Hope Will Swing Again

Our country was founded by jackass white men who raped women, owned slaves, and killed people to get what they wanted.  They didn’t listen to the British, they didn’t listen to the Indigenous people, they just came and conquered.  We see them as heroes because history is written by the victors, but more and more we are starting to embrace that they were ASSHOLES.

And yet (very small yet) they created documents that allowed for interpretation that have been pushed and changed and rewritten to be more inclusive and less racist/sexist/xenophobic.  Our country is still founded upon the beliefs of these often awful straight white males, but we have found ways to take it back.  We being the people who aren’t those who are privileged.  We being the people who aren’t rich, don’t have penises, and don’t conform to outdated standards.

This country operates as a pendulum.  The farther it swings one way, the harder it’ll swing the other.  Trump is a response to the first black president.  Kavanaugh is a response to Obama appointing two women to the Supreme Court, one of which as the first Justice of hispanic descent.  

So as much as this period in our country absolutely makes me disheartened, angry, and ashamed, I know that the pendulum will swing back.  We will have our time, and we will make it right.  And we will fight when the rebuttal happens again.  But we can’t let them win.  We will die, and we must do all that we can to make this country, this society, more decent than the one we were born into.  It was founded by hypocrites, but adopted by those who see more justice than they ever did.  And our goal should be to fight so hard for equality and others’ rights, that one day we are viewed as those who were outdated and blind.

It’ll be okay.  I am ashamed, but the pendulum will swing back.  And we will be ready.

It Has Been A Year

     A year ago was the day Spencer and I started our voyage across the country!

I'm still so grateful that my wonderful friend came to see me off, and imortalized that moment with a photo of me with my hopes and dreams stuffed into a very heavy backpack, and picnic basket with Spencer inside.

          It's always sort of jarring to be able to look back at who you used to be. I've lost half of the items in this photo, but also gained a lot of perspective.  This has been a tough year.  To be completely honest (as I have always been on this blog) one of the hardest things was coping with regret.  Wondering how much happier I could’ve been if I hadn’t moved.

          The hospital was when my perspective really changed.  Starting then, I’ve lost an average of one person a week.  Best friends, the closest I have to family, who knew how much I loved and valued them, and with this year’s challenges knew how much I needed them, deciding they could no longer do it.  And I don’t blame them.  My life is tough; some days I feel like I’d opt out if I could.

And in these hard thoughts, I’ve considered, what if I hadn’t gotten sick?  Or if I hadn’t moved? Would I still have those people in my life?  Are the people that I have left only still here because they weren’t in the same city to be challenged as my friends here were?  Am I doomed never to have people consistently in my life?  How much of this could’ve been avoided if I had stayed in Philadelphia?

          But you know what?  When I went back to Philly I found those same friends and some new ones happily waiting to hug me after almost a year apart.  I used to think no one would be in my life for longer than a year, and my friends vanquished that fear.

          And just like I’ve lost half of what was in that photo a year ago; I’ve gained a lot too.  A year ago I thought dreams were more important than reality.  Now I’ll never gamble my current happiness for something that I hope is better.  A year ago I thought I had to be in LA to do TV-Film; now I know that art is who I am.  No matter where I am I will be creating.  And after a year of mostly trying to survive, I know that I’d rather go where survival is easier and to the friends who won’t let me feel lonely.  A year ago I thought that love could conquer all.  Now I know it’s a little baby that you have to nourish and care for and protect.  A year ago I left a city thinking that life outside college would always be that great; now I know it was that city that made life so magical.  A year ago I left behind friends that I knew I would miss; now I know that they are my family.  A year ago I was lost and now know where home is.  

          So I can’t regret this year.  It’s helped me learn to really invest in that and those that I love; and that being where you are happy is more important that going to where you think you “should be.”  As far as health goes?  This year was rough; and now I know that no matter how invincible I think I am, that hospitals are always a possibility.  So I want to spend investing in what makes me happy and what will help me pull through when things get rough.

Now that it’s been a year, I’m ready for the next adventure. 

How Hope Wins: Life is Like Hopscotch

So unsurprisingly, these last few days I’ve been thinking a lot about the importance of hope.

