could be having if Matt Walker actually loved himself.

No relationship, job, party, car, or vacation is going to make me happy if I don’t do something about my decision making and depression.  It’s terrifying to start this part of the journey because there’s a point where you will have to admit that there’s something else “wrong” with you.  There are people that you see in your life that will deny it, or will say they understand but shy away.  There will be people that project their own feelings onto you, and it will make you feel like they don’t get it.  There will be women that will write you off, as a long term prospect.  All of this doesn’t matter, at least not yet.  Worrying about how others view you, and fear of being alone is what dicates your life.  Make a change and do something to get over that and move forward.

Now, about that change…..