Vision

by mvw110

ms muckfestToday I visited UCSF: Mission Bay to go into the neurology department.   I spent a few hours undergoing different visual testing to get an idea of what damage I’ve had from MS so far, and to see if things have progressed from 2012, the first time I had these tests.

Going into the Doctor’s always brings me back to the mindset I had two or three years ago, when I knew that something was wrong with me, but I didn’t know exactly what it was.  I would like to say it was terrifying, but in all honesty, I was more concerned with worrying about my relationship at the time, and wondering where my life was going to go.  I was applying for jobs, I was thinking about a move, and I was wondering where everything went in my future.

That same mentality exists now.  I would love to say that when I freak out, or worry, it’s about MS and the path that I may take.  That it’s about the stories I’ve read about people with MS that specifically attacks their Optic Nerve, the one’s where they go legally blind.  I would want to say it’s about me worrying about where my balance will go, or how much worse my motor functions will get.

It’s not.  It’s usually about women, or my friendships, or my work.  I don’t know why I can’t put my worries in the right place, so to speak, and focus in on MS first, but I can’t.  I feel that part of it, is my tendency to look for an instant solution to every problem I have.   If I like someone the answer is to go for it and see what happens.   If I have an issue with a friend, it’s a discussion.  And, with work, the answer is to just get a few placements.

With MS, there is no one answer.  I don’t even know the question, really.  Where does my life go?  What will happen to me?  Will it affect my career?  My relationships?  My psyche?

In the last month, so much has happened.  I look at my life and know something’s missing, and I know I have issues.  I know that the specter of MS hangs over everything.  But I feel like perspective is what I really need to get to where I want to be, because I may already be there.

Every week I’ve done something new and cool.  I’ve sailed on the Bay on my friends’ sailboat.  I’ve traveled up to Clear Lake on an all-expense paid trip from work.  I’ve met with some of the hottest startups in the world, such as Vicarious and Databricks.  I’ve completed a 5k mud run, for MS, and had a blast doing so.  I’ve tried to play softball, I’ve played kickball.  I’ve had a great birthday, and got to watch F-18’s fly over San Francisco from the docks and an amazing rooftop.  I’ve gone to a Giants game, and I’ve gone on literally 10-15 first dates in the last 3 months and met a bunch of people.

How can I look at that and act like I’m not enjoying myself.  How can I look around myself and not see how many good friends I have and how much of a good time I have, all the time?  How can I not just be content?  Why do I always feel guilty, and why do I always feel like I’m messing something up?  Why do I make snap decisions, and feel bad every time I’m by myself?

I don’t know the answer to any of these questions, but rest assured they don’t reside with some girl I like, with a new placement at work, or with some beers with friends downtown.

They are in me.  I’ve noticed that so many people have self-confidence issues everywhere.   I’ve noticed that when people act this way, it’s impossible for them to see themselves the way others do.  You only see the bad.  Everything that goes wrong is supposed to happen that way, everything that’s good, is luck.  Any girl that’s into you, isn’t good enough.  Conversations feel awkward, because you’re assessing how everyone else feels instead of just interacting.  A small slip up is you being stupid, and being tired and wanting to lie in bed is laziness.

With my MS the symptoms can be scary.  I suck at softball.  I know I was never great, but I played baseball for 14 years.  I can’t track the ball, and I am possibly going to die from a hard hit ground ball or line drive at some point.  I swing and just feel like I’m going to crush it, and the ball hits 5 inches more inside on the bat, because my left eye’s vision has been affected.  Does this just get progressively worse?  I learned scientific proof of this today.

