I have to believe

I’m scared to go home. I’m scared to go back to LA for the first time after everyone turned me away a year ago.  I just kept bouncing around from Mar Vista to Baldwin Hills (I think) to wherever the fuck Tomika and Lawrence live.  You don’t think I actually remember do you? I mean I was a train wreck.  Make that 10 trainwrecks.  I had just run away from/been thrown out by – either way it was a blessing – this dirtbag Lucky.  He hustled $1300 right out of the palm of my hand and he was ugly as sin.  Tattooed the fuck up with bad teeth.  Like worse than mine and I’m missing half my teeth and have to wear a prosthetic due to cancer.

When I was 21 I was misdiagnosed, I went to 3 different doctors – had 3 different biopsy results until the correct diagnosis was made. I spent 10 months in excruciating pain because some idiot misdiagnosed me with a benign tumor which is was not.  It was cancer.  It resulted in the tumor being removed without clear margins and the cancer spread.  I was originally told I had to lose my right eye.  My right maxilla, right cheekbone, right hard pallet, roof of your mouth, right sinus – gone.  All gone.  That the rest of my life is going to be dealing with a prosthetic so I can speak properly, titanium in my head and missing my right eye!  Fuck you.  “I’m not letting you take my eye.”  It wasn’t happening.

The problem was that the cancer spread up the rear wall of my sinus and up to the orbital floor. The eye socket had to go and the brain is on the back side of the sinus so I needed to move forward quickly with a treatment plan.  I told UCLA that I wanted to get a few more opinions.  I think my Dad or my aunt Pam, not sure which found City of Hope Medical Center in Duarte, CA.  They had a clinical trial going for osteosarcoma.  I entered I believe phase 3.  It was a 52 week trial and I was going to be inpatient whenever the chemo was being administered.

This was one of those dark times. Just as bad.  I needed my parents.  I needed their help and they turned me away.  Why wouldn’t they help pick me up when I needed it?  I wanted love and caring and emotion from my parents that’s real.  I would like to imagine that my daughter’s conversations about me go more like,  “She’s doing great grandpa.  She calls every day and is…..” what?  Better?  Better than what?  Homelessness?  What a disappointment I must be.  They probably go more like, “Well its fine grandpa she actually sees us regularly now…..”  No, I’m sure I’m so unimportant I don’t come up in the conversation.  My parents are “just checking in with the girls,” as my dad would say.  They don’t call me directly why would they ask my kid how I’m doing.

I thought they should have acknowledged some of the shit I went thru rather than just expect us to never talk about any of it. What if I needed to be able to talk about it to them?  No one ever asked me how I felt when they left to Paris when I started my clinical trial. I had stage 4 osteosarcoma and this was my last shot actually being alive.  I was just expected to be gracious about it and not be hurt and angry?

In their defense, they did cut their trip short. But starting that clinical trial was quite literally the scariest thing I have ever had to face and it was that moment that I actually needed them.  I would rather take back all the fancy birthdays and the monetary gifts.  Gift me that moment for all of those moments.  That’s what I want.  Because they weren’t there holding my hand when I faced death within months I’ll never believe, no matter what my parents say or do, that they actually give a shit about me.

I’m trying to believe in myself.  I’m trying to believe that I can do anything even if I don’t have my parents in my corner being my cheerleader.  I have to be my own cheerleader.  So, while I am scared to go home…I’m going to face them all with my head held high and be real no matter what.  Just being the best version of myself that I can.  Despite all my trials and tribulations, I believe that I am becoming a better person each day. There is always something to learn.  There is always someone to inspire.  Find strength in your rough times.  I may actually meet my goals by the end of August if I go home to LA and work.  So, I have to stop being scared and just get that money and keep pushing towards my goals.  I have to believe in myself.



What is perfection?

What is perfection?  Why do we strive to look like these models that we see all over social media?  I know I’m guilty of obsessing about my appearance.  Today I will be having eye surgery again.  This is the first time I am using an ocular-plastic surgeon.  All my previous eye/facial reconstructive surgeries were performed at City of Hope Medical center.  I have had 7 surgeries to date now.  You should have seen me right after the tumor was removed.  We’re talking hunchback of Notre Dame.  I lost half my face to cancer.  I have no right maxilla (cheekbone), no right sinus, no right hard pallet (roof of your mouth), no teeth on the upper right section of my mouth.  I have a maxilliofacial prosthetic that fits in and seals the roof of my mouth so I can speak properly.  Without it I can’t talk.  So you can imagine how traumatized I was at 21 to lose half of my face.  My self-esteem was already low.   According to the handout last week in our group therapy “Experiences during our early childhood play a particularly large role in shaping our basic self-esteem.”  My mother had me at 16 and I’m sure did the best she could for a child raising a child.  Last week, I had to take this self-esteem quiz in the packet that only made me feel even crappier about myself.  I apparently need to work on improving my self-esteem.  Well, no shit Sherlock.  I didn’t need a quiz to remind me of that. My sexual exploits and constant obsessing about my right eye were enough…

Our therapist also handed out a  reading from a book with a proverb for each day.  This one was dated May 12.  The last paragraph really spoke to me.

“By all means, take whatever action you can against a troubling flaw.  Many have lifted a sagging self-esteem by getting their bodies in shape or getting counseling to tame a negative emotional impulse.  But it is always a mistake to hinge our self-esteem on the few clumsy brushstrokes of an otherwise lovely portrait.”

I love the last sentence the most.  What is perfection?  Will we ever be thin enough? Will we ever  be tall enough? Have the perfect eyebrows?  The perfect lips?  What is perfection to you?  This brings me back to the surgery.  Today an eye surgeon will implant something to lift my lower lid on my right eye.  It droops slightly.  This imperfection is something I have lived with for 16 years.  Of course, I had many surgeries in hopes of making myself symmetrical again.  I have been dealing with my insurance company for the last 2 years to get an ocular plastic surgeon in my network.  I’ve obsessed and obsessed letting this one flaw contribute to my already low self-esteem.  Now, on the morning of the surgery, I’m excited but I am also not the same person I was just 2 months ago.   I must remind myself that I am a whole person as that reading stated.  We are more than just the sum of our parts.  What is perfection?  Whatever you deem it to be.  It does not have to be what society and social media tell us it is.  Don’t hinge your self-esteem on a few clumsy brushstrokes in an otherwise lovely portrait.