“The most common way people give up their power is by thinking that they don’t have any”

- Alice Walker

My symptoms started developing a few weeks ago, after a pretty miserable duel with strep throat.  The strep throat clears up, I jump back into the pool after a 4-day hiatus, and–unsurprisingly–I’m struggling to find my stroke and put some power into it.  But, this is normal.  If I get sick with a weakened immune system, I get exhuasted.  It really takes a toll on my body.  And, I’ve seen it before…but, I usually get past that.  So, here I am, really unable to get through practice and wondering why I can’t keep up and I have to almost pull an all-nighter for three 4-page papers due during my hell week of exams.  1) Not smart, 2) didn’t help my cause.  Well, I had to do it for my class.  Whatever.  Then, the super cool, newly-21-year-old over here (yeah I’m talking about the girl in the mirror) decides that she’d exercise her ability to be 21 and goes out to celebrate the end of classes, since my school suddenly has a random week-long fall break.  Since when did I get so smart?  I don’t know.  That didn’t help either.  To make things even better, of course we have double sessions during this random week-long fall break, and my body is REALLY loving me at this point.  But, it doesn’t feel I’m even that tired…I just can’t pull myself through the water.

And, then we have two meets–back-to-back on Friday/Saturday.  And there’s something wrong.  I can’t get through a 50 freestyle.  Two laps.  I’m exhausted.  My body won’t do what I’m willing it to do (okay, maybe I shouldn’t have said “will” — abandon the implications/questions about free will for right now, please).  It won’t move faster, it won’t pull harder.  And, I struggle.  I say it right away: there’s something wrong.  This isn’t me.  I’m working my butt off.  I think that the Myasthenia is sauntering back.  My parents aren’t so sure, or at least they want me to not worry about it now because it hasn’t reared it’s ugly head.  And I don’t want to worry about it, to be honest.  I can deal with being horrible at swimming; I just have to keep pushing myself.  Okay, fine.

But then, on Monday, things start taking a turn for the worse again.  This time, it’s not just my limbs.  It’s my eyelids.  The left eye starts drooping.  There’s peripheral double vision (but nothing bad, I mean I still see singularly.. I think my brain’s getting really good at adapting to these issues).  And then the ptosis (drooping) starts progressing.  And I can barely keep my eyes open at times.  Really?  Ugh.  Come ON.

So, it all gets worse.  General muscle fatigue, drooping, double vision (kind of).  I get tired standing up, walking around campus, swimming, keeping my attention in class.  No big deal.  I have a neuro appointment tomorrow, so we’ll figure out what’s gonna go on.

But, in the midst of all of this, my biggest struggle isn’t dealing with what’s to come.  I’ll deal with it as it comes.  It’s not that I get embarrassed of my drooping eyes, because I do.  But, I’m covering it all up with my glasses and hats.  That’s fine.  It’s that, in all of this, all I want is to be able to be competitive again.  I’m not even just talking about being on the swim team at school.  It’s the I have SO much drive and SO much competition within me that I can never unleash because my body just won’t allow for it.  I’m looking back at the day where I could race the person next to me.  The day where I could sprint until my arms and legs would fall off and see a best time.  I miss the day where I could get better.  Where I could work towards something.

Welcome back, Myasthenia.  Sure, you can come in.  Don’t worry, I wasn’t even gonna ask you to take off your shoes anyway.  Please, feel free to help yourself to anything I have.  What’s mine is yours.

This trip has quite literally been in the making for two years.  I was supposed to go last summer, but political turmoil caused me to cancel the trip.  This time around, well, I’ll be there.  I’m going down with a group of people from school and we’re setting up a medical clinic, just for a week.  We’ll be in the more impoverished, rural areas helping out in the ways that we can.  We can’t do much to heal these people, but we can be there for them and show them that people care.  That’s the most important of it all anyways.

The weeks leading up to this point have been quite chaotic emotionally.  I keep going through identity crisises.  Doubting what I firmly know and believe.  Feeling alone.  It’s all funny, because I like being alone sometimes.  I lke being by myself and away from everything.  Away from the chaos.  I like the silence and I like the stillness.  The break from the noise is the most amazing release.  In all of this, I realized that everything that all of this “stuff” that I firmly believe in…all of the “stuff” about myself and being happy and comfortable with who I am…is all delicate.  It’s easy to lose track of of it all and it’s certainly easy to let it slip through your hands.  But, I kind of like how it’s a dynamic process.  There’s never such thing as static when it comes to understanding yourself.

