Tuesday, December 29, 2015

Someday, Someday It Will Be Okay

I don’t avoid talking about difficult things on this blog, but sometimes I need time to process and think through things before I talk about them.  So now’s the time to talk about the fact that my boyfriend of three and a half years and I broke up, and as of a few days ago, I’ve moved back to Michigan.

I’m sad.  More than sad.  But I also realize that maybe my ex-boyfriend would never be the partner I really needed him to be, and maybe I never would have been the partner he needed me to be for him.  That’s a hard realization after almost four years of dating someone.

I’ve also realized that I can feel bad about myself without anyone making me feel bad about myself, and I can handle my stuff alone, and I don’t need to be with someone who says it will be okay because I am the one who has to make it okay.

Part of me thinks that it’s really hard to judge a relationship on a time in our lives that was so difficult.  We moved from Michigan to New York, I started a new academic program, my boyfriend struggled to find work, my grandpa died, my dad died, after spending a year and a half living with my boyfriend’s dad, we moved into our own place, I got a job, that job ended, I got a job, and that job ended.  That’s a lot for anyone to experience in that amount of time.  You think that when you’ve made it through things like that, you can survive anything. 

Maybe things would have been different if we lived somewhere neutral, where neither of us was surrounded by our family and friends.

Maybe things would have been different if my dad hadn’t died.

Maybe, maybe, maybe.  Maybe not.

I’ve come to the conclusion, which I probably should have figured out a while ago, that I don’t think I would ever truly be happy in New York, even if I had the best job and the most loving and supportive significant other.  And I’ve been lying to myself for a long time, because when I have envisioned my future, I have envisioned it in the Midwest.  And I’ve wasted too much time listening to others put that choice down, even when my heart and my head both knew that, that was the best option for me.

I am filled with so much guilt and regret that I wasn’t there when my grandfather died and I wasn’t there when my dad died, and while maybe that guilt is misplaced, I don’t want to feel that way again.  And I don’t think I could take getting another call like I got when my grandfather died and when my dad died. 

I’ve never felt like New York was home.  I’ve been surrounded by millions of people all the time, and I’ve never felt so alone.  The pressure to be everything all at once is too much.  And the truth is, I wasn’t my best self.  I lost my best self in the constant wave of strangers that surrounded me.  While in Michigan I was a hustler, in New York, I wasn’t even average.

Somewhere along the way, I became totally couple focused.  It wasn’t just about me.  It was about us.  I put us first, instead of me first, which is stupid when the other person is focused on themselves first.  And when I started asserting my wants and needs, that just wasn’t okay. 

A relationship takes two people.  And if two people aren’t in it, it’s not going to work.  A lot was put on me, but chances are, this was inevitable, whether it happened now or later.  It’s just hard when you truly believe that, that person is the one, and then you find out that they’re not. 

It’s also hard because I was so na├»ve and so caught up in it all that I didn’t think this person was capable of hurting me.

When we laughed, we laughed hard.  And when we cried, we cried hard.  But lately, there’s been too much crying, and I’ve done most of it.

Right now, I’m not okay.  There are things I have to work on, mostly focusing on myself and putting my time and energy back into the things that used to make me really happy.

I’m not going to apologize for my illnesses, I’m not going to apologize for my dad dying, and I’m not going to apologize for being me.

Not only did I no longer recognize the person I was with, I no longer recognize myself.  We were two ships passing in the night.  Two strangers living parallel lives. 

I took second string to everything and everyone around me.  And I don’t want someone who is going to put me first as a favor.  I want someone to put me first because they genuinely want to.

I also want someone who isn’t going to rush me through my grief over my dad’s death, especially someone who has been through a loss of a parent themselves.

This is not where I thought I’d be at 30.  Two Master’s degrees and a PhD, uncoupled, unemployed, and moved home to live with my mom.  But things can only go up from here, right? 

I kind of feel like Annie in “Bridesmaids”.  I’ve hit bottom.  But as I always do, I’ll get up, dust myself off, and move forward. 

I am going to leave you with the lyrics to a song that I just discovered, that really speaks to where I’m at right now:

“I know they say, you can’t go home again
Well, I just had to come back one last time […]
You leave home, you move on
And you do the best you can
I got lost in this whole world
And forgot who I am
I thought if I could touch this place or feel it
This brokenness inside me might start healing
Out here it's like I'm someone else
I thought that maybe I could find myself
If I could walk around, I swear I'll leave
Won't take nothing but a memory
From the house that built me”

“The House That Built Me”, Miranda Lambert 

Wednesday, December 23, 2015

My Life Through Someone Else’s Eyes

I’ve been feeling kind of down lately and there’s a lot I’ve been trying to deal with.  I’ve needed a pick me up. 

I’ve allowed other people to treat me badly, and what I’m realizing is that I don’t need those people in my life.  I can make myself feel bad about myself all on my own.  I don’t need other people to do it for me, especially when I don’t deserve it. 