It’s interesting, hope works a lot like my pain management does.  To explain, I’ll clarify a little about my meds: Right now I’m on a narcotic that I can take every 4 hours.  One way to do this, would be to wait until I am in pain, and then to take the pill.  But then so much of the drug is then committed towards getting me out of the bad pain and back towards neutral…..this is sounding unnecessarily complex.

Hmm…Pretend it’s hopscotch.  Where I’m trying to hop towards being pain-free, and I have the pain monster behind me.  So the drug can help me move 4 hops forward, but the pain has already made me move backwards three.  So when I take the medicine, I really am only moving forward one square towards being pain-free!  Thus, the other way to try to manage pain is to take the medicine every 4 hours, not waiting for the pain to join the hopscotch game.  That way I can move forward 4 hops every time I take it, and be closer to feeling better.

(Now, this is a hopscotch game to play with doctors, of course, because narcotics are a little more complex and potentially addictive than childhood games, but as long as that is known, the metaphor holds.)  (….we can pretend it’s a game of hopscotch over a lava pit and my doctors are my hopping-coaches.)

So.  I have realized that hope works like this too.  It’s a hopscotch game headed towards happiness, with the dark feelings behind me.  If I try to think of something positive, I will move forward three squares towards happiness.  But if I wait for the sadness to take over and pull me back 6 hops….then I’m barely moving forward.  I’m still hopping three steps towards happiness, but I’ve been pulled so far back that it may not even feel like progress.

Thus I have learned that happiness is something that must be managed like pain: with a daily effort towards moving forward; otherwise it’ll feel like the darkness has taken over in my game of hopscotch.  And it’s important to feel like I’m always moving forward; that I have that control over my own happiness.

In my last post, circumstances had allowed the sadness to pull me so far back that I felt like I was losing my hopscotch game towards happiness.  Generally, I would hide in moments like this, not publish them….but I am committed towards the honesty of where I am in my healing process.  So I wrote about it.

But.  Just because I was losing the game then, doesn’t mean I’m not doing everything I can now to hop towards happiness.

It’s just going to take a little more daily effort, I think…..which to me sounds like a lovely project.   And I have a few ideas a-brewin’ :)

In the meantime…why is all of this relevant?  I have another nerve block scheduled for today.

This is the treatment that was the *first thing* to help me in months, which then failed after three days.  So as you can imagine, it was a ton of excited hops forward, only to be pulled even farther back by the fear that the pain monster is always going to win.

And yet I am nevertheless trying again today.  It’s a gamble and I’m wagering my physical and emotional states….but again, I need to feel like I am in control over my own hope and happiness.

So even if the treatment fails again, three days of relief where I feel released from the clutches of pain and disease…..perhaps this is such a victory that the elation of it can bring me residual hope, even when the treatment begins to fade.

Because even though I’ve spoken of two hopscotch games, the physical one of hopping from pain towards healing, and the emotional one of moving from sadness to happiness…they’re really both the same game, with  the bad behind me and the good in front of me.

And I’m still learning all the rules…..but I am thinking that I can choose the number of hops I take.  I think I can limit how far back pain pulls me, and I think I can allow my own victories to boost me even further forward.

So in addition to the nerve block, today I’m also trying a bad-block.  And I need hope to win.

This is my new goal.

Wish me luck today ;)

(above are four moments where hope won during hopscotch.  The first time I got to wear my clothes after 10 days in hospital gowns; a puppy that decided she loves me; a security guard that made me feel confident in a wheelchair; and a sparkly reminder that everything is going to be great.)

Health & Emotions: "I hope that by expressing myself, I can connect to those that understand the unusual"

Hey loves.

I wish I had better news for my update to you, but I’m still struggling with everything.  

Health-wise, my diet was changed last week back to solid foods, but the pain I get when eating is the same as it was before all of my hospitalizations.  My doctors are confused and I am, too.  I should be better by now.

 And it’s hard, my friends, to get out of bed each morning and take my meds when I feel like nothing is really helping.  I still do it because I am an intelligent individual and know how important it is, but emotionally it gets harder each day.  Plus I still need to find a place to live in the next fifteen days and I don’t know how I’m going to balance all of this when I have to go back to work. 

This is all just a lot for just me.