I will say that, lately, I have been overcome by an urge, a desire, to do more.  To give everything that I can give.  To find a way to make a difference.  I want to do something big…something that positively impacts others in a personal way.  I just want to help others.  I don’t know quite how, but it’ll be big.  Hell, it’ll be huge.  Just watch me.

Also.  I’m starting to go through another round of “career crisis.”  I’m going to be a senior in college and I have no flipping idea what I want to do with my life.  Medicine.  I do know that I want a life in medicine.  But, I don’t know anything more than that.  On days that I feel studious and investigative, I want to be a doctor.  On days that I feel compassionate and loving, I want to be a nurse.  I would say that I could get the best of both worlds, but I want completely different things out of both options.  I honestly must not know enough about either profession because I get such a “black or white” vibe from this type of decision.  I mean, they are two completely different paths…but they do have bits of what I want in them.

I’m afraid that I don’t make sense because it’s midnight and I’m tired (though, I can’t sleep right now).  I’ve done some research in the decision-making involved in choosing MD or RN.  From what I found–which, may I add is not much and not representative–a lot of RN’s didn’t want to become MD’s because it is too much money, too much energy, etc.  And, a lot of MD’s became such because they like the autonomy.  Well, great.  I don’t care about either of those (right now).  Right now, in this moment, I want to be challenged.  I want to show that I care.  I want to listen.  I want to give.  Super.  You can do all of that with both careers.

I used to not want to go to med school because I want a family and because I want to be able to be there for my family.  I want to be able to raise my family.  Then, I thought that was stupid because I don’t know when I am going to have a family (let’s be real–I’ve never even had a serious boyfriend before), so why should I let go of something that I really want to do (ie, be a doctor).  I shouldn’t.  But, the question is: do I want to be a doctor and everything that comes with it?  I realized that the best way for me to give back to MGH was the continue it’s legacy.  Kind of like pay-it-forward.  But, IN WHAT WAY?  Why can’t I just have an answer?  Becoming a nurse is in no way “settling,” so I can’t look at it in that way.  It really just comes down to one question.

What do I want from my career?

It’s kind of amazing how you can learn so many life lessons in yoga.  I’ve been doing a lot of yoga lately…a real lot of yoga.  Bikram yoga.  105 degrees.  It makes you sweat like you’ve never sweat before, and that’s one of the things that I love about that.  It’s working and pushing my body in a way that I am not used to.  It breaks up routine.  It’s exciting and fresh.

And, what’s so wonderful is that is has so many life lessons embedded into it.  My favorite is letting go of the past.  The moment that you just had is gone.  Learn to let go and focus on what’s now.  You’re in the now.  How will you make the most of it?

I love it with philosophy collides with different areas of my life.

1. There is an inherent good in everyone.
2. Love keeps you going from moment to moment.
3. Genuine happiness does exist.
4. You only know how you feel.

Now, I want to add a fifth absolute:

5. Everyone is worth it and everyone deserves the absolute best.

Yeah.  I believe that.  Because I know that I’m worth it.  And, if I’m worth it, then I can honestly say that everyone else is.  I’m no saint.  There are plenty of people out there who are better than me.  And, who am I to say that my faults are any less bad any anyone else’s?

But, that’s the thing.  I’m still worth it.  I know that I am.  And, if someone else doesn’t realize it then it’s their loss.  That’s hard to grapple with because sometimes you don’t want to lose their friendship.  You still want to care and you still want to wish them the best.  Well, there’s nothing stopping you from caring.  If anything, it should be more of a reason to care; to hope that the other person finds that same self-worth that you know you have.  Finding the ability to separate your own emotions and let them find their own way is the hard part.  That’s what takes strength.  It takes every fiber of your strength to separate yourself like that.  To let go without letting go.

Everyone else just needs to realize that same exact thing for themselves.  It’s the most amazing feeling when you do see just how you deserve the best.  It’s liberating.  Comforting.  Just ask someone who has realized it about themselves.

It’s so unbelievably amazing to watch other people realize that they’re worth it.  It’s one of the greatest feelings.