I took part in evoked potential tests and some other visual testing today.  The results were pretty conclusive.  My left eye is fucked.  My vision, when looking at something standing still is still excellent.  But, when movement comes into play, things get shaky.  My right eye is good.  I see things well.   My depth perception and tracking is off, and I just know it.  Well, now I have the results.  The first thing they did was attach electrodes to my head and read how long it took for visual stimuli to get to the vision center of my brain.  The eyes sees things fine, but when the signal gets sent back, my left eye is significantly slower than my right eye.   They also measured my optic nerves’ width.  The right eye, again, is normal.  My left eye, is more narrow, shrunken from damaged myelin around the nerve.

On one hand, it’s justification for knowing that things weren’t me just getting old, or me being out of shape, when everything felt different.  On the other, it’s hard evidence that damage has already been done to my brain, maybe when I took 1.5 years to try and come to grips, and to take control of my health and MS, or maybe damage is still being done today, because even the best MS meds only help about 50% of the people that take it.

It just adds to my 2 big current worries.  It adds to that ever-present feeling that no one will ever both like me enough, and be intriguing and good enough to my overblown standards to be with me long enough to be there if things go bad.  I know that I was in a 4.5 year relationship with someone that everyone close to me, told me I was better without.  But, you all have to remember that I just centered on a part of that person that was good, and combined that with the idea of what she was on paper when I met her, all the while forgetting about the other things that were toxic, hurtful, and just not things I like about people.  But, that’s the only person I’ve had in my life where I knew I loved her, and I knew she loved me, at the same time.  And to have that person threaten my job, friends, and life out here as the last time we were ever in touch, hurts.   I wonder if my inability to really be mad, or to really hate her comes from a good part of me, the good parts of her that I once knew and loved, or from my lack of confidence in myself.  Or from the idea that anyone that falls in love with me, is going to have to be a little fucked up just for it to work.

The other worry is my career.  I know that I can be great at what I do.  I know that I enjoy doing it.  I know that I love learning new things about tech.  But, it’s already hard to have the energy for the fast paced “Work Hard, Play Hard” SF startup life.  What if things get worse?  What if I can’t get around as easy?  What if staring at a computer or walking to different meetups is just too tiring to do?  What if I never get back to how I felt in the spring, where I just knew that I was going to succeed at everything I did?  What if this is all connected?  What if this is all MS getting to me?

I don’t want people to think that I’m back in the place I was in over the summer.  That I’m legit depressed and worried.  I’m doing things that I wanted.  I’m trying new things.  I’m experiencing life out here.  I’m mostly happy.

I’m starting to confront my growing medical bills, starting to look for the good in situations and understand my current mindset.  I’m starting to think about being mindful, and starting to practice different techniques to center myself and not overreact to negative situations and feelings, while trying to not get too caught up in the hope for great things in the future.

Just today, I took a look at my results and was hit with a big possibility of good news.   Researchers at UCSF are conducting a study of an anti-histamine with no real side effects…. Aside from that it has been found to grow new myelin in mice and in early tests.  If my results hold from today, I will be a part of the initial study.  If they can regrow myelin, that could mean that for one of the first times, they could repair damage from my MS.  It’s exciting to be a part of, and it’s so amazing to have that hope for my future. Months ago, I would probably have just decided that this is a crapshoot, and not something to lean on.  Today, it’s the only thing I truly heard in my time at UCSF.

If I’ve learned anything in the last year(s), it’s this; whenever you think about something that is in the past, the true memory will be altered by your current mood, just the same as when you think about a prediction or question about the future.  The only way to enjoy this is to live in the now, don’t have regrets, and take things in.  Stop looking at your phone, or Facebook.  Stop wondering what someone is up to.  If they’re out of your life, move on, if they’re in it, call them and ask.   Interpersonal connections are important, and you’ll never have real ones if you’re always looking to get something out of it or you are always trying to think ahead of the conversation.  Enjoy those around you, and do it when you’re with them.  Have fun, be loved, and love.

I’m going to try to start writing more again, because I’ve done a lot of amazing things in the last 2 months, I just didn’t feel that way when I looked at them.  How wrong I was.  How amazing life is.  I think I’m truly starting to believe that.

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