To help keep my spirits up, I’ve been trying to do social things every few days.  I went to a party, for instance, to see some of the people that I miss and had welcomed into my world a few months ago.  It was fun and full of some incredible friends, but it was also really hard.  I didn’t feel strong enough to stand for a lot of the party, and I was in pain while trying to enjoy myself and seem “normal.”  Also not everyone there knew how hard things have been, which is fine and totally their choice, but made it a bit challenging.  

For example, someone told me that I look skinny and meant it as a compliment…..but I’m skinny because I’ve been in too much pain to eat and so I’ve been malnourished for the last month and a half.  It has not been “good” weight that I’ve lost; I’ve felt what it is to stave and to feel my body deteriorate….so all of that adds a different connotation to “skinny” than what is normal and expected.  And the sweet person simply meant to compliment me.  So I thanked her with a genuine smile, but it reminded me of how different this experience has been from what people are used to.  

Reintegrating into the “normal” world is going to continue to be hard, I think.  

But writing about it helps, and I am definitely not the first person to feel this way.  So I hope that by expressing myself, I can connect to those that understand the unusual, and at the very least, it will allow us to feel together in this and not alone.

And I’ve definitely felt that connection throughout this experience.  Sharing my story has been powerful beyond what I had imagined.  I’ve been floored me how empathetic people are, and willing to reach out.  And I’ve discovered this power of human connection in all scales of sharing my story.  

From the GoFundMe campaign, where I finally asked for help and in return have been able actually take care of myself without having to stress; to even something as simple posting a picture yesterday of a syringe.  See, yesterday I began a medicine that requires injecting myself every two weeks and so I posted a picture of the syringe (which I hope will eventually not scare me and make me cry).  And I had about four people all reach out with their empathy and tips for their own experiences with syringes.  People really are amazing.  Here is this scary new thing, and I immediately had a support team willing to be there for me.

So although I don’t have huge news on health progress, and yes, it still is a battle each day, I definitely feel like I have troops beside me in this.  Not everyone needs to read these words, nor do they have to even care about what my life has been like these last two months (or 23 years)…..but it’s those that do care, that are reading and reaching, who choose to be my support, that allow me to get out of bed each day and continue to fight this battle.

So to those of you that are my troops: I can’t adequately express how important you are.  

You are my courage, my wisdom, and the voice telling me I will survive this battle.  And for that, and everything, I can’t thank you enough.

I am healing :)

Hello my sweets.

So I’ll update you a bit on my healing.  I feel confident enough to say the word “healing” this time, too.  When they discharged me from my first hospital trip, it felt like all they did was give me a handful of narcotics and wish me luck through the Thanksgiving holiday.  Fast-forward a few days into that week, and with every bite of food, I was curled up in a ball of pain, sweating and shaking and making sounds like a animal trapped in a cage.  Later into on that week, it digressed further, towards me feeling like that constantly, not just with bites of food.  So that was not “healing.”  Thus me heading back to the hospital and staying for another ten days.

But, here we are this time, five days past my second discharge, and I have yet to decline into that pained state.  I am on new medications for my Crohn’s and for my fibromyalgia, the latter of which some doctors attributed to my extreme pain.  So that’s better.  There are more answers.

I did, however, come home to an eviction, though.  Which is just “wonderful.”   I live in a building without the proper housing permits, so without lots of monies for lawyers, it’s not worth fighting the landlord that simply decided she wants the room back, despite my lease.  She also evicted me while knowing I was in the hospital.  It’s strange to see people that had been kind, show their true colors.  Like a wolf turning from a pup into a snarling beast.  It is horrible to know people like that.

So I need to get out of here…. plus losing the feeling of control over my space has been triggering both my PTSD and my fibromyalgia, so it will be healthier for me to move….now it’s just finding where…and how…when I can’t even get up a flight of stairs without help.

Basically there is a LOT on my plate; but I am getting better.  And I can only take things one day at a time.  And the other morning, when I woke up into the sunshine of a new day, and put on a cozy shirt and I looked at myself in the mirror, I saw no IVs, and had fewer bruises; there were no hospital sounds or doctors in sight.  It was just me.  Healthy and smiling.

And my friends, I saw myself as the person I want to be; who I want to grow into.  So as scary as all of this is, I saw a glimpse of the future; and this whole transition is guiding me towards exactly the person I want to become.  And that to me sounds like healing :)

Renewed Hope in Humanity