Through all of my traveling this past fall, I had a lot of amazing experiences, and it was the only time that I’ve really been happy in the last several months.  Two have been particularly special.

The first is that, because I gave an ePatient Ignite talk at Stanford Medicine X this year, Stanford sent a documentarian to New York to videotape me, sort of chronicling a day in the life of living with chronic illness, for an introduction video that they played before I went on stage to speak. 

I have to be honest, I was really nervous about this.  The last time I had a video camera in my face, I was in sixth grade, working on a group video project, and every time the camera was turned on me, all I could do was laugh.

It’s also a bit stressful to let a stranger so intimately into your life without really knowing them ahead of time.

We were able to coordinate so that the documentarian came to my doctor’s appointment with me.  I had to get special permission from the hospital and my doctor, but I think it was great to see that aspect of my life. 

In the end, it was an amazing, adrenaline-filled day.  And I definitely made a new friend in the process.  Filming with the video person actually felt really natural, and we bonded and talked a lot in the moments that we weren’t filming.   

So I wanted to share that film with you.  I was trying to wait to share it along with my Ignite talk, but I’m not sure when that is going to go up. 


The other experience was becoming a member of Regina Holliday’s Walking Gallery of Healthcare.

I’ve been wanting to be a part of it for many years, and the day finally arrived. 

Coincidently, the blazer arrived right as I was leaving for my last conference of 2015, so I feverishly opened the box and took it with me.  I wore it, and will continue to wear it, with pride.

I had sent Regina some ideas about my story and what I thought that might look like through art, but I never could have imagined that my blazer would turn out the way it did.

The painting is of me, traversing a ladder.  Half of me is wearing a graduation gown and the other half of me is wearing a hospital gown.  The ladder evolves into two rungs, one that is made of diplomas and the other that is made of bones. 

It’s so profound.  And it tells my story so perfectly.  I’ve been saying for the last eight years that I’ve been living two lives and working two full time jobs, being a student and being chronically ill. 


It’s nice to hear that I’m an inspiration to others, even though that makes me a bit uncomfortable.  But it’s nice to be able to see myself through someone else’s eyes and genuinely like, and am proud of, what I see. 

It’s a pick-me-up I really needed, and I’m so glad that I can view these as often as I need to, to remind me of how I got here and why I do what I do.  

Wednesday, December 9, 2015

Finding My Way Back To Myself (And My Blog)

Over the last five months, I’ve been really struggling.  My time has been consumed by a job that I used to love, but had increasingly become toxic.  And then it was ripped out of from under me once again, almost as quickly and easily as it had fallen into my lap.

I promised myself this time that I would concentrate on the fact that the job was only temporary.  And I wouldn’t get seduced into thinking that I could make a career out of it.

It doesn’t make sense.  I know my supervisor will retire in the next few years, and the person that they hired after my first stint, talks openly about the fact that he will retire in a few years as well, so I can’t figure out why they wouldn’t want someone young and fresh to groom to make a career there.  But I guess that’s not my choice to make.

It seems that the problems of the patients that I was dealing with consumed me.  When I first started working there, I was so pumped and energized, and felt like I was really helping people.  But then things started going awry, patient complaints got worse and came in much more frequently, and I was increasingly having to put out fires that I didn’t cause.  But that doesn’t mean that I was ready to throw in the towel, not by a long shot.

But in that time, everything else has fallen by the wayside.  My blog has suffered, my writing for the other blog sites I write for has suffered, and the only time that I’ve been truly happy is when I’ve been doing patient advocacy work, going to conferences, being around other patients, and speaking.

Sometimes life throws us opportunities.  And I am grateful for the opportunity that I was given in my previous position.  It has taught me about myself, and what I do and don’t want to do.  First and foremost, I want to help patients navigate their healthcare.  I want to be part of the solution and not part of the problem. 

When my first stint came to an end, I was devastated.  However, I looked at it in two ways.  One is that the offer came at a time, a few months after my dad died, that gave me the ability to get out of bed and have somewhere to go every day, when I easily could have disengaged completely.  It gave me a purpose.  And two, then I had time, just as school was getting crazy and coming to an end, so I was able to finish strong.

This time, I was also devastated, but not surprised.  I worried all along that something would happen that would leave me jobless.  And apparently, budget cuts are at the heart of this (at least that’s what I was told). 

I put so much time and effort into this position.  I gave it everything I had, and then some.  And again, I allowed everything to suffer, my relationships included. 

So now I’m working on getting back to what I know and love – blogging, writing, advocacy, and creating small jobs for myself that will hopefully lead to something bigger and better.

I know that wherever I end up, I have a lot to offer, it’s just a matter of finding that place.  I have so much energy and passion, which I put into my last job, and which I will exude wherever I end up next.

I’m not too proud to ask for help, so if anyone has any leads on jobs that might be a good fit for me, please send them my way.

In the end, this blog is called Getting Closer to Myself.  That’s what I’ve been trying to do from the start, is figure myself out, and helping improve the world along the way.