This song has been following me recently.  I’m not opposed, though.  Right now I’m muddling through how often “the risk” is worth “the fall.”  Just generally.  It’s definitely a common idea; to jump because there’s always so much to gain, even if you fall short.  That idea is everywhere.  And, I want to say that I agree.  Because it’s a more confident way to live.  The “no-regrets” mindset falls in this category as well.  But, I was wondering how the “play it safe” mentality overlaps with it all.  They’re completely opposite but, if we’re going to look at it as gambling, there are instances where staying safe is more beneficial than betting it all.  So, how do you find that balance and know when to raise the ante or when to fold?  I wish I played more poker.  Maybe I’d have a better understanding.

I did, however, develop a great starting point.  I am remembering that I am worth it.  It’s something that is easy to lose sight of.  I forget it a lot, actually.  But, right now, I feel it.  I know it.  And maybe it’s now time to figure out why I’m worth it.  Recognize the ways in which I’m different and special.  Take that little leap of faith that I was talking about earlier.  Relearn how to trust myself.  Or, maybe I just need to be reminded that I can trust myself.

Maybe you were all faster than me
We gave each other up so easily
These silly little wounds will never mend
I feel so far from where I’ve been
So I go…and I will not be back here again
I’m gone as the day is fading
In white houses

I lie, wrote my injuries all in the dust
In my heart it’s the five of us…in white houses.

But, one of the things that was brought up here was the next step.  Where do we go from here?  There are side effects to my medicine, as there are to all medicines.  Cancer, mainly.  And, since CellCept controls MG by suppressing the immune system, there’s also a bit of an issue when it comes to pregnancy.  I’m still not ready to become pregnant (hell, I haven’t even really dated anyone), but it needs to be considered.  I can’t get pregnant if I’m on CellCept.  Becoming pregnancy shocks your immune system as is: foreign DNA, bloodtype, etc. enters your body and you immune system wants to oust it.  If it weren’t for specialized cells that are activated upon pregnancy, this would happen (look at kangaroos- that’s why they have the pouch for the joeys).  So, these cells locally suppress your immune system and keep it from attacking your fetus.  Basically, I have to be off of CellCept in order to get pregnant.  Pregnancy could cause a Myasthenia crisis, meaning that my symptoms could flare up.  Badly.  Weak voluntary muscles mean double vision, droopy eyelids, facial paralysis, weakened limbs, difficulty swallowing, and difficulty breathing.  Now, I don’t think that it will ever get to the last two.  We can control the MG through plasmapheresis.  That’s worked before.  But, it’s still scary.

And the thing is, we don’t know what happens when I get weaned off of the CellCept.  Some people tolerate it just fine.  Others go into MG crisis.  There’s no telling what will happen.  And, I’m not sure if I’m ready to find out.  I don’t know when I’d be ready to find out.  I just have so many plans.  There are so many things that I can’t interrupt with a potential MG crisis.  So when do we test the waters?  I don’t know.  I’m afraid of doing that.  I’m afraid of putting my life on hold again.  Because starting back up now would be infinitely times harder than starting back up at the end of high school.  I don’t know what to do.

I did realize one thing yesterday.  You know my strong desire to give back to MassGeneral?  To give back to any hospital?  I never know how to thank everyone who has helped me enough.  All of these people have helped me in more ways than I know how to articulate.  There will never be enough that I can do to give back.  Ever.  But, recently, I’ve been grappling with my future more than ever.  Yes, I want to be a doctor.  No, I don’t want to be a doctor.  I want a family.  I want to give.  I want to help.  Where is the happy medium?  There isn’t one.  And, I’m having a hard time understanding that there isn’t one.  But yesterday, as I was leaving the hospital, I finally understood how to give back.  You see, every time that I go to the doctors, there is are residents and interns and other doctors and nurses who meet me.  Myasthenia is rare.  It’s a teaching hospital.  I get it.  I don’t mind.  In fact, I love meeting them.  They all show so much care and so much hope.  And, I want to thank them for this…all of the time.  I have so much gratitude for their kindness.  So, I realized that the only way that I can truly thank them is to continue their legacies.  To pay it forward.  To give back to other people who are in my position.  I need to become a doctor because it’s the only way that I can truly emulate what they do for me on a daily basis.