One Good Thing About Music

In the words of Bob Marley, one good thing about music, when it hits you, you feel no pain. That is one good thing- but music is everything. In fact, when people say, I’m not a music person, I don’t exactly understand the kind of person they are at all.

Have you no soul?!

Do you ever wake up on the wrong side of the bed, get into your car to drive to work, and playing on the radio is your jam? Your day just got instantaneously better. That’s the power of music. In that way, music for me is transformative.

Music is the nostalgia of your first love- it’s your first song, or the song that was playing gently in the background as you were breaking up in the car parked outside of your childhood home. Music is a holder of memories and it can be the source of both happiness and in some cases, moments we wish to forget.

When I was diagnosed with lupus I drowned myself in music. At that time I had just discovered Modest Mouse and I could listen to their CD, Good News for People who Love Bad News, on repeat. I was a wallowing teenager who wanted to be swallowed by the unidentifiable sounds and instruments of a band that told me we’ll all float on, alright when I needed to hear it the most.

When I’m feeling as though, today, I just can’t _______, I give myself a simple reminder…

One good song will give you one good cry. Three good songs may even make you forget, even if temporary. 

 

Maybe you need to cleanse your mind so you listen to Jack Johnson.
You want to go harder? Red Hot Chili Peppers.
Empowered? Beyonce.
Feel good and fun? Matt & Kim.

Music is limitless. At times, it has consumed my whole being, and I swear can feel the sensation reverberating off of my bones and become absorbed into my soul. I believe that’s what Bob Marley meant when he said that it hits you. While the pain doesn’t dissipate, it quiets.

Wear Your Sunblock

From the time I was little I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right.

I’ll take you back to 2002 when I was fifteen and it became imperative that I get “in shape.” Maybe it was peer pressure, boys, or the developing girls, but all I know is I wanted to be able to look good and not breath heavily while walking up a flight of stairs.

I had just bought some new sneakers, this is step 1 for starting a new workout regimen because this is the magic that creates motivation. I put those pups on and got my butt in gear. Now- I will be honest. I definitely ran under 1 mile. I attributed this to the lack of sidewalks and the rolling hills of upstate New York. Hey, it was day 1, day 2 would bring better results. Right? Wrong.

The following morning I woke up in agony. My legs ached, my arms ached, my face ached. I just assumed, man… I am really out of shape. Fortunately, my mother is a nagger, and I mean that with love. She was my biggest advocate and for that I am so lucky because I know not all people have their own nagger. You need someone to look you in the face and say, no, something isn’t right here. And for that, thank you, thank you, thanks to my mother who dragged me to every single doctors appointment.

The road to a diagnosis was not a quick one, but in the scheme of lupus it was- I was diagnosed within 1 year. Within that year came multiple doctors and multiple diagnoses (none of which do I actually have). First I “had” a thyroid condition, then I “had” rheumatoid arthritis, eventually I would be told it was lupus. In order to be diagnosed with lupus you need to fit into a certain checklist because there is not a single distinguishing feature of lupus. The indecisiveness of the diagnosis is probably what makes me a complete idiot with this disease sometimes. I will be truthful with you now and say, I have not always been the best lupus patient. I have forgotten to take my medicine, I have lowered how many pills I take because I don’t think I need them, I have skipped eye exams that I have to go to because the medicine I take has side effects that can damage my vision permanently.

Why do I do these moronic things you ask? I don’t entirely know. I often imagined that it is some big mistake and that I don’t have lupus. Well the truth is, I have lupus. I’m beginning to embrace that I do. And I can still live.

I created this blog for a few reasons. One reason is because of the confusion and fear that I faced when going through the initial years of this disease. I felt abnormal, angry, upset, different, I asked “why me” like I was the only person in the whole world with any problems. This was in a pre-facebook pre-blog crazy world, and I felt alone. I am finding my way through this disease each day. Thirteen years later and the emotions continue to change.

Every time I see my rheumatologist I have a slew of questions ranging from how much should I be working out? to why isn’t lupus on the list of approved disease for medicinal marijuana in New York? Maybe he was exhausted by me, but he looked at me and said, “Listen, you can do anything. live your life. And wear sunblock. seriously, go put on your sunblock.”

Nose Rings and Jelly Beans

 

When I was 21 I got my nose pierced and I kept it in for three whole months. Concerned that if I kept my nose pierced on an upcoming interview I wouldn’t get the gig, I took it out. The piercing closed up immediately, the interviewer had her nose pierced. I didn’t get the job. Is there a moral to the story?

All of my life I wanted to take risks, but I was too afraid that if I traveled throughout Europe for a year, I could lose it all.  If I was a little too loud or a little too crazy people wouldn’t take me seriously. I didn’t want to care, but I was internally bound to this script that I had planned out. But life doesn’t work in a predestined screenplay where a funny and charismatic J. Law acts out your every move. I know: Whyyyy notttt?

In my early twenties I began to feel like I was bursting at the seams and that my sense of purpose was skewed because I could no longer identify what truly made me happy. Is happiness being content? Is it making money? Achieving your dream job? Having a loving significant other, but you are unable to make time for them? I rationalized that if I put the time in now, it would pay off later. This was true, I was beginning to get everything I wanted because of my dedication, but the responsibilities began to grow, continued to grow, and the truth is, responsibilities will never stop growing.

After a bad flare in 2013 I felt an insatiable need to appreciate the life I had been taking advantage of. Ultimately, what does this all mean? If there is nothing to look forward to when it is all over, can I say I am satisfied with what I have done with the time I have been given? Disease makes you reflective. Flares make you exceptionally reflective.

I recently became inspired by a movie Seeking a Friend for the End of the World. This movie did not get the best reviews, but I enjoyed it because it made me question my life. If we had two weeks to live, everything was about to end, would I feel fulfilled? How would I spend my time? Did I accomplish all I wanted to do? Am I happy? Isn’t this life we live in such an unbelievable journey? And what if the time we have can be conceptualized by jellybeans?! (see me: click)

Recently I got my nose pierced. At 29. And then put a hoop through it. A real “F you” to the man- whoever the man is. My mom tilted her head the way a dog attempting to process a conversation might do.

Oh, honey, what did you do to